My Failed ADR Experiment

"Year" Update

2010-03-16T13:24:00.002-04:00

I went to see Dr. McAfee in Baltimore this past Thursday for my one year follow-up. It was actually a 15 month follow-up, but that was because he was traveling the world and I was dealing with a tough work schedule.

The visit was quick, but I walked out with x-rays and my records in hand. The L5/S1 area fused perfectly, no worries there. He feels that my recent pain is probably due to a partially bulging disc at L4/L5. I was thinking the same thing; yes, I'm a pro at diagnosing myself and I know what a bulging disc feels like. This one is out towards the right as I'm having pain in my right leg only, so at least I have that going for me. No surgery needed at this time. A cortisone injection and physical therapy was recommended. I plan on doing the first one and acupuncture; I'm skipping the PT as I've never had luck with it in the past and always end up worse off.

The other positive thing was that I got his blessing on something I've been holding off discussing over the last couple of weeks. In early February I posted a letter that I wrote to Rush University regarding the metal reaction testing they had developed. Well, to my complete surprise, late on a Friday night I received a response from the head physician who has written a lot of articles on the topic of metal/implant reactions. It was so kind that it completely made my year. He gave me his Facebook group page they had just started and asked if they could use part of my letter as a testimonial for their web site. The big news - he requested my permission to use my story as a case study, since it is the first known example of an artificial disc causing an autoimmune reaction. In the past the other case studies have been on hip & knee implants, but not spine implants. After talking with Dr. McAfee and getting his blessing (I wasn't about to tick off the person who helped save my life), I agreed to the case study.

Contrary to what some may think, I doubt this is going to put me on a course to fame. I will be nothing more than a "Jane Doe" or "Patient #1", I'm sure. But this is a very important case study that will likely be highlighted to spine surgeons all over the world. And you know what, that makes me happier than I could ever describe. Even Dr. McAfee, the person who knew it made sense to remove the disc, doesn't understand the difference between someone not being able to wear jewelry and the reaction a body can have to an implant. This is so important, especially in a world where people are getting older and more implants are being created every day to treat the ailments of the baby boomers & beyond. Studies are showing that you can be just like me and have no allergies to metals on the outside of your body, but then you add an implant and your chances of having a metal reaction DOUBLE. Because most physicians have no clue about this cause/effect relationship, people are being misdiagnosed with things like fibromyalgia. I know of two people out there who were in that position and finally got the metal testing & it came back positive. But because they are not in the U.S. (one is in Canada & the other in Europe), they can't have the disc removed because their government paid health care won't cover it. It's expensive, not to mention a life threatening surgery that very few people could/should do. I read of stories of others with the artificial disc suffering with similar ailments, and this is not a trend that is going to stop any time soon. So to me, getting a case study out there from a reputable physician who is known world-wide for his research on the topic can only be a good thing.

So that is what is going on with me. 15 months later I'm still dealing with pain issues, but it could still be so much worse. I don't think this will be my last post, but the posts will continue to be sporadic just as they have been. I'll post updates on how the injection/acupuncture works out, and hopefully my final entry will be a copy of the case study along with a picture of a happy, healthy, 80% pain-free me.

Quick Update

2010-02-15T11:07:00.002-05:00

I went to the primary care office on Friday where I was given some prescriptions to help with pain & sleep. Nothing big or serious, but just something to help take inflammation down and to also help take the sharpness of the pain and make it less horrible when I'm trying to sleep. So far I actually had a good night's sleep on Friday & Sunday night, but Saturday was up most of the night again.

My doctor has no clue what is causing this recent flair-up, but since I only have to wait a month before I'm back in Baltimore she just did what she could to get me though until then. She tried to give me nerve medication and anti-depressants for pain/sleep, but as always I refused. If it ever gets to that point I think I'd rather throw myself in front of a bus. (For those who don't know this, I actually use the "In case I get hit by a bus..." saying, so I do mean this as a joke!)

I wish I could say I feel better today but I don't. All I can do is get through each day, do as much as I can, make sure I rest as much as I can and before I know it I'm sure my Baltimore visit will be here.

What is this?

2010-02-08T07:07:00.002-05:00

I've been in denial for a few weeks, but the lower back pain is back. Severe, sharp back pain that is also causing me severe, sharp pain in the sciatica nerve in my right leg. It's now to the point where it's a Monday morning and I'm home, because if I were to drag myself into work all I would be able to think about is how much pain I'm in, how terrified I am and how exhausted I am from hardly sleeping the last three nights.

I don't know what is going on, and it will likely be several weeks before I do. I'm deeply concerned and caught off guard by the whole thing. I have an appointment with my Baltimore spine surgeon in March, so things will have to wait until then...unless I can't get things to calm down enough where I'm not suffering so much. Then I guess the game plan is to see if I can get an epidural injection, something I haven't had since 2007. It basically takes me out of commission a whole work day and has the potential to make me even worse, but I'm thinking that may be the only thing that can help short term.

I'm not sure what the next hours, days, weeks, etc. will bring, but at this point all I can do is pray that I'm not meant to go through another spine injury. What's meant to happen will happen, but this little setback has been pretty devastating to me physically and mentally. I've been hoping things would turn around but it's clear that's not going to happen so easily. I'll post updates here as I have them.

Letter to Rush University

2010-01-15T08:28:00.003-05:00

Rush University has an orthopedic group that has created metal reaction testing, which is slowly becoming more important as the number of orthpedic implants continue to grow each year. I had testing done back in August/September of 2008, and from what I've heard on some of the spine message boards they have not gotten much response back from doctors/patients after the results are given. So I decided to take the time to write the Director of the group, who was the one initially contacted about my situation and decided I would share.

Why am I doing this? Well, not so much for my friends and family, but more for anyone who is researching ADR's and comes across my site. A popular spine message board I use to frequent is really promoting the artificial disc - in fact, the head guy just put out a video about it showing several people making the decision to have the surgery, and then showing how great it was for them. This obviously goes against my own experience (and the experience of many others), and I feel there is a responsibility to show both sides. So in an effort to continue to log my story until I find a better way to share information, I decided to post the letter here.

January 15, 2010

My name is Carrie Fairfield, and in August 2008 I had blood work sent to your facility for metal reaction testing. I had received a Charite artificial disc at L5/S1 in May 2005, and though it had initially been successful I had been suffering for over three years with unexplained pain and blood abnormalities that had yet to be diagnosed. After consulting with my spine surgeon, Dr. Scot Miller at Crystal Clinic in Akron – who had contacted Dr. Paul McAfee with Towson Orthopaedic Associates in Towson, Maryland – the recommendation was to have blood testing performed through Rush University utilizing the techniques you had developed.

I cannot begin to describe the difficult journey I had been on for over three years by the time I had the blood testing completed. I had been to over 15 surgeons and physicians, none of whom could explain why I was dealing with spine, joint and all-over-body pain, in addition to a high anti-nuclear antibody count and a very low platelet count, none of which I had experienced prior to the artificial disc replacement.

I was 28 years old when I had the artificial disc replacement (ADR) performed, and with the exception of disc degeneration at L5/S1 I was in perfect health. Before I had the ADR I had asked my surgeon if a metal reaction was possible and was told no. I asked every doctor that I met for three years the same question, and it was always no. Yet from my own research and medical articles and studies I had come across, I strongly felt that it was a possibility. I just needed to find someone who could test me. In the meantime I suffered constantly from severe pain, which greatly limited my life. I continued to worsen year after year, and went from an active individual to someone who could barely make it through a work day, only to come home and regenerate so I could do it all over the next day. I saw my future and feared it wouldn’t be long before I had to quit my job and lose the last part of a “normal” life; I had already lost everything else.

When I received the results from your medical group, it showed a high reaction to nickel, a component used in the artificial disc. I was also slightly reactive to two other metals used in the disc. Given the results I was referred to Dr. McAfee, who removed the artificial disc and replaced it with a fusion in December 2008. Prior to that surgery, my platelet count was down to 16,000.

While the disc had been removed, due to the high risk of the surgery surgeons had put in an IVC filter, made of nickel, prior to the surgery. This was kept in until February 2009 before it was removed. My platelet count at the time of the procedure was 9,000.

In April 2009 I started feeling slightly improved in regards to the joint and all-over body pain. I had my platelet count tested, and it came back at 23,000. In July 2009 I had my count tested again, and for the first time since before the ADR it was at a normal level – 190,000. My local physician was shocked at the unexpected increase and had them rerun the test; the count came back at 191,000.

As of October 2009, after being nickel and metal free for eight months, my platelet count is 331,000. My ANA count is still high, but it seems to be a non-issue. While I am still experiencing pain in my joints, it is not severe as it was for the three years prior. The all-over body pain is gone. The overall pain levels are greatly reduced, and slowly I am getting my life back at the age of 33.

If I had not had your testing available to me, I don’t know where I would be right now. In my eyes, you saved my life. You gave me answers when no one else could, and those answers allowed surgeons to take action and remove the artificial disc, which I believe was the cause of my issues. Even physicians who were very skeptical of metal reactions have seen my progress and are now starting to admit that maybe there is something to it after all.

For over three years I was on a very solitary road as a patient. I cannot begin to thank you and your team for the service you are providing. In a time where implants are becoming more common, I believe that this is an area that must be explored more. Patients need to be educated on potential metal reactions; even though they might not be commonplace, I believe they do exist. So many physicians out there, including those at large organizations such as The Cleveland Clinic, have turned a blind eye to this information. This puts a burden on the patient to try to get information on this topic, and I will say from experience it is not easy or readily available.

I hope you do not mind, but I have shared my journey and information on the testing you provide on several spine message boards. I am already aware of several individuals who have opted for the testing before getting the ADR, and one who tested with high reactivity to almost every component in the disc. Again, I feel you are providing a very valuable service and I want people to be aware it exists so they can take advantage of it if they feel it makes sense for them.

It was on one of these boards where I learned that you had not been receiving much feedback as to what happened once the testing was completed & the results were given to the patient, which is why I’m writing today. Without your testing, I would have likely had a fusion with the artificial disc being left in. No surgeon I had seen recommended removing it; I hate to think of the condition I would be in today had I allowed that to take place. Your testing allowed me to finally get the treatment I desperately needed, and for that I sincerely thank you. If there is ever anything I can do for you or your organization, I would be happy to return the favor.

Sincerely,

Carrie L. Fairfield

December 28, 2009

2009-12-28T14:56:00.002-05:00

First, my one year follow-up appointment with my spine surgeon in Baltimore was moved to 2010, so no update there.

Today doesn't have much significance with my spine (and subsequent) issues, but two events did occur on this day. First, my Grandpa G. passed away four years ago today from leukemia. He was a pillar of strength and brought a great deal of joy into my life and countless others. I always felt like he had my back even though we were usually hundreds of miles apart. When he died I was experiencing initial symptoms of the disc failure and implant reaction, and since he told me several times he was worried about my back it really bothered me that he died before I had a resolution. If there is a heaven he is certainly in it, and I hope he can see the progress that has been made and that everything will be ok.

The other significance is that a year ago the husband & I were in a hotel room in a suburb of Baltimore. We had starting packing up and preparing for a trip home; the idea was that I would be cleared to travel and go back home the next day. That Sunday night Brad got a call about his mom, who had been admitted to the hospital. She was never able to return home, but did live until late March of this year. Given everything else Brad had on his shoulders this was a shock and a lot of weight to handle, but he did so with grace, composure and strength. I know it was unbelievably difficult for him to have his wife on the east coast unable to do much after a double-surgery while his mom was in an Iowa hospital. Timing was horrible, but you can do minimal to plan life events.

I was hoping to close out this blog in 2009, but will keep it open until the visit with the surgeon. I don't see day-to-day changes, but when I look at things month-to-month I notice little differences. We just finished eight days on a Midwest vacation in Springfield, Kansas City, Des Moines and Davenport, and to my amazement we did a lot of stuff with very little pain. The last couple of days my back started getting sore and I couldn't lug the luggage around like I did early on, but overall I was pleased with what I was able to accomplish. At times I get impatient and wonder why I'm not further along, but there is progress in the right direction and I'm grateful for that.

I hope everyone had a wonderful Christmas holiday and I wish you all a very happy and successful 2010.

11 Months, 2 Days Post-Op

2009-10-23T10:39:00.014-04:00

It's been awhile since I've posted an update, and since I know a few people still check back here I thought I would do so today. After I last posted I had my part-time team member out of the office unexpectedly for many weeks, plus with a business acquisition - my life has been work, work and more work.

I had an interesting email sent to me a few weeks ago. A girl about my age had read about what I had gone through with the implant reaction on one of the spine messages boards I frequent, and she was less than a month away from getting an artificial disc replacement. She took action, contacted the lab that did my blood work, and had the test done herself. Fourteen days later she received the results, and she - like me - had a very high reaction to nickel and a slight reaction to several other of the metals used in the artificial disc implant. Now opting for the fusion, she sent me an email thanking me for sharing my story and all of the contact information I had as it probably saved her a path similar to my own.

I'm not going to lie, as the last thing I wanted to do with my life was to be a guinea pig/test subject for others. However, I have always said that if something good could come from what I've been through then I could come to terms with it all and move forward. The email brought me a large sense of satisfaction knowing that a person was likely spared from the same path I was dragged down unwillingly. I'm able to now bring awareness to this issue so those who are contemplating the procedure can make as educated of a decision as possible given the complexity of this "simple" surgery.

So where do things stand with me? Well, my last platelet count a few weeks ago was 331,000, which is extremely healthy. My physician put it best when she said "Whatever auto-immune thing your body was going through appears to have resolved itself, or its in remission." Can you tell she is one of the skeptics when it comes to implant reactions? She is, but at least she still treats me like a person and is more open-minded than others I've come across. It's hard to believe that back in February my platelet count was 9,000. That is a huge jump, and the only difference is that now I am nickel-free. Physicians might doubt my pain levels, but blood work doesn't lie.

Pain-wise I'm definitely better off than I was a year ago, but I have a long ways to go. My body took a beating for over three years, I can't expect it to clear up overnight. At least now I'm starting to have 20-30 minute periods a few days a week where I feel close to perfect. No pain, nothing. It usually comes when I'm at work; I'd rather have it during my down time, but I won't complain! Tylenol arthritis has been a big friend of mine lately, as well as glucosamine even though it likes to shred my stomach. The big ingredient is shellfish, which I'm allergic to, but because I feel it helps with the joint pain I continue to take it.

I had been dealing with some unexplained foot pain for at least a year now, separate from what I dealt with before the surgery. I finally broke down and saw a podiatrist recently who confirmed that I have plantar fasciitis, which can often be caused by spine problems. I'm in a severe state, but it can luckily be treated with stretching - lots of stretching. It's something I'll likely deal with for the rest of my life, but already I'm noticing a difference by simply stretching several times throughout the day.

I go back to Baltimore for my one-year follow-up in December with my spine surgeon, so I'm hoping he's pleased with the results so far. It's hard to believe exactly one year ago tomorrow I was packing up and ready to head to Baltimore when I received the news from The Cleveland Clinic that my platelets were way too low (32,000) and they wouldn't approve me for surgery. It was one of the lowest days of my life, and the only time I've ever yelled at a doctor (though it was greatly deserved). What a difference a year makes.

Some days I feel like the progress isn't where I wanted it to be, but realistically I don't think I could be much better at this point. Day-to-day it's hard to see changes, but when I look at it month to month, or year to year, the changes become clearer. I am a long ways away from having the health I had prior to all of this mess back in May 2005, but I don't feel it's unobtainable. It will just take time.

With Thanksgiving coming up, it's a great time to reflect upon what you are thankful for. I am thankful for a husband who is my best friend and biggest supporter, and has helped me find strength even when I didn't think I had any left. I am thankful for parents who are always there for me, day or night. I am thankful for a brother who I know is always there, even when his schedule is ridiculous and we can rarely talk. I am thankful for my grandparents, aunts, uncles, and cousins who have provided a huge net of love and encouragement. I am thankful for the people I call my friends who provide me with an outlet to just be "normal", have fun, and enjoy life as much as possible. I definitely have a lot to be grateful for.

I'll try to post an update when I have my one-year follow-up. Depending on the outcome, I'm thinking I may close out this blog at the end of 2009 and go back to my regular one instead. I'd like 2010 to be a life that is not so impacted by "my failed ADR experiment." It feels like it's time to move on.

Almost 8 Months Post-Op

2009-08-10T14:25:00.004-04:00

Not much to write here. It's been a weird few months. I've fallen twice; yes, I'm a klutz. I had carpal tunnel surgery- right hand. Two days later a white van decided to merge into my lane with me being right next to them and I had to utilize my just-operated-on hand to quickly get onto the shoulder & steady myself from not going off the road entirely. That certainly hurt! Then last Thursday a cat ran right in front of me while going 30 mph, which caused muscle strains in my neck and mid-back. So, it's really hard for me to say how I'm feeling these days with all of the oddities occurring.

I'm not where I hoped I would be at eight months. Granted, it really is six months if you start counting from the time I had the IVC filter removed, which is when the last of the nickel was removed from my system. It's frustrating, complicated...I just try to do the best I can. Time will tell.

In the meantime I'm keeping busy with work. I also started a new little project that will be keeping me preoccupied for the next month or so - opposing the health care bill. I feel that changes to the health care system should be led by the medical community (and maybe some experienced patients like myself), not politicians. But that's just me. While I've avoided reading the talking points of the various parties, I instead read the bill and came to my own conclusion. Since I've spent 2/3 of my life dealing with the health system, you can imagine I have my own ideas. I'm not going to bore you with the details, but if you're interested in learning about what I'm doing let me know. I've basically started a petition, a new blog...I'm really trying to saturate the web as much as one person can while still holding down a 40+ hour/week job. It's taken a lot of work to get things organized, but it gives what I've been through some purpose. If I can do anything to help prevent someone else from going through what I've been through, then I will certainly feel like all of this was for a reason after all.

I hope everyone out there is happy, healthy, and doing well. I wish you all the best.

Finally - GREAT news!

2009-06-30T18:20:00.004-04:00

I had a platelet count today along with a bleeding time test in preparation for my carpal tunnel surgery on July 15. The bleeding test didn't go so well...16 minutes to stop after being given a small cut in my arm, when normally it should have been 10 minutes. I was worried, and awaiting a call from the hospital on my home answering machine telling me that my platelet count was too low, that I could die, not to do anything, go to an ER, etc.

So my dad works with the surgeon who is performing the surgery, and he was sent the platelet count and bleeding test results. My dad had told him about the bleeding test (because I asked him to), and he was concerned. However, my platelet count came back at 190,000. Not 19,000...which is my usual "range". 190,000. The surgeon thought they made a mistake and asked them to run it again, which they did, and that test came out at 194,000. Normal is 150,000...I AM NORMAL!!!

Because of the anti-inflammatory meds I'm taking for pain the surgeon concluded that was the reason for the poor results of the bleeding test. But given my platelets are normal, I'm set to go for surgery.

I haven't had much good news to share on this blog, so I had to share this. I have felt for some time that my symptoms are not what they were before the surgery. I have felt like I've been left with a lot of joint damage and suffering from pain as a result, especially in my hips, knees and ankles and feet. I was frustrated at my low platelet count, but the last one I had was in April about two months after they removed the last of the nickel from my system. It was around 20,000 then, I believe. Now it's been over four months since the nickel removal, and I have a normal count again. And I'm just shocked.

I wouldn't be surprised if I go in for another test at some point and it's low again, but for today I have a normal count. I haven't been above 150,000 since 2007 or possibly earlier than that. When I had my 2nd surgery in 2007 my platelets were at 110,000; a year later they were the same, but then took a nose-dive in the months following. Since November my highest count - without steroids or a transfusion - was 36,000. I've usually been lower than 20,000, and have been as low as 9,000. To go up 180,000 platelets in about four and a half months time is just awesome. I am so very, very happy right now.

It's a small victory today. I still hurt horribly, but I have platelets. At least for today, in my mind, I feel like what I had assumed for several years really was the truth - the metal allergy caused my downfall in health. I was brushed off, laughed at, ignored and made to feel like an idiot and a liar by doctors and nurses. But blood tests don't lie, and today is a victory for me, and one step towards proving that I was right. I hope there are more tests like this to follow. If this is the case, I think there are several people out there who have similar symptoms like me with no diagnosis; this could be their ticket to a normal life. But to prove the case you need test results to back it up, and now I have one in my favor.

6 Months, 7 Days

2009-06-22T12:17:00.004-04:00

Last week at my 6-month post surgery mark I spent it at the doctors office receiving treatment from a very uncomfortable and painful allergic reaction I had to an over-the-counter arthritis cream. I thought about posting, but was honestly too exhausted and miserable.

I tend to ramble, so my goal today is to keep this short. I'm in a lot of pain these days. Fell last Sunday at a Home Depot thanks to a pothole in the street that I completely did not notice (hence the cream I tried on my knees and ankles), which surprisingly didn't do much damage - thankfully. I'm having carpal tunnel surgery on my right hand on Wednesday, July 15. Will probably have the left one done a month or two after that, just depends on my work schedule. It is a very simple procedure compared to everything else I'm used to, so it's really nothing I'm worried about.

I'm compiling a list of diseases that people think I have and am slowly trying to rule them out one by one. I'm still in the mode where I just don't want to spend my time with doctors or tests. I'm trying to "move on" despite everything. I just keep working, keep trying to live as much of a "normal" life as possible, though I know it's far from normal. So I will slowly but surely make my way from doctor to doctor, and will let everyone know if something actually comes up. I'm not holding my breath.

My spine is doing great, though it appears every time we have a weather change it can get aggravated. Yesterday was a pretty bad pain day, and last night was horrible. Every night is bad, but when nothing you take helps, that's when it becomes horrible.

I knew going into the surgery it might not cure everything, and it obviously hasn't. I also knew that I had to move on no matter what the outcome, so that's what I'm doing. I hope people don't take it as giving up...I just need to stop delaying what I want to do in life, thinking that I'll do it "when I'm better." The bottom line is, there may not be a "when I'm better." So I'm slowly learning to live with what I have, and at the same time keeping my eyes and ears open for anything that may help improve my life. I don't wish to be this way, but will understand if it's meant to be this way. Not everything in our lives can be the way we want it. In the meantime you just have to live life with what God gives you and be grateful for it.

5-1/2 Months

2009-06-02T06:02:00.002-04:00

I decided to take a few weeks off from my health, hence the lack of posting. I sometimes get to a point where I just need a break from doctors visits, tests, etc., so I instead focus all of my energy on other things. That's not to say I haven't been feeling horrible, because I have; I just chose to try and ignore it and move on with my life.

During my break I spent most of it hard at work, but also managed a little fun time as well. I saw a few old co-workers/friends for a nice lunch. Brad and I went to Cincinnati (actually right spent most of it across the river in Kentucky) for a couple of days during the Memorial Day holiday, which was mentally and emotionally refreshing. It was nice to just hang out, not have a schedule and just take it easy for about 48 hours. We also spent about a half a day with an old friend of mine that I had not seen in a couple of years, and just had a wonderful, fun time.

Unfortunately I'm back to the pain levels I was at before the surgery with my legs, and where I was back in January with my arms and hands. The cortisone injections I had in both wrists back in February helped a lot, but I think with the driving to/from Baltimore and all of the time spent at work on the computer I'm now back to wearing splints 90% of my day. I'm also back to the severe nighttime pain; I've woken up three nights in a row with the horrible arm pain and have had to sleep in the recliner in order to keep the pain as minimal as possible. The leg pain is unexplainable. My joints are very swollen and the pain radiates from them. It does appear different than before the surgery. Every step is painful, and even just sitting is horrible. The only position semi-comfortable is in the recliner, leaned back, sitting indian-style with my knees, calves and feet on a pillow.

As for the game plan, I have a few things I know need to do. 1) Make an appointment with my primary care doctor. My mom thinks I could have celiac disease so I'm going to get tested. Brad wants me to get tested for Lyme again, since I did have it for four years as a kid. I'm not as convinced on either, but we'll see what the tests say. 2) Make an appointment with a rheumatologist. My ANA count is still too high and my platelet count still too low. 3) Make an appointment with the hand surgeon and come up with a date for the carpal tunnel surgery. The soonest they could get me in for a visit is mid-July, so I'm going to play the "privileged" card here and see if my dad can talk with the doctor and get me in sooner. The doctor is also the chief medical officer so they work together daily and have a good relationship. Compared to everything else I've been through the hand surgery should be a pretty simple procedure and recovery. I just need to time it correctly so I'm not having it done during an important time in the work cycle.

I can't say I'm happy to still be in this position, but there's nothing I can do about it. I'm a bit sick of it all, but I don't have a choice in the matter. But...there are worse things.

5 months, 4 days

2009-05-19T17:49:00.003-04:00

Five months ago today I was back at my hotel after a four day stay in the hospital. I had a back brace, a walker, and drove Brad and my mom crazy in trying to get a hotel room chair fitted just right so I could sit in it comfortably (it took six pillows). I had over 50 staples in me (front and back), and was just starting to eat food again.

I can't complain. No more back brace, no walker. The incisions have healed nicely. I still have trouble getting comfortable, but I only need two pillows these days instead of six. The best part is that I can do it on my own. Again, I can't complain.

As this is a journal for me to track my progress and to refer to as I visit future doctors - and there will be more visits - I will state that I am still in pain. A lot of pain, mostly in my legs from my hips to my toes. I'm having difficulty walking, and tend to shuffle and limp about. Sleeping is getting more difficult again, and the numbness in my hands and arms is returning. But you know what? Life goes on. I'm keeping busy with work and trying to do as much normal stuff as possible. I know it's not "normal" for most people, but it's the closest I can be to it right now for me. I'm forced to wait on more physician visits, more tests, more results. Until then my plan is to just keep going along. I may struggle to walk across a room, and I may not be able to do a lot normal activities that others can, but I'm here. I don't think I have a life threatening disease, so who am I to complain? It certainly doesn't do any good to do so, so why bother?

So today I choose to look at the progress I have made. Many have had similar surgeries and were still home bound at this point. I was working from my hospital bed right after my surgery. I was back at work part time in a month, and drove to Baltimore - a 6-1/2 hour trip - in less than two months after the surgery. The bone has grown in where it needs to, I have good mobility in my spine, and now that I don't have physical therapy messing me up my back is feeling great. And most importantly, I survived a surgery that was considered unbelievably high-risk; honestly, very few of you know the dangers that were involved and how often I was told that I could easily die on the table or in the days following. Fusions are not as dangerous, but taking that artificial disc out was. I feel indescribably lucky to be here.

So, all in all, not a bad five months. I think it's better to look at progress in the long term vs. short term. It's harder to see progress week by week. Today I needed to take a look at the bigger picture - my "five month" picture. And while it's nowhere near perfect, it's not bad either.

May 7 Appt

2009-05-08T11:58:00.002-04:00

I'm writing this half awake, but will try to be short and coherent. I went to Baltimore yesterday, ended up driving. It just didn't make sense to spend so much money to fly there and rent a car, and I do usually enjoy driving if the pain is manageable. The appointment was at 2pm, so I didn't have to leave early to get there on time.

The surgeon was late seeing me - almost two hours late, which I'm used to here in Cleveland but not with him. Busy day. We only spent about 10 minutes together, but we went through the newest x-rays and in terms of L5/S1, everything is perfect. Bone has grown in perfectly, the alignment is perfect and the other discs above it are all still aligned (which can be a concern with fusion, I guess). The surgeon agreed with me to stop attending physical therapy and to just do my own routine, which I was happy with. I know what I can and cannot do, and we have a health center about 10 minutes from here that we've belonged to in the past that I'll just start using again. He stated that based on the condition he found all of the old hardware in my back, it had appeared to be pressing on several nerves and said it would take time for those nerves to heal. We discussed my most recent blood results and he agreed that a rhuematologist was a logical path to follow. If I can't find a good one here, then he offered to hook me up with one there. Obviously a Cleveland doctor would be more convenient, and I just happened to receive an email from a friend of mine today about a good guy to see (thank you, Donna!).

In regards to how I am doing compared to others in my position, I guess I am ahead of the pack. The surgeon thought I was doing amazing for a 6-month followup, but when I reminded him it wasn't quite 5-months yet he said "even more amazing." He asked if I had returned to work, and reminded him that I had returned back in January, which once again he was impressed with, along with the fact that I drove there and back. He gave me a rating of a "5 out of 5" and said he'd like to see me in December to see where I'm at a year after the surgery. Was told I should still expect pain from the nerve damage and from the other mysterious symptoms I'm experiencing, so I should continue to take medications as needed.

I stayed at the hospital for about 30 minutes after the appointment to get online and do a few work things that I couldn't do from my phone, then got back in the car and headed home. I was going to try a new route through Pennsylvania since I-76 was just all construction (with little activity, at least driving to Maryland; there was more activity in the evening), but in Harrisburg I missed my chance and ended up going the same way home. With the hills and mountains it's a tough state to drive through, as there are very few roads that head northwest/southeast (most head northeast/southwest), and very few main roads in general. Construction and all of the cops they have on the road make it a tough state to navigate through, and I'm surprised I didn't get a ticket for something along the way. There are so many places where they have the speed limit down to 40 mph for no reason - I think - other than to make it a speed trap. I got to spend about three hours on the phone with a friend of mine I hadn't spoken to in a long time which certainly helped the trip (thank you Moe!), but arrived home at 11:45pm very sore and very awake. I think I finally fell asleep around 3am, then woke up around 10:30 as I had a few things for work to do at home before noon. I don' know why I'm so tired, but I am. I have a feeling I'll be taking an afternoon nap.

So I survived the trip ok. I need to get ready for the day and head over to my primary care office to pick up an order for blood work #2; they are going to test the platelet count again. I'm a bit worried it will be lower (don't ask me why, it's not like my brain can tell), but there's nothing I can do about it this weekend. Brad starts a one-week intensive class tomorrow that lasts a week, so I'll hardly see him this upcoming week. After this class he'll only have one more left before he's done with his MBA, so we're both happy about that. Our summer is pretty free, and hopefully I can get some sort of diagnosis/treatment that will allow me to do some traveling and enjoy life.

Thank you all out there for the well wishes. I hope you all are having a great week, and have a great Mother's Day weekend to all you mom's out there. To my mom and Grandma Grimm, I want to give a special shout-out, as I would not be who I am without these two great ladies. I really lucked out in the family department.

Results - Part 2

2009-05-04T20:54:00.001-04:00

I received the rest of my test results on Friday. Thyroid and antibodies were normal, but my anti-nuclear antibody (ANA) count was still just as high in one test but lower in a second test. (They look at the count two ways). I am going to be referred to a rheumatologist (this time not a Cleveland Clinic one), and will have my platelet count tested again at the end of this week. I'm hoping it's above 19,000 and not lower.

My weekend was hell. I'm still on some paid meds, and had been working so much I didn't realize how close I was to running out of my key one. I placed the call Friday morning, but the only doctor who would normally handle the prescriptions was out getting married, so no prescription refill for me. Knowing I had to conserve what I had, I was basically med-free all weekend and it was a huge wake-up call. I am far from being cured.

On several occasions I debated in my head whether to head to an ER, but was in such a messed up state that I couldn't think straight and ended up staying at home all weekend, going from chair to couch to bed, with pillows and various positions, trying to get the pain in my legs and back to settle down with no success. I saved what little medication I had for the evening time so I could get a little sleep, which helped only a little on Friday and Saturday but luckily on Sunday evening I was finally able to rest successfully, only waking up a few times. I'm sure I drove Brad crazy, as I was literally unable to sit or lie still most of the weekend, desperately trying to get the pain to get to a level that I could tolerate. I was a useless wreck of a person, going crazy in my own mind as to why I was going through this torture.

One reason for my situation is physical therapy. I had no back pain when I started my sessions, but I do now. I find that further I get from my last appointment, the better I feel. Today is Monday, it's been five days since my last appointment and my back is finally not killing me like it was all weekend. It was like that last week as well; I had four days of torture (but I had medications to help), then on day four things settled down, I went to physical therapy and by that evening I was miserable again. So no more physical therapy for me, not unless someone can give me a good reason why.

As for everything else, I have no explanation. I saw the last 15 minutes of a show called Mystery Diagnosis on Saturday evening. Had never seen the show, but while Brad was upstairs decided to tune in. Ironically it was about a 40-some year old woman with similar symptoms and almost identical ANA results. It took her nine months for a diagnosis, but in the end she had an auto-immune disease called Scleroderma. She was undiagnosed the first time she saw a rheumatologist because she showed no outward physical signs of an auto-immune illness. I found myself in tears...the story hit too close to home. I felt horrible for her. In some ways I was jealous it only took her nine months of questioning and tests. In other ways I feared a similar fate, a diagnosis with no treatment options. I doubt I have what she has, but each day that goes by makes it more likely that the nickel wasn't the cause of my ills after all. The surgery took away the back pain (as long as I keep the physical therapy people away from me), but I'm still not right. My blood work proves that.

So while this weekend was a waste of time, this week I must get back to being productive at work and prepare for the long drive and back (all in one day) to/from Baltimore to see the spine surgeon for a follow-up. I'm hoping there might be someone he can recommend there, as I have little faith in the doctors in this town. I guess we'll see. At least they refilled my medication this afternoon, so I will actually be able to have a good night's sleep. I hate taking medications, but it's obvious that right now that is the only way I can be a semi-productive individual in society.

Results - Part 1

2009-04-26T10:52:00.004-04:00

I saw my primary care physician on Friday and blood work was ordered - platelet count, ANA level and thyroid levels. The platelet count is one that is done immediately, and unfortunately by yesterday afternoon I found a message on our answering machine saying my count was 19,000. As we were out most of yesterday, the doctor on call called again at 10:30pm, stating her concern, blah blah blah, I've heard it all before.

To say I'm disappointed is an understatement. More like crushed. I need to see the other results before I have a clear picture of things. It will probably be several more days before I know the rest of the picture.

It's frustrating. I have no symptoms that go with a low platelet count. I have a paper cut, I don't bleed more than any normal person. I'm not having nose or gum bleeds, or other symptoms that usually go along with a low platelet count. I know it was 110,000 February 2008, which was below the norm but not alarming; what happened since then? Physical therapy has made the pain worse, not better. I was doing so much better in late February/early March, but I just can't seem to get back to that place. I wonder what my platelet count would have been then if I had a chance to see the doctor at that time.

So I'm now back in horrible pain, low platelet count and my spirits are pretty down. Basically right where I was six months ago.

It's a Sunday. Nothing I can do. Today the plan is to do some work from home, and to maybe work on priming our downstairs woodwork in the kitchen, dining room and bathroom area as we're getting Villa Stone tile put in in a few weeks. We already painted the woodwork in our living room white shortly after we moved in, and it looks amazing. It's been a goal of mine to paint the rest of it, and now I have motivation to at least finish the first floor before the new flooring is in. That way I don't have to worry if a little white paint gets on our current cheap vinyl flooring. I was waiting until I felt better, but now I'm not convinced that will ever happen. Life goes on.

Maybe the other tests will show some improvement, but maybe they won't. Until I know those results I have no options but to wait. I know this is a "downer" in regards to a post, but I'm pretty down right now and to write with positivity and happiness would be a complete lie. As I've mentioned before, this is not just an update for those I know, but a record for myself to refer to for future doctors visits and who knows what else in the future. Don't worry about me, I'm unfortunately used to all of this. And after my last physical therapy appointment next week I should be back to minimal back pain, so at least the surgery fixed something.

Week 17/18

2009-04-21T12:37:00.001-04:00

I'm combining two weeks progress here. April 15 marked my four month anniversary of my surgery; April 14 marked the two-month mark of getting the IVC filter removed. How am I doing? Right now - horrible. Today has been my best day in a few weeks, but that is not saying much.

The pain is different from before the surgery, but I can now officially say that physical therapy has made things drastically worse, not better. That was confirmed last Thursday when I went in for my appointment and found I had no reflex in in my right foot, and couldn't stand on my right leg, toes, or heal. After an assessment by the owner and the individual I was working with that day, they came to the conclusion that everything they have had me doing has been wrong. It appears that the stretches and exercises have put pressure on my nerve canal, so I'm now experiencing horrible, crippling nerve pain. That was actually somewhat good news...they could tell by certain movements that the pain was nerve-related and not something else. The bad news is that I've hardly been able to walk or move now for the last few weeks, and the pain has made life pretty miserable.

My surgeon wants me to stick with physical therapy, as I only have three more visits left. The thought is that if they keep working with me to get things back to normal that hopefully I'll get some relief soon. I will say that this morning I could actually walk semi-normally instead of my normal shuffle/struggle to move one foot a centimeter at a time. For the time being I'm not doing any stretches or exercise machine work; everything revolves around movements to take pressure off the nerve canal and electro-acupuncture. I was basically told that in my current position, even standing or walking would just aggravate things, which it does.

I do have an appointment with my primary care doc this Friday, so I'm sure she'll do some blood work and who knows what else. I will stress that my pain does feel different than before...I'm just back to being as miserable, at least these past few weeks. If I'm behind on correspondence, it's because I'm once again pretty much sticking to work and then trying to rest and calm down the pain when I'm home. I find it very hard to write when I feel so miserable; all I want to do is to try and shut my brain down and preferably sleep so I don't have to be awake for the torture. Though it takes me a long time to get to sleep, once I do I'm at least able to sleep through the night. Thank goodness for little positive things.

I'll write more next week, as I'm sure I'll have some blood test results and such to share. I'm a bit nervous, since it will be interesting to see where my numbers are - especially my ANA and platelet count.

Week 16

2009-04-10T09:30:00.002-04:00

I know some of you still read this thing, so thank you. Hopefully I don't bore people too much. Part of my purpose in this blog is to have a record of what I've gone through; a journal that could potentially be used to help others, or to help myself if the surgery does not provide the outcome I had hoped. My memory is still not what it once was, and having a written record definitely helps. I actually have two other blogs that I have used in the past, and have gone back to them on many occasions to help piece together my story when I see new physicians or talk to others that have similar issues.

I'm at week 16 since my surgery, and it's hard to believe four months have gone by. A lot has happened, yet the time frame seems shorter. Our lives have been in such chaos for so many months that I think the whole last year just seems like a blur. Somewhat unproductive, a little depressing and frustrating, but mostly exhausting. Right now we're in a place of calmness, and it's just very odd. Unfortunately I don't think it will stay that way very long, but hopefully it will be replaced with more positive events than negative.

If I'm being truthful, my health has actually declined these last several weeks. Before going to Iowa I was noticing some real improvements with pain levels, but I've now been going backwards for about a month. At first I thought maybe it was all of the traveling, sitting, uncomfortable hotel beds, etc. But we've now been home for over two weeks and I'm still not back to where I was.

I'm not going to worry yet. I've been really focused on catching up at work and putting in very long hours, and now that I feel I'm at a reasonable point there I can start focusing on my personal life. I need to stop and really study what I'm doing now vs. what I was doing a month ago. What I'm eating, drinking; what vitamins I'm taking, what activities I'm doing, etc. I also have to factor in weather. Weather kills me, especially when there are drastic swings, which is mostly what these last few weeks have been. Hopefully most of my problems lie there, but I don't think that is the whole issue. I just need time to stop and analyze, and luckily I now have that time.

I am on week three of physical therapy, and I think it's going well. They have a huge variety of weight/motion machines, that work various parts of my body. I'm doing better than expected (per their comments). I go twice a week, and starting this week one of therapists began microalignment therapy. With only light touches and some light pulling of my legs, she was able to improve my pain levels. It was really odd, as I could feel things shifting in my body, which she said were basically toxins, scar tissue, things out of alignment, etc. She worked my legs, back and mid-body, and said that things are pretty messed up throughout my whole body. Not a shock considering everything I've been through; I've always said that after the surgery I would need almost a complete body re-build. Nothing can be fixed in a day, but can be improved with several sessions. I guess once something is "fixed" it doesn't revert back, at least not in the short term. She told me I would probably not feel well for the next day or two, and she was right...but now it's been three days and I actually feel pretty good. I will now be meeting with her once a week for this treatment, and I look forward to seeing what else she can do. I put it in the same category as acupuncture; it's not something I would normally believe in, but having experienced it I can say that it definitely works.

I will be meeting with my Baltimore surgeon in May, which will hopefully be my last visit for at least a few months. Instead of driving I think I'll do a fly in/fly out thing instead. I also need to reschedule an appointment with my primary care physician and have blood work completed; I need to see where key levels are at. I was to go in March but had to cancel twice. Now I'm sort of avoiding, as I want to see her when I'm feeling decent. And maybe I'm a bit afraid; if the levels of my ANA and platelets are the same, then I still have something wrong with me. I have to stop procrastinating.

Happy Easter to all, and hopefully next week my update will reflect more improvement.

Week 15

2009-03-29T17:58:00.006-04:00

First, thanks to all of you for your prayers, emails, cards, donations, gifts, etc. in regards to Brad's mom. Everything went very smoothly, and Brad is doing as well as can be expected. He handled everything so well, and made every decision by asking himself "What would mom want?" Right now there is more relief that Carolyn is finally at peace; hopefully with her husband, able to walk and see, and greeting all of those who went before her and looking over all of us she left behind. She suffered greatly in her final days, and none of us wanted that. We are grateful for all who attended the visitation and funeral, and I want to thank my Grimm family for all that they did - including sending a family "representative" - and for their wonderful words and support. I did finally meet Brad's brother for the first time, and my niece and nephew...who are 3-1/2 year old twins and absolutely adorable. I also had the opportunity to meet additional members of Brad's family, and finally went to the tavern his parents owned back in the 80's for the first time.

The last few weeks have been anything but normal. It's now been 15 weeks since my surgery, and the big question I'm asked after "How is Brad doing?" is how am I doing. With all of the driving, flying, hotel stays, pulling/lifting luggage and physical activity, I held up pretty well. If this had all happened before my surgery in December, I wouldn't have lasted a day. While I was sore, stiff and ready to go home near the end, I survived ok. I'm still sore and worse off than I was before all of this, but I've had much worse days. I was happy with my abilities these last couple of weeks.

I had to postpone my physical therapy by two weeks, so I had my first session last Friday. Though I was there an hour, it was mostly just an assessment, discussion of what I would like to accomplish, and an introduction to the staff. There are only a few individuals there, but they are seasoned professionals. The place I went to back in 2005 was mostly filled with students-in-training, and that was a mess. Though this place does not have before/after work hours, these people know what they are doing and the facilities are great. It sounds like I will mostly be working with the owner, and I'm looking forward to really getting into things.

This has been a most unusual year and month. I have follow-up appointments with my hand surgeon and spine surgeon, but plan on pushing them back a few weeks given what has transpired. I would like a chance to see how I handle PT before I have follow-up appointments, especially with my spine surgeon. Driving to Maryland and back is time consuming and costs money, and I want to make sure I can get the most benefit from the trip as possible. I also need to reschedule my appointment with my primary care physician, as I need to see where my counts are at. I've been feeling very tired lately (more than usual and beyond my control), and I'm wondering if my thyroid is low.

So what's in store for us now? I think the biggest thing is just trying to get back into a normal life. We're both behind in our jobs, and Brad has a bit of catching up to do in his classes. We need to get back into a regular schedule; I need to work on getting healthier and feeling better, and we'd like to start some home remodeling projects that have been on our mind for some time. We need to save some money; the last few months have been expensive. We'd like to go on some mini-vacations over the summer, including going to Cape Cod to see my brother as he is doing lighting design for several theatre productions there over the summer. I think overall we just hope for some reasonably peaceful months ahead. Just a little break from everything, time to mentally adjust to all of the changes, and most importantly...quality time with each other and those we care most about.

Carolyn Fairfield - March 20, 2009

2009-03-20T02:03:00.004-04:00

I know many of you - especially my family and friends - follow this blog and have been following the progress with Brad's mom Carolyn, so I felt it important to post it here that she passed away around 12:30am this morning. Brad was by her side when it happened, but unfortunately was the only one there with her at the time. On the plus side, he was there for his mom and I know that was very important for him to have her not be alone. His brother is back in Iowa from Japan, and his sister and her children are driving up from Dallas on Friday/Saturday. I'm flying into to Omaha in the evening; that was my original plan, and Brad did not feel a need to change it at this time. We'll know by the end of the day in regards to when the visitation and funeral will be.

Carolyn was an absolutely amazing woman who touched an unbelievable amount of lives during her stay here on Earth. I do not think there was a single person she met who wasn't influenced positively by her in some way. She was incredibly intelligent; her memory, almost up to her final days, was impeccable. She had a great appreciation and interest in people, and had an interest in each of their stories. She saw the good in people, and did her part to better her community and provide support to the organizations within it. Carolyn truly cared about each individual she met, and was the first to lend support. She looked out for others, and was always lending a hand to those who were down on their luck or in need. She was a faithful Methodist, and never feared death even though she faced it for over two years. Carolyn had a great love for her husband, children and grandchildren, and of course for her siblings and other family members. And though she faced difficult health problems for many years, she still faced life with a great sense of humor, grace, and an unbelievable amount of strength and resolve.

Carolyn welcomed me with open arms into the family back in 2002; I, on a personal note, feel so blessed for the time I got to spend with her. I am grateful that I had an opportunity to get to know her. I am thankful for the stories and family history she shared. I will never forget her intelligence, caring and wit, especially because I see those traits shine clearly in her son - my husband, Brad - every day. Though she is no longer with us here, she definitely will live on in her children and grandchildren.

I don't usually go around speaking for Brad, but I know that he is unbelievably grateful for all of the prayers and support you have offered for his mom, for him and his family. These situations are never easy, but I know that it meant - and means - a lot to him to have that kind of love and support surrounding him. We know that Carolyn is in a better place, and certainly left behind a world that was better off for her being in it. We are grateful that she is finally at peace, though we will miss her so.

Update - Brad's Mom 3/19 @ 4:30

2009-03-19T16:33:00.000-04:00

From Brad:

When we got here today, two of the staff were down with mom. They had also called hospice. Mom continues to decline. They are giving her morphine regularly. I don't think she has had anything to eat since at least Tuesday, and very little to drink either.

Mary (the hospice nurse) wasn't going to try to predict anything. She did say that she is on the downhill side and probably would not survive through the weekend. Mom's blood pressure was normal yesterday (120 over 60). Today it was down to 80 something over 45. Heartrate was still up around 80 but somewhat irregular.

Brad

Brad's Mom - Update 3/18

2009-03-18T09:40:00.002-04:00

Brad and I went to see his mom this past Friday, and things are not looking good. While she has managed to last almost seven weeks since she went off dialysis, she finally started to take a major downward turn around Wednesday/Thursday last week. Brad is staying in Iowa until the end; I unfortunately stayed through Monday afternoon - tried to get out of Des Moines but my flight was canceled - and eventually arrived home Tuesday evening. It was a very tough decision, but given how much time I was out of the office in December and January with my surgery I didn't think I could get away with being gone an indefinite amount of time. Brad's brother is flying in from Japan and should be there tonight around midnight. Though Brad's mom is pretty unresponsive at this point, I'm hoping she will have enough of her faculties to know he is there.

Brad sent an email last night, and for those of you not on his list here it is. We greatly appreciate all of your prayers and thoughts; it is a very difficult time, and it gives Brad great comfort to know how many people have his mom in their thoughts.

Just wanted to send out another update on mom. I just wish it could be more positive than it is.

Carrie and I both had a three day weekend, and decided to drive to Iowa to see her. Mom's health continues to deteriorate. She sleeps most of the time now. When she is awake she is for the most part unresponsive. She will look at whoever is talking, and nod her head when asked a question. I'm unsure if her unresponsiveness is just because she is too tired to respond, or if she is not able to. Kidney failure does affect things like that. But also on occasion she will talk to you with amazing clarity, but those occasions are getting more rare.

Mom is not eating or drinking much if any at all. Yesterday I think she only had a couple of bites of a cheese sandwich. Her kidneys are not working hardly at all at this point, which is causing the fluid retention in her legs, mid-section and starting to show up in her arms.

Originally we were only going to stay the weekend, but I have decided to stay for a while longer. Carrie was to fly out yesterday afternoon from Des Moines, but her flight was canceled. She got out this morning, but they said her connecting flight didn't have any available seats on it. Hopefully she will make it back to Cleveland by the end of the day.

Brad

P.S. Carrie did make it back to Cleveland.

Brad's Mom - Update from Iowa

2009-03-14T17:11:00.003-04:00

I have a faint internet signal, but I have a signal none the less. I'm currently at the nursing home with Brad and his mom in Anita, Iowa. Most of you may remember that Brad's mom went off dialysis at the end of January, and at the time it was assumed she would last one to two weeks after. It's now going on week 7, and while Carolyn has defied all expectations, the last few days have brought a significant decline. We received a call from a family member on Thursday evening when we were in the car, heading west; while we were told not to drive through the night, the local family was noticing a decline. It was good timing on our part. We arrived on Friday around 1pm, and during that time we have seen her continue to decline.

Carolyn is at the point where she is almost completely unable to eat or drink. Yesterday she was able to get down some applesauce, with some problems but yet ate her tiny serving. Today she finally requested some jello around 3:30, but it was difficult for her to eat. Over the last 24 hours she is now finally accepting hydrocodone for her pain; she had been very resistant, but now she is requesting it every four hours. You can tell almost immediately that it relieves some of the pain, as her face becomes much more relaxed. After about 15 minutes she then goes off to sleep for a few hours. She refuses to take anything stronger as she does not like the taste, though the nursing and hospice staff say it would certainly help her more. Carolyn is not talking much, and does not often respond when you ask her a question. You can tell she is very uncomfortable and frustrated; she thought she would be gone weeks ago. It appears her lungs are starting to fill with fluid, and she has a large build-up of fluid around her mid-section. She mostly stays in bed, though she can sit up on her own fairly quickly and easily. Getting off the bed is very difficult and tiresome, so she is in/on the bed 99.9% of the time.

There have been many visitors that come in and out during the day, which is wonderful. The evening nursing staff seems great and very on top of things. The care isn't perfect, but it's good for the most part.

While we went here thinking it would be a weekend visit, after witnessing Carolyn's condition Brad has decided to stay. I couldn't find any flights out Sunday from Omaha or Des Moines (that were under $500), but did find a rental car. My original thought was to go back to Cleveland, as I've missed so much work with my health issues that I don't know if I can afford to stay here indefinitely. However, my heart is with Brad and immediately after I made the Hertz reservation I started rethinking my decision. I've decided to stay here at least through Sunday; we will see how things evolve. Maybe I'll go home Monday, or stay until Tuesday. I don't think I can stay here a week, but given the quick decline I just can't leave yet.

That is the situation currently. Please keep Carolyn and Brad in your prayers. She has been through so much, and we just want her to be at peace. Everyone at the nursing home is amazed by how long she has lasted, and they have said what a great attitude she has had about everything. She is an amazing woman, and we all want what is best for her.

Week 13

2009-03-12T05:45:00.001-04:00

This one will be brief. I noticed a big change last week in regards to pain levels dropping drastically. This week has been fairly stable. I notice more pain when there are drastic weather changes (which there have been several), but still a positive difference. I'm taking about 1/4 to 1/3 of the medications I was taking two weeks ago, so to me that's a telltale sign.

Brad and I are leaving for Iowa to see his mom after work today. We'll be spending the night in La Salle/Peru, IL, and then should be able to be in Adair around noon-1pm on Friday. The plan is that we will head home on Sunday, unless it looks like Brad should stay. In that case I'll fly back home Sunday, as I unfortunately need to be at work Monday unless circumstances are very critical. I'm glad to be able to go with Brad and to see my mother-in-law, but it will also be a big test in terms of how I physically handle the travel. I think I'll do fine, and am grateful that I have had a relatively quick recovery (compared to other fusion patients), so I will not complain. My main concern is for Brad and his mom, and trying to do anything I can to provide support.

I will try to post info on how Brad's mom is doing from the road depending on time/connectivity availability.

Update: Brad's Mom 3/11/09

2009-03-11T16:35:00.002-04:00

As always, I thought I would post the most recent email Brad sent out regarding his mother:

I just talked with mom's Hospice nurse. Mom has had quite a bit of nausea the past couple of days. It is hard for her to keep food down, and she really doesn't feel like eating much besides bananas and strawberries. I can think of worse things, but suppose I would get tired of those too after a while. She is having quite a bit of fluid build-up in her legs, and around her mid section, and is starting to show signs of the build-up of toxins in her skin.

She hasn't been very talkative the past couple of times I've talked with her. I probably wouldn't want to talk much either if I felt that sick to my stomach, but it does make it kind of difficult to tell how clear she is as well.

We are being told now that the fluid build-up is enough, combined with the toxins that it could cause a heart attack.

Mom is still in relatively good spirits, considering.

Week 12

2009-03-05T06:00:00.000-05:00

First, a quick update on Brad's mom. While she seems to have good days and bad, her memory and concentration seems to be going. She is very tired, but not getting much sleep. She says she still feels good, but it's harder to have a conversation with her. Brad's sister is doing a great job keeping in touch with hospice to monitor her condition, and Brad will travel to be with her when it appears the end is near; I'm hoping I will be able to go along as well.

In terms of my condition, I made some progress this week. I met, for the first time, the chief medical officer at the clinic my dad works at. He is a hand surgeon, and offered to see me given the amount of pain I've been suffering with over the last month and a half with in my hands and arms. This visit was of special importance, as the surgeon has offered advice and support to me through my father over the last several years, so it was a pleasure to finally meet him in person. It turns out he suffered from an "undiagnosable" disease in his 20's when he was starting med school, and while he eventually was diagnosed he told me he had a special place in his heart for me as he knows what I've been going through. It's the first person I've met that could relate to me, and while I would never wish for anyone to go through what I've been through, it created an instant understanding and bond.

They did x-rays of my hands and wrists, and to my amazement there was no bone damage. Considering there is joint degeneration in my knees and ankles, I was happily surprised. The doctor did a quick examination and determined that I was probably suffering from carpal tunnel. I was diagnosed with this in 1998; mild in my left hand, moderate in my right. I had a few injections, but the last one was back in 2003. I really hadn't suffered from any pain since that time, but with all of the time I spent glued to my laptop in December and January it likely pushed me over the edge. I was given an injection in each hand along with splints. While my fingers are still a bit numb, the pain is 98% gone. I will follow up with the surgeon at the end of the month. If the pain has returned then he will recommend surgery, which is really a minor procedure compared to everything else I've been through. If I'm still doing well and not experiencing pain, then we'll hold off on the surgery until the symptoms flare up again.

The hand surgeon was also kind enough to recommend two other items. First, he suggested that I approach my primary care physician regarding thyroid medicine. While my numbers have always been on the "normal" side, he said with everything I've been through my number should ideally be on the high side of normal. Last time it was checked it was on the lower-to-mid side. He thought medication might help make me feel a bit better. He also gave me the name of a physical therapist who takes unusual cases and provides some unusual treatments such as underwater treadmill therapy. Considering the enormous toll my condition has taken on my body in three years, I'm very excited about this opportunity and hope to be able to schedule an appointment soon. I have clearance to begin therapy for my back, but I'm actually more concerned in rebuilding my legs, which I think have been the most effected from all of this.

I'm seeing my primary care physician next Friday; I'd like to have blood work completed again to see where my numbers are. Also, since the IVC filter was removed, I've been noticing that when I come home from work my ankles are very swollen. Usually 30 minutes with my feet up in the lounge chair solves that problem, but obviously want to make sure there is no blood clot or other serious issue popping up.

With my hand/arm pain now gone, I've drastically reduced my medications this week. I'm mostly taking just normal Aleve for pain. My low back has been aching a little bit the last two days, but it's minor. I've been waking up in the morning with dizziness and some morning sickness over the last couple of weeks, but I went through a similar thing when I was getting treated for Lyme back in 1992. It makes it difficult to want to get out of bed and start the day, but I'm managing. And for the record, no, not pregnant! I suspect I'm just dealing with a lot of changes in my system. We'll see what the blood work shows.

So that is where I stand now. I'm hoping to get caught up on some correspondence over the weekend, as I had really stopped cold-turkey with emails and calls. As always, I use what little physical capabilities I have towards my job, and everything else suffers. Have to pay the bills, and given the economy I feel grateful to have a job with relative stability. I certainly have to do everything I can to hold on to that, though I hate that I give up so much on a personal level. Hopefully I will soon be able to find a better balance in life.

This has been a long post, but this should give you all a clear picture of where I'm at now. I'll still continue to post weekly, though I'm looking forward to the day where I can say "I'm done with this chapter of my life, and here is my last blog entry." That would certainly be a day of celebration for me. Thank you all who sent Brad and I anniversary cards this week; we enjoyed them all. Given everything going on we did not do much to celebrate other than a nice dinner on Saturday (Brad had class on Monday), but we made a promise to go away somewhere for a vacation when things have settled a few months from now.

I hope all of you out there are doing well, are happy and healthy, and enjoying life to the fullest.

Week 11 (almost 12)

2009-02-28T13:30:00.001-05:00

Good news and bad news. I'll start with the bad first.

The Bad
I'm now certain that the arm/hand pain I've been really struggling with over the past month is unrelated to the metal issue. The pain continues to worsen, and it's making my life miserable. Basically both arms and hands feel like I have a thousand needles in them, my hands are constantly burning, and I've lost feeling in my fingers. Since I spend most of my day at a keyboard, you can imagine the difficulty there. Sleeping is almost impossible; I spend hours trying to find a comfortable position that reduces the pain to a level where I can actually fall asleep. How I position my neck, shoulders and wrists can effect the pain level. Last night was the first night I got 4-1/2 hours of solid sleep, but it took a lot of time, positioning and medications to get to that point. The last several nights I've not been able to sleep more than 20 minute increments; in terms of sleep, it's worse than before the surgery.

I have reason to believe that the disc I herniated in my neck back in 1992 - though it really hasn't given me problems since 1993/94 - is the cause. I'm going to start with seeing an upper extremities ortho surgeon who my dad has a good relationship with, as he offered to see me on Tuesday. If it's shoulder/arm/hand related, he can diagnose and treat. If not, then I have to make the decision which orthopedic spine surgeon to see. At this point I'm leaning towards the first spine surgeon, for a few reasons. One, he works at the clinic my dad works at so I can maybe get in a little quicker. Second, I'm hoping the treatment can be a cortisone injection; if it is, the pain mgmt physician at that same location is wonderful and I would trust him to do a good job. Though my most recent spine surgeon is my favorite, I feel my current situation would be too "average" for him, and I don't want to waste his time. He has a gift, and that's why he typically only takes difficult patients who need a rare/difficult surgery performed.

The Good
Though the upper extremity pain makes it difficult to think about anything else, I continue to notice positive changes in my back and legs. It's interesting, because it's almost like a transformation. I always felt like something was "eating away" at my bones and muscle. I'm not feeling that so much anymore. However, what I am feeling is almost like the "after-effect." My main leg complain is muscle pain, but it's different than before. In my mind, what I'm experiencing is something that could be taken care of with lots of physical therapy and time. My muscles are damaged, I've had to severely limit my activities over the last couple of years, and between the two my muscles need to be "rebuilt."

So in conclusion, while I feel I'm making some progress I'm still suffering a lot, just in a different way. It certainly would have been better had I not had this arm/hand thing pop up as I think I'd better be able to determine how things are progressing, but my health has not been, and will probably never be, an area where I'm "lucky" or even just normal. I think everyone has a certain part of their life where they struggle - mentally, professionally, relationships, health, etc. I've always been blessed with a wonderful family, a decent brain, a great husband and friends, good jobs...health is my area of struggle. And you know, the fact I have all of those other things going for me has made it possible for me to continue with a somewhat normal life despite the health stuff. I haven't given up yet, and certainly will not be giving up any time soon.

I hope everyone has/had a great weekend.

Brad's Mom - Update 2/25

2009-02-25T06:07:00.001-05:00

As always, I'm posting the most recent email Brad sent out regarding his mother, as some of you get your info through this blog vs. email.

I just wanted to do a quick update on mom.

It has been about three and a half weeks since mom's last dialysis treatment. She is still doing pretty good, but is starting to show signs that are indicative of the kidney failure. She gets tired much more easily. We are also seeing subtle changes in her mental state. The thing I notice is that it takes her a little more effort to find the words to say, which is not very characteristic of her. Maybe my assessment is incorrect, and I'm just boring the crap out of her when we talk, who knows.

Mom has recovered from her bout with the flu. They were able to give her something for the symptoms, and judging by my talks with her while they were giving her the stuff, it must have been pretty good. She has had a nagging cough though since she got the flu.

Mom continues to get visitors on a rather regular basis, which really brightens her day. Lori, Todd and I would really like to thank everyone who has stopped by to see her, or sent a note or a card, or for that matter everyone who has kept her in your thoughts and prayers.

Thank you,

Brad

Brad's Mom - Update

2009-02-23T13:48:00.002-05:00

Though Brad will probably send out an email update on his mom today or tomorrow (which I'll post on the blog), I thought I would let everyone know that she did seem to get over the flu ok. However, Brad and his sister noticed some changes in her this weekend when talking to her on the phone. While she still has her normal energy, some minor confusion has started taking place. I don't think it's completely obvious, but the kids have noticed the difference. I will keep this site updated, as I know many of you still reading it look for updates on Brad's mom, too.

Week 10 - And Six Days After

2009-02-19T18:03:00.002-05:00

It's now been six days since I had the IVC filter removed. The pain levels continue to inch down ever so slightly, and I feel little changes each day. It's like I told my case manager - this week the pain is bad but "tolerable", where as the last few weeks I would have welcomed getting hit by a bus, put in a coma...anything where I wouldn't have to feel the pain anymore as I was going out of my mind. There is an improvement, I just have a long way to go.

Currently all of my energy is going into my job, and by the time I get home at night I'm beat. While my hand pain is much better, it's still bad enough where I'm avoiding the computer when I get home. I'll know I'm making progress when I'm back to doing my evening emails, Facebook and blogs again on a regular basis, not to mention to occasional game of mahjong. When I don't even want to play a simple computer game you know I'm not well!

I'm on minimal pain medications that help me get through the day, but I'm still having trouble sleeping. It takes me forever to get comfortable, and sometimes "comfortable" is impossible to achieve. At least this past week I've been getting in at least 5 hours of sleep a night, so I'm grateful. I'm also grateful for our DirectTV, though the receiver has been freezing up a lot lately. When you can't hold a book to read, hold a phone to talk to your family/friends or type on a computer, at least the TV is there. Thank goodness for "The Office" and "Arrested Development"; they definitely help keep my mind off the pain. And though I've probably seen each episode 10+ times for this season, I'm also grateful for "Top Chef" as I just love that show.

I had orders last week to start physical therapy; I have to start looking into that. I have a follow-up to see my spine surgeon in April, and I know he'll want a status report at that time. Which reminds me...I forgot that I was to make an appointment for next week with the vascular surgeon as a follow-up to my procedure last week. Oops, completely forgot. I'm going to "blame" Brad, as they told me this information before I left the hospital...when I was heavily medicated, exhausted, in a lot of pain and really not paying attention! Given the distance, I'm guessing that all I really need to do is just do a call/check-in and let them know how I'm doing and that the site is healing well. I basically just have a small, circular scab on my collarbone, along with some light bruising from a few injections and pressure put on the area during the procedure. It looks like what you'd find after you have an IV taken out, but on a slightly larger scale. I think it's really minimal considering how big the IVC filter was. I don't know what they did to me during my spine surgery, but they did something around my neck area that looked much, much worse in terms of bruising and size!

So that's where I'm at. I'm hoping that a week from now I will be able to report continuous improvement. Given what I've seen over the last six days, I'm very optimistic. Again, this will take time. Tomorrow is a working Friday (we get every other Friday off where I work, as it's a 9/80 work schedule), so one more day and then it's the weekend. I'm looking forward to having some time at home, and will hopefully be feeling good enough to do some much needed cleaning and errands. As always, thank you to everyone for your emails and Facebook messages; I feel so disconnected from people lately, so it really brightens my day to read them.

Brad's Mom - Update

2009-02-16T09:00:00.003-05:00

Brad sent this email out last night regarding his mom, and as always I wanted to post it on the blog for those who did not receive the email:

I'm sorry that it's been a while since my last update.

Mom's last day of dialysis was Friday Jan. 30th, so it's been over two weeks since she stopped treatments. She was continuing to do well, until this weekend. She hasn't necessarily taken a turn for the worse, but she has come down with a pretty bad case of the flu.

We don't know if her condition made her more prone to catch the flu, will make the flu symptoms worse or what the flu will mean to her prognosis. Only time will tell. When I talked to her last night she sounded pretty miserable and wasn't able to talk very long before she felt she needed to lay down again. She is hoping that they can give her something to help the vomiting.

Before she came down with the flu we noticed that she is starting to get tired more easily, which is to be expected.

Thank you everyone for keeping her in your thoughts and prayers.

Brad Fairfield

Week 10

2009-02-15T20:16:00.003-05:00

Made it back to Ohio on Saturday around 7pm. Brad drove the whole trip, which I was grateful for. Was - and still am - feeling very exhausted from the procedure and just everything I have been through the last several weeks. We attempted to stop in Pittsburgh for a nice early Valentine's Day dinner, with no luck; every place was swamped. In the end we settled for picking up some Bob Evans down the street and eating at home.

I think it will take several weeks before I know the true outcome of these procedures I've had. I feel exhausted, yet the pain appears to be letting up a bit. I think my body chemistry is off and has a lot of "re-adjusting" to do. I feel overwhelmingly exhausted, weak and sick; try as I might, I'm having a hard time feeling "normal." I slept a lot over the weekend, and continue to feel tired. I'd love nothing more than to spend the week at home recuperating, but there is work to be done. I can only hope that once I get to work I'll find some energy to be productive, and that the days will go by quickly. I also must force myself to drink lots and lots of water (I'm horrible at that), and to eat as healthy as I can.

I doubt I'll post every day, but will definitely post every couple of days so you know if I'm seeing any improvement or not.

Filter Removal

2009-02-13T19:48:00.002-05:00

Arrived at the hospital at 6am and checked in. After going through the whole process, it was realized that lab messed up and just cross-typed my blood platelets yesterday and didn't do an actual count. So, I was wheeled into the Radiology area where the procedure was to be done, and ended up being delayed about two hours. My platelet count was 16 (hey, that was up from last Friday!), so they did the platelet transfusion which took about 25 minutes. In order to keep on schedule they had a few patients go in before me, so by the time I was wheeled in I was definitely ready to go.

The procedure at minimum was to take 45 minutes, but it went really smoothly and took closer to 20-25 per the staff. I was awake the whole time, though they gave me drugs on several attempts to put me in more of a sleep-yet-still-awake mode. They went in through my neck so my whole head was covered and I couldn't see anything. The surgeon spoke with me the whole time, telling me what he was doing, and before I knew it the thing was out. Afterwards the staff showed it to me, and it was pretty cool. A lot more connected pieces/parts than I thought it was back when they put it in, but was glad to see it out.

I was immediately given a chest xray and things looked clear. I was coughing up blood for about 20 minutes which freaked me out a bit, but was told it was normal. Sat in the recovery area for about 2 hours, got a turkey sandwich and a percocet for the arm/hand pain I was having. Got the discharge instructions and was back at the hotel by 1pm.

I basically slept most of the afternoon, though I'm in a lot of pain/discomfort. Brad was kind enough to go out and get dinner, so I thought it would be a good time to do a quick blog. I have a feeling I'll have a rough night, but have approval to drive back home tomorrow. I'm looking forward to it; things are just more comfortable there.

So this is now the time for "the big wait". I am currently nickel-free; what will happen now? If I get better, I'll probably be a case study. If I don't, then I have a lot of thinking to do as to where to go from here. No change in pain yet, but it hasn't even been 12 hours. I want to drink lots fluids, eat healthy, etc. My body has a lot going on and it's going to take some time for everything to be where it's suppose to be.

I hope everyone has a great weekend and Valentine's Day. I'll post when we're back in Ohio.

Week 9 - Day Before Procedure

2009-02-12T20:18:00.002-05:00

Hello from Baltimore. Brad and I left immediately for Maryland after work last night, which was interesting. High winds and rain through central PA; saw lots of transformers blow and at one point there was a tree that had fallen on the interstate, but no damage to us or anyone as far as we could tell. Made it to Cockeysville about midnight and fell asleep pretty instantly. It was a very long day. A long week, actually, and I'm pretty exhausted.

Today we went to the hospital and saw my spine surgeon first. Dr. McAfee is just the best, I must say. They did x-rays and everything looked perfect. Perfect bone growth, everything is in place. Based on how the x-rays looked and how I've been working and the fact I drove from Ohio to Maryland, he stated that I looked more like a patient who had surgery 4-6 months ago instead of 9 weeks ago. He couldn't believe I could drive that long of a distance, and immediately recorded it in his recorder where he gives his patient notes. I now will start therapy in Ohio to help rebuild my muscle strength, and will do a follow-up in two months. I have no restrictions, including no more medication restrictions.

The whole ortho staff was so friendly and warm to us. My case manager made sure that I was taken care of for the vascular procedure tomorrow, making sure that the correct lab work was going to be done, etc. She told me to call her and let her know how things went; they are all anxious to hear how it goes. It's really a great office.

I had my bloodwork done, but no call from the vascular office giving me the count or telling me to come in today. My guess is they will do a quick count in the morning and then do a transfusion. The surgeon wants my platelets at 50k, and I'd be amazed if they were at that level on their own. I could actually see the filter in my spine x-ray shot, and it's a lot bigger than I thought it was. I kept thinking it was some little thing, but in terms of length it's the size of a toothpick with three long prong-like arms that join together at the end. Now it makes a bit more sense why I might be reacting to it so badly.

WhileI was able to drive last night, my hands feel like they have a thousand pins in them today and my legs are killing me. We went to another Marriott hotel today (they have a promotion and to get points you have to stay at a minimum two locations so we're just playing the "game") around 2pm. We're staying in a Fairfield Inn that is across the road from the Residence Inn we stayed in back in December. We're in a mini-suite and it's an amazing hotel. It's so modern I feel like we're in a Westin Hotel. Everything is so modern and state-of-the-art. The beds are also new; we saw the delivery truck when we were here in December and were jealous, as the Residence Inn beds were horrible. This will be a good place to stay for a couple of days.

Tomorrow I check into the hospital at 6am, and then I think the procedure is scheduled for somewhere between 8-9am. I don't know what's involved, just that it will be longer than when they put it in, which took about 20 minutes. I'm guessing I could be at the hospital until at least 2pm, as last time they kept me several hours to make sure the drugs wore off, that I wasn't bleeding, etc. We'll then head back to the hotel and I'll rest for the day. Saturday the plan is to head home; hopefully weather will cooperate.

Well I can't type any more as the pain is too much, so I'm off for now. Thank you all again for your support; I know I'll be ok, I'm in great hands. I honestly wish I could go here for all of my medical care, it's just a wonderful environment and unlike any place I've ever been.

Week 9 - Finally!

2009-02-09T13:47:00.004-05:00

First, my apologies. I wrote this Monday but for some reason it didn't post; so this is really from Monday, though I'm posting on Tuesday. - CLF

To my shock there are people still reading this, so I better keep this thing up to date!

I have good news today. I finally got a hold of the vascular surgeon this afternoon, and he confirmed we will take care of my low platelet count there. He also confirmed I did not need to follow the treatment path the hematologist here recommended, thank goodness. I had already canceled it this morning, so that was a big relief there. Basically I will go in on Thursday, have the hospital lab test my count, and if it's lower than 50,000 they will arrange for a platelet transfusion either Thursday afternoon or Friday morning before the procedure.

I was originally going to drive to Maryland on Thursday morning, but will now likely drive there after work on Wednesday. I want to get my blood tested first thing on Thursday so there is time for the surgeon to decide how to handle my platelet count. In the early afternoon I meet with the spine surgeon, at which time I'll have x-rays done to see how the fusion has progressed. If things go well there, I could finally be cleared to start taking anti-inflammatory medications again. I don't anticipate any negatives on the film, as my back really feels great these days. I have sore moments, but it's more muscle-related than anything.

Another positive thing is that Brad might be able to go with me on this trip. His mom went off dialysis on January 30, but so far she is not showing signs of decline. We were thinking my mom would go with me for this, but if Brad's mom is still doing well he will join me. I love my mom and she's a wonderful caretaker and I have a lot of fun with her, but Brad and I have been through so many procedures together that we just "know the drill." It's sad, but we do! Plus I would likely be limited in how much I can drive, and I know my mom was dreading having to drive my car in the crazy Baltimore traffic!

It's amazing how a small, unknown hospital in a suburb of Maryland - and down the street from Johns Hopkins - has dealt so positively with my situation in complete contrast to the two big Cleveland health systems. I know that come Thursday and Friday that I will be in good hands.

I'll say it again - I appreciate all of the love, support and prayers from everyone. I certainly was not expecting how things played out these last several weeks, and I've needed every ounce of help I could get. I truly appreciate it.

End of Week 8

2009-02-08T13:48:00.002-05:00

Today I can type a little, so I'm taking advantage of it. It was a rough Thursday/Friday/Saturday, but here is the update.

I have still not been able to connect with my vascular surgeon. All I know is that my ortho case manager told me he had a plan to get me admitted into the hospital, and made it sound like I could bypass any crazy treatment the Ohio doctors wanted to put me through. But, I still have no confirmation on this.

On Friday I saw the hematologist and Brad was great enough to go along. The doc wanted to put me on a multi-week NPlate treatment, but when I told him I wanted to have my surgery on the 13th he then recommended Rituxan. Actually, he wanted to do another one of his crazy steroid treatments, but I told him my ortho office was against it due to the fusion.

The doctor and his nurse manager were unwilling to give us much information, including side effects on the Rituxan. Since we were there though, we had to schedule a time for the one-time treatment. I was scheduled for 10:30 on Monday (tomorrow), and was told it would take up to 6 hours to administer through an IV.

Rituxan is usually used for lymphoma patients. The hematologist wanted to try it, and told me that if he saw my platelet count raise at all that he'd approve me for surgery. However, despite the treatment it would not raise my count high enough and I'd have to have a platelet transfusion prior to the surgery on Friday. My platelet count - though I found out that evening - was a personal low of 9 on Friday. This was down from 32 on Tuesday and 25 on Monday. In other words, my platelet count is all over the place. What is so strange is that I have absolutely no symptoms. Even when they did the three blood tests this week there was no mass bleeding - or actually any real bleeding - afterwards. There was no bruising. I had a papercut, and was fine. It just doesn't make sense.

The hematologist and his nurse manager, in their own subtle way, made it clear that they think my issue is not related to nickle. They think it is ITP, which, other than the low platelet count, I do not have a single symptom of. They made it clear that they figured they would be seeing me again soon, after which we could discuss a long term treatment plan. I certainly hope in the end it is not ITP, but if it is, this is the last place on earth I'd go to.

After a lot of research, what I found out about Rituxan is that it has a lot of horrible side effects that can not only occur immediately during/after the administration, but up to 12 months after. They are also long-term and deadly. On a reputable site it said to check with your doctor before taking it if you have a low platelet count (which I do) and to check with your surgeon if you are to have a surgery (which I am).

This being said, I have come to the same conclusion I had in November. This hematologist is crazy, treating me like a cancer patient, and I think is trying to kill me. I am therefore - with the strong blessing of my husband and parents - canceling and refusing the treatment. We understand this may delay the removal of the filter, but all of us agree that these treatment options are unacceptable.

Tomorrow I will once again try and try to reach the vascular surgeon. I need to know his plan. I'm hoping he truly does have a way around this whole Ohio mess and I can just have whatever I need done in Maryland.

So that is what is going on. Saturday was a horrible day; so much so that I almost went to the ER on several occasions. I don't think I have ever been so scared. The only reason I didn't go was because it was a Saturday and I figured it would be busy and I would have to sit around and wait forever. Plus, I was so bad I didn't even know how I would make it there. If I had woken up today in the same pain I was going to go in the morning, at least for some pain medication. As bad as the pain was before the surgery, this is even worse and scarier. The medicines I take provide little relief, and it's really terrifying. This Friday - which will hopefully happen - cannot come soon enough.

Today, for no particular reason, is a better day. I am still in a lot of pain, but my brain is able to tolerate it better. I'm still about a "9", but it's better than the "50+" I was yesterday on the pain scale range.

I'm finding it difficult to type any more at this point, so I'll end it here. Hopefully my next post will be giving the all-clear to go to Maryland have this filter removed.

Week 8 (Continued Part 2)

2009-02-05T09:25:00.002-05:00

My ortho case manager called this morning, and she finally connected with my vascular surgeon and explained the situation to him. He is going to call me directly today, but it sounds like he has an idea to somehow admit me and get the filter out without going through the typical approval process.

I can't wait to hear what he has to say. I'm all for creative solutions!

Week 8 (continued)

2009-02-04T16:02:00.002-05:00

In a very strange deja vu, I'm back where I was last November. Almost a week away from surgery, a low platelet count, being sent to a hematologist in the Cleveland Clinic system. I tried to get out of the system, and was sent back in today by my non-Cleveland Clinic doctor who "thought it would be best".

I have an appt this Friday with the hematologist that tortured me and acted like a loon when I last saw him. I'm not optimistic. I was hoping for a platelet transfusion but it sounds like, per my primary care, that the hematologist would rather do some IV treatment that would take several weeks to build my platelets. Obviously that would void my Feb. 13 date to remove the metal that is likely (at least I'm hoping) causing all of this.

I'm defeated today. This was not part of the plan. It's tough to be back where you started, go through it all again. Except it's a little worse because I'm still very limited on what I can take for medicines; nothing that helps with inflammation or the pain. I'm exhausted, and between the torturing pain, lack of sleep and having to work a full time schedule it is just too much. To add IV "treatments" to my schedule, and wanting to be there for Brad given everything going on with his mom...I don't know how I will physically and mentally survive if this is extended another month.

I hate to write such a "down" blog, but that's where I'm at today and that's the situation. I don't think anyone is reading this anymore, but for those who are and who tolerated my ramblings today, I appreciate it. I just needed to vent, and for me writing is the best way to do so. It has just not been a good day.

Week 8

2009-02-02T18:48:00.002-05:00

It's been long enough where I'm switching to weeks. This is week 8.

Currently I'm in bad shape. The pain I was experiencing in my hips, legs and feet has now also spread into my arms, hands and every finger. Horrible aching, pins/needles, numbness, etc. Medicine isn't helping and it's pretty overwhelming. It's actually worse than before the surgery, and never lets up.

I'm going into work almost every day now for at least five hour periods, but it's tough and I'm afraid will soon be made impossible if symptoms continue to worsen. I'm even struggling to type, hence my lack of posts lately or any computer-related correspondence/email. I'm trying to get the IVC filter removed sooner than the scheduled date of Feb. 13, and will hopefully know tomorrow whether that is possible.

Of course as I was writing this I got a call from the local hospital where I had blood work done today for the pre-op testing, and my platelet count is once again low - 25. Because I was through this before the previous surgery, I'm hoping this now doesn't delay the procedure beyond the 13th.

I'll end with good news - my back feels great, solid, not a single bad issue there. Now I just need to get the rest of my body feeling that way!

Days 37 thru 41

2009-01-24T10:57:00.003-05:00

Sorry for the lack of posts lately, but I've had a miserable week. I'm working FT hours, part of those in the office, and it's been really rough. The musculoskeletal pain I had before my surgery is back and worse than ever, and I'm really suffering. I hate taking things like pain medication, but believe at this point I need something a lot stronger than what I have to get me through the next few weeks until I can get the IVC filter removed.

Based on my research, the filter is placed in an area where the blood goes from the heart to the legs, which I'm hoping explains why my leg pain is worse than it's ever been. I'm really just beside myself, as the pain is nothing short of torture and nothing provides any relief at this point. If I could just sleep away the days between now and Feb. 13 I would, but unfortunately I have to find the strength somewhere to get through this obstacle and not completely lose my mind. :-)

On a positive note, I did see a new primary care physician yesterday. I have to have pre-admission testing done before the filter removal, which means I could go through the same roadblock I did before my surgery - a low platelet count. I'm going to have the blood work done on Monday, so that will hopefully give me time to raise the count if needed without having to push the procedure back. I liked the PCP, though I'm sure I overwhelmed her with my history and situation. The nursing staff was unbelievably friendly, which made up for the fact that the office was older and smelled a bit like a nursing home. Of course the true test will be how I'm treated if there are problems with my pre-admission testing and how its handled. I'm hoping for the best.

Besides the horrible leg pain, my back is doing better. At first I was finding it really hard to spend more than a couple of hours in my chair at work without the back pain increasing, but yesterday I didn't have any problems. The biggest issue is my right hip. While I thought that issue had been cleared up, the driving and sitting at work has aggravated it again. At least with that I can put ice on it or sit in the recliner and after awhile it goes away. If only there was something I could do with the leg pain that would be that easy of a cure!

Before I go, on a side note Brad's mom was transferred from a Des Moines hospital to a nursing home in Anita this past Monday, which is only seven miles from Adair - her home town. She is continuing the dialysis treatments and responding well. Brad's sister and family were there for a visit this past week, and now his brother and family are there for two weeks. Brad's mom indicated that she wants to continue the dialysis next week; at this point things are just being determined week by week.

Day 36

2009-01-19T19:56:00.002-05:00

Today I was to go into work for a part day but decided to stay at home and work instead. I was out of pain medication, and the pain was just too unbearable. I'm starting to get frustrated at this point, though I have to keep reminding myself that it's too early for that. I still need that filter removed, and until that happens I can't start coming to any conclusions.

I did finally get my medications yesterday afternoon, and it will take me a few doses to get back on track. My other big news is that I'm trying to get out of the of the Cleveland Clinic system, and think I found a local osteopathic/internal medicine physician who is with the other big giant around here - University Hospitals. I've heard wonderful things about them, and figured I would give them a try. I need pre-admission testing done before my filter removal, and could not bear to think about going back to my Cleveland Clinic primary care physician after what her and her team put me through in the past. I refuse to give them more money!

Tomorrow I'm planning on doing a part day at work, so I'm hopeful that will go well. I don't believe I should have snow to contend with this time, so hopefully my commute home won't mimic the one I had last Wednesday.

Days 32 - 35

2009-01-18T13:06:00.003-05:00

It's been a tough few days, hence my lack of writing. I've been having difficulties getting prescriptions refilled, one in particular that helps the most with the pain. While it was called in on Thursday, the pharmacy put a hold on it stating they needed additional information from the physician because they are out of state. The pharmacy of course says it called the surgeon's office and left a message, but unfortunately this seems to be a habit with them over the last several months - blaming someone else. So for the last several days I've been suffering as I have minimal pain medication left, and have been trying to stretch it out until Monday. The leg pain is the worst, and most of the time unbearable. I'll be glad when I have my medications in hand again. I hate taking the darn things, but the pain is too severe at this point to function without it.

This all comes at a bad time, as I'm trying to put in a full time-plus schedule with work from home, and it's draining. So I'm trying to muddle through as best I can, trying to accomplish as much as I can while ignoring the total discomfort I'm in...or at least attempting to ignore the pain, as I don't believe I've been too successful lately.

On the plus side, I'm now able to drive a car on my own, and have been getting out more. Last night we went to Lowes and Home Depot to walk around. I didn't feel like it, but it's good for my healing back to make sure I keep a certain level of activity. Regarding my back, the pain is very minimal and I'm still shocked at how much mobility I have considering I had a fusion. All of my issues surround my legs at this point, and my right arm as my carpal tunnel pain has also come back full force, likely due to all of the time I'm spending on my laptop.

This afternoon I'm working away on my laptop again while listening to movies play in the background. We have free HBO and Cinemax this weekend, and there's been some good stuff on I've been wanting to see. Currently watching "The Darjeeling Limited." I'm 15 minutes into it, and so far I'm not impressed; hopefully it gets better from here!

Day 31 - First Day Back to Work

2009-01-14T20:00:00.002-05:00

Today was a big step, as I physically went into to work for about six hours today. I woke up feeling great and was like a little kid at Christmas during my 40 minute drive in, as I was excited to be going back to work.

While the first few hours were fine, around "hour three" I started feeling soreness in my right hip and my low back. It hit me; I am not used to sitting in a normal chair for hours on end. Yes, I've sat in them for maybe an hour or so, but then after that I'm walking and then returning to my reclining chair or laying down. By "hour four" I knew that while my goal was to also come in Thursday, that I would be staying at home instead. I still have a bit more healing to do before I can handle the sitting component. I was still proud of myself for trying, and have no regrets. I really enjoyed being back, and know that it's only a matter of time before I'll be able to. In the meantime I was able to grab some paperwork to take home with me, and now I have a new workload in front of me to keep me busy.

The other downside about today was that we had snow. Another calculation I didn't factor in clearly. First, because I went to work late (1oam), I had to park on the roof of the parking garage, meaning my car was out in the elements. Oops. By the time I left around 4:15 I had to scrap snow off my car, but luckily the snow was light and there was no ice. If there had been, I might have had to call a co-worker for help. To add to my distress, I then spent 2-1/2 hours on the road getting home, putting my average speed at 18 mph (though it was really more like 1 mph for the majority of the trip).

So after spending over three hours in my car and over six hours at work, I'm sore but not broken. I'm guessing I'll be a little achy tomorrow. And while I probably should have picked Thursday to go in as there is no snow predicted, it is to be about zero degrees so at least I can stay inside. At this point I'm aiming for next Monday as my next part day at the office, so we'll see how it goes. In the meantime I have a lot of work I want to accomplish at home, and at least here I can usually find a comfortable spot even though I don't have the pleasant company of my co-workers surrounding me.

Days 28-30

2009-01-13T17:38:00.002-05:00

Sorry, it's been getting harder to do daily posts. Brad was in Iowa over an extended weekend, during which time I wasn't feeling the greatest so I wasn't on the computer much. By Sunday I did feel decent enough to go out to an early birthday dinner for my dad, which I handled pretty easily. I hadn't ridden in a car for awhile, and found that the bumps that at one time really irritated my back produced no pain or discomfort so that was a positive.

This week I'm working FT from home, but tomorrow (Wednesday) and Thursday I am going to try to go in to work from 10am to 3pm to see how things go. I have permission to wear my comfy sweat pants and sweaters for a few weeks since I'm still swollen from the surgery and quite frankly, I've worn business clothes before too soon after a surgery and it can cause a great deal of pain. I'm excited to be back in the office, able to talk with people, and have some sort of normalcy back. I'm to the point where I'm really getting bummed being around the house all of the time by myself.

While the surgical pain has really gone away these last few days, the musculoskeletal pain in my legs and arms is back. Yes, the same kind of pain I had before the surgery, which I was hoping the surgery would cure. I'm not panicking, and I don't want anyone else to either. I still have that nickel IVC filter in me, which I'll have for another month. I'm working with my surgeon's office to come up with a plan of attack medication-wise (as that's all they can do for now) that will help me deal with the pain better. Last night I had a three-hour attack that was just horrible, and so bad that I contemplated going to the ER until I realized there was nothing they could do for me. After all, what exactly would I be diagnosed with or "cured" by? I'm guessing the blood transfusion I had during the surgery, combined with the drugs and anesthesia helped make that pain go away short term, but now my body has adjusted - it's been four weeks - and I'm back to where I was before. Well, almost. I would say that my spine is the best it's been in years, and that's going back long before I had any of the other surgeries. My spine health is currently in the "success" category.

So that's what's going on with me. Daily updates are getting harder, but I'll definitely continue to post updates. I continue to thank you all for your supportive messages and prayers. I've been slowly writing everyone back...I'll get caught up one of these days!

Days 25, 26 & 27

2009-01-09T19:50:00.004-05:00

Sorry for the multi-day post. I've been putting in a lot of work hours on the computer at home, so that's really limited my free time. I'm basically now working full time...actually a lot more given all of the technical glitches I had to deal with this week. Brad left for Iowa on Thursday, which also adds just a little more responsibility on me regarding household stuff, so I just haven't had a chance to blog.

Nothing really new. My mom took me grocery shopping yesterday for about an hour. It felt great at first, and I found that initially I was able to walk at my old, normal pace. However, at the end we had to stand in a huge line and it about killed me, the leg pain was excruciating. I've been trying to cut back on pain medications a bit. The musculoskeletal pain I had before the surgery is also coming back, but not nearly as bad yet. I still have the IVC filter in me that's made of nickel, so I'm hoping that's what is still causing the pain. That has now been scheduled to be removed on Friday, February 13.

I have moments where I'm really good, and moments where I'm horrible. The last two nights I've actually had a normal night of sleep with no interruptions, so I'm happy about that. It's almost been four weeks since my surgery, and while with my other surgeries I was physically back at work by now, it's not ready to happen yet. I have to remind myself not to beat myself up about it. This was basically a two-surgery procedure, so of course it's going to take longer to heal. Besides, with the hours I'm putting in remotely at least I'm able (or at least trying) to stay on top of it all. I'm doing the best I can, while making sure at the same time I don't push it.

Brad should hopefully be coming home tomorrow, which I'm looking forward to. After spending almost four solid weeks with him, it's really lonely to all of a sudden not have him here at all. The weather should also be good for driving, which gives me great relief. This winter has been nothing but storm after storm!

Tomorrow should also be a nice day in Ohio (meaning no snow), so I'm planning on getting out again. My parents are picking me up for lunch, and then we're heading to Lowes to pick up a few things for our house. I'm looking forward to getting out, as the house is beginning to feel a bit like a prison! I hope everyone out there is doing well and staying warm.

Update: Brad's Mom

2009-01-08T09:10:00.003-05:00

Brad left at 6am this morning for Iowa to spend some time with his mom, who is still in a Des Moines hospital receiving dialysis treatments. Last night Brad sent out an email update to some of the family, and since I know there are many of his and my family members who did not receive the email, we thought we would post it here as well.

Just wanted to give you a quick update on mom. She is continuing to get dialysis almost daily, or at least it seems daily. They are getting her up and walking quite a bit. She said they have her walking down to the end of the hall, and to the elevators. Personally I think she is scoping out the layout so she can better plan her escape.

She does seem much less confused than she was last week. She still doesn’t know when she will be good enough to get out. We are keeping our fingers crossed though.

Mom wanted me to tell everyone that she is doing as good as she can, and she really appreciates all of the notes she has gotten from everyone.

Day Twenty-Four

2009-01-08T00:45:00.003-05:00

New development today - incision pain is finally starting to kick in. I've been lucky; for the most part that pain had been pretty minimal until today. But, for whatever reason, the numbness I had been feeling around both the front and back incisions is quickly going away and boy, am I sore. Oh who am I kidding - it really, really hurts.

It of course didn't help that I spent a huge part of my day in a chair with a laptop on my lap (pressing on the front incision) working. I had a huge software issue that was hindering me from doing some very important quarter-end financial work, so that tripled my work day. In fact, it's officially 12:45am on Thursday and I am just now calling it a day for my own sanity. If you recall from my previous blog entry, I started my work day around 7:15 am this morning. As much as I'd love to stay up and finish a particular set of reports I'm working on, it will just have to wait until tomorrow. I'm going to go lie down and see if I can actually get some sleep. I doubt it, but I'm going to try.

Day Twenty-Three

2009-01-07T07:12:00.000-05:00

I'm writing this a day late, but yesterday was just an odd day. I spent almost all of it on my computer working, with the exception of getting ready, making meals and making sure I got my exercises and walking in. By the time Brad got home and I had dinner in front of me I was so exhausted I could barely eat. I finally ended up on the couch and fell asleep in an instant, only to wake up around 11pm to take medications. While I struggled for about 20 minutes to get comfortable, I was then able to fall asleep again. 6:30am came and off went my alarm notifying me to get up, get ready and be on my computer working by 7:30. It's not that I have specific working hours, but that's usually when I start and it's more out of habit than anything.

I'm still feeling pretty tired, but as Brad correctly notified me, it's probably normal that I'm still exhausted considering I've hardly slept this past week. But as much as I would love to fall back asleep right now, I have work to get done. At least I'm lucky and can stay indoors, as the weather here is dark, cold, icy, and likely going to snow later.

Day Twenty-Two

2009-01-05T22:37:00.000-05:00

Made it through my first six-hour work day at home, and also my first day at home without Brad. Last night I slept a total of about two hours, and surprisingly only felt the need to sleep about 90 minutes in the afternoon. I don't know why I couldn't sleep; it wasn't pain related, I just wasn't tired enough to fall asleep. Instead I ended up emailing some people, doing some work and watching DVD #1 of "The Office", Season 5, which I got for Christmas. At least I was semi-productive.

The best part of my day was that my mom brought over an old recliner they had in the basement, which everyone forgot existed. While I love my couch for lying down, it was not a good "working" place to sit for any length of time, as it would really bother my hip. So my mom brought over the recliner, and with two strategically placed pillows it is now my new work chair. It is very comfortable, and really relieves my hip pain. I think I now have everything I need to get through the next couple of weeks at home.

Day Twenty-One

2009-01-04T22:37:00.000-05:00

Short post tonight. Had a rough night with lots of back/hip pain. Because my night sleep was so lousy, I slept in today until about 1pm. I then spent the entire afternoon and evening doing work related stuff, and now it's almost time to go to bed again!

Brad returns to work tomorrow, and it really hit me tonight. It was great spending almost four weeks with him, even under these circumstances. Who knows when we'll have that kind of time together again in our lifetime! He is my best friend and supporter, and I will miss having him here. And like I told him, it's not because I'm now 100% on my own taking care of myself during the day, because I can do that just fine!

This week I increase my work hours to about 6-7 hours a day - still at home - so I'm hoping I can handle it. My health still varies a lot from hour to hour, day to day. I guess we'll see!

Day Twenty

2009-01-03T23:12:00.001-05:00

Wow, it's amazing that 20 days have passed since my surgery. In some ways it seems longer, and in other ways shorter. Very hard to believe.

Today was our Suntken Christmas at the parents. I was fine initially when I woke up, but in the middle of getting ready I went through this spell where I felt lighted-headed and sick to my stomach. I've been getting this about every other day since I left the hospital, and it comes out of nowhere. I thought it might be related to my meds, but today there did not appear to be a correlation. Usually laying down or eating something like a piece of toast remedies the situation, and today was the same. It turns out my brother, who was driving up from Athens, Ohio this morning, also was ill so between the two of us we delayed the start of our Christmas from 10:30 to noon.

Despite my poor brother struggling with a bad sore throat, it was a wonderful day. Lots of stories, laughter, and it was just a great time; so great that we got home just a little before 11pm! My back muscles are sore - the La-Z-Boy chairs were not as comfortable as I predicted - but I managed. It has been so long since we've all been together for more than just a few hours, and with the stress of the surgery behind us I think everyone just felt like a huge weight had been lifted. Today was our day to celebrate and give thanks as a family, I think we accomplished that.

Day Nineteen

2009-01-02T18:00:00.000-05:00

Last night I had difficulty sleeping. I'm not sure why, I just found myself awake a lot; I couldn't get comfortable. I reduced my pain meds on Wednesday evening and I'm definitely noticing a difference -I'm not as tired/foggy all the time, but the pain is also more difficult to deal with. Around 6:30am this morinng I finally was able to close my eyes and sleep for about three uninterrupted hours.

I've spent this afternoon on the couch, struggling to rebuild my work computer remotely. Before I left our IT guy set it up so I could access my work computer through a program called LogMeIn. It worked great until I left the hospital...and found out that my work computer had a massive hard drive failure. I initially was in a panic that I had lost everything, especially my thousands of emails that I have archived, but I was smart. I had backed up my company computer files on my own the weekend before I left, including my email, so in reality I only lost a week of emails and a few documents.

While the IT guy got me a new hard drive and the software installed, today I have been remotely transferring over my files and reorganizing everything. This has taken longer than I thought it would. In between I've been working on work-related projects, so today is truly a work day for me. I've been making sure to get in my exercises and walking, but everything else is just work. It's a bit hard to focus as the pain is nagging, but I'm managing. Today I'm making an effort to ice my right hip as much as possible - 20 minutes on, 20 minutes off. Maybe that will make a difference.

Tomorrow we are having our "Christmas" with my parents, brother, grandma and her husband in the late morning/early afternoon. My parents are hosting, which is only ten minutes from our house. They have several comfy La-Z-Boy chairs that recline, so I'm thinking that will be pretty nice. I don't think it will be too draining on me, as I think everyone there will be trying to do whatever they can to make me comfortable. I'm just looking forward to being with family.

Day Eighteen

2009-01-01T20:31:00.001-05:00

Given that today is a national holiday, like most people we just took it easy. I had another night of good sleep, and managed to stay awake all day today except for a brief 10 minute nap in the afternoon. I was much more active today, helping with cooking, cleaning, unpacking, etc. Yes, I did this all without violating my six week "No BLT" restrictions - no Bending, Lifting or Twisting.

Though the pain levels continue to remain the same, I really felt the urge to get out of the house and to also see my parents, since I hadn't seen them since they were in Maryland. So for dinner we met them in Fairlawn at a restaurant called Pad Thai and had a nice dinner; it was really good to see them again.

I managed the car trip and the time at the restaurant just fine, absolutely no issues. However, Brad and I made a quick trip to Wal-Mart down the street afterwards, and that proved to be a bit much. I wanted to pick up a small "tv tray table" and to see if I could find something to rig up a foot stool for when I sit on the couch. There are always a few odd things you end up purchasing for surgical recouperation and comfort, and these are the items I wanted this time around. While we succeeded in finding what we needed, 30 minutes of walking around the store and being on my feet, after a day where I had already been quite active around the house, was pretty exhausting. I was glad when we were finally back home.

In regards to Brad's mom, she is continuing blood transfusions and dialysis. There is still no known date for when she'll be released from the hospital. Today Brad got to speak with her, for the first time in a few days; it's been hard to connect with her in between treatments, tests and her trying to get sleep. His mom sounds tired but better than she has in previous days, and while she has suffered from some confusion recently, her mind was clear enough where she was able to recite Brad's cell number from memory. She is one smart lady with a sharp mind.

Day Seventeen

2008-12-31T21:25:00.000-05:00

Today I basically did nothing but sleep. Did some work, did my exercises and made sure I got my walking in around the house, but mostly just slept. I think I was drained from Monday and Tuesday, plus I really have not slept for any more than 20-30 minutes at any time for over three weeks. And I'm sorry, but small naps just aren't the same as normal sleeping patterns! What was great today was that I was able to sleep for hours without waking up, so that's a plus. I actually slept for six hours straight last night - what a victory!

It's not a fun way to spend New Year's Eve - and it's even more pathetic that people need to keep reminding me that it's New Year's Eve! But it really doesn't bother me.

In terms of pain, it's pretty much the same except my knee and ankle joints are really killing me today. I can't take any anti-inflammatory medication, so I just have to live with it. I feel like today was a pretty useless day, but am hopeful tomorrow will be better.

I know 2008 was rough for a lot of people, so here's hoping 2009 brings everyone some much needed good health, happiness, laughter and good memories.

Day Sixteen - We're Home!

2008-12-30T21:27:00.001-05:00

Brad and I woke up early this morning (3am for me, 6am for Brad), got some work-related stuff done, packed up the car and were driving out of the hotel parking lot by 10:15am. That was a good time considering I had a really bad afternoon yesterday and had an even more difficult evening, which prevented us from doing much pre-packing on Monday.

Instead of a lot of short stops during the ride, we did three longer stops along the 380 mile trip. With a pillow behind my back I found myself quite comfortable, with the exception of front incision and right hip irritation/pain. The weather was sunny and perfect, and we managed to make it home around 7pm.

Brad and I have never been away from home before this long; in fact, the longest was a ten day vacation we took back in 2000 when we lived in Minnesota. Pulling into the garage, walking in through the door and seeing our beautiful home was like being in heaven. Brad unpacked the car, I got supper ready (thanks to my mom, who had dropped off a home-cooked meal that just needed to be reheated), and then we sat down and had dinner at our home. It was wonderful.

The ultimate part for me is our couch. I love our couch; it has nursed me through hundreds of bad pain days. I've had this couch in my mind the whole time I was in Baltimore, and I must say it did not disappoint. The moment I sat down I knew my road to recovery was going to be that much easier. It's like sitting on a cloud, absorbing every ounce of pain I have and removing it from my body. I could not be more content right now.

There is truly no better place than home.

On a separate note, still nothing new to report on Brad's mom. She is still in the hospital; Brad will be talking to the nurses tonight to find out anything new from today. It's always tough talking with nurses on the phone, as the patients are first priority so most conversations are 30-60 seconds before they have to run off and tend to someone. I'm hoping he can get some much needed answers tonight.

Day 15 - Part 2

2008-12-29T21:30:00.000-05:00

Brad wanted me to pass on his sincere thanks for all of the messages and prayers regarding his mom. She was transferred to Des Moines and has received a blood transfusion; she'll likely be in the hospital for a few days. There are still lots of tests being done, so there are still a lot of unknowns.

I received clearance to go home tomorrow. I didn't have a great afternoon, but hopefully Brad and I can get some much needed sleep tonight before the trip. The goal is to hit the road no later than 10am, and hopefully be back in Cleveland in the early evening. I know the car ride will be rough, but I just want to get it over with.

Hopefully the next time I blog I'll be doing it from Ohio!

Day 15 - Part 1

2008-12-29T10:39:00.000-05:00

First, Brad's mom was transferred to a Des Moines hospital last night for tests and potential treatments. Brad is having a hard time getting answers from anyone at the hospital, so there is still a lot of waiting and we're still not sure what is going on. I think it's a given that he will be heading for Iowa, but he's struggling with when that should exactly happen. The situation with me complicates things, but I keep trying to tell him to leave me out of the equation. We'll do whatever we need to for things to happen. I would go to the end of the earth and back for him, to help him in whatever way I can for him and his mom. I could care less about my own situation at the moment.

In regards to me, I got clearance from the home health nurse this morning. I'm meeting with the case manager at 12:30 at the hospital to wrap things up so we can head home. They believe the main cause of my pain is from bursitis, specifically in my right hip. If one of the fellow's is still around, they may give me an injection for the pain while I'm there.

I'll write more later, as hopefully we'll know more about Brad's mom soon.

Need Prayers

2008-12-28T21:42:00.001-05:00

Though we are still trying to find out information, we just found out that Brad's mom is being taken to a local hospital at this moment. While she is awake and talking to Brad on his cell at this time, her health is such that we are very concerned. We are hoping that it is just a result of recent anemia she has been dealing with, and nothing more. Please keep Brad's wonderful mom Carolyn and the Fairfield family in your prayers at this time.

Day Fourteen

2008-12-28T20:57:00.000-05:00

Today the pain got the best of me. Had a lot of trouble sleeping, and even more trouble getting comfortable today. I didn't really sleep at all during the day either, so I'm hoping to go to bed after I'm done with this and hopefully get a few hours of sleep in.

It was a very unproductive day, which is frustrating. My mind wants to do things, but the pain makes it difficult to focus. The biggest thing I did today was update my "story" on an online message board/information center regarding artificial discs. People who have had the procedure or who are looking to have it done usually find themselves there; I've been a member since February 2005. There are a lot of active discussions, and people are encouraged to share information so others may find benefit from it. Given the rarity of my situation, I have been doing my best to keep people up-to-date on my story. If even one person out there is suffering from similar symptoms, maybe my story/path can help them find a solution to their problem. I had not updated my status since before the surgery, so I had a lot to share.

The reaction on the message board has been amazement and shock, as no one realized that an implant reaction was possible. I found this interesting, since it is listed on all artificial disc literature as a potential danger. Even I knew that going in, and asked my surgeon about it. The surgeon blew it off, stating it was just a legal thing and there was no such thing as an implant allergy. I put my trust in the surgeon and dropped the subject, though obviously regret it now. Though there are people on these message boards who have success stories, there are more failures than anything. It reminds you that you are not alone, but also makes me angry that so many of us were mislead down this artificial disc replacement path when information is now coming out that trial results were falsified and other information was withheld. It pains me to know how many other people are suffering out there, and I hope that once things heal I can use what I've been through for some sort of good/purpose.

Tomorrow I meet with my home health nurse and also my case manager so I can be discharged. I can't believe that in less than 48 hours I should be back at my comfortable home; I can't wait!

Day Thirteen

2008-12-27T19:23:00.000-05:00

If you believe in unlucky 13, then I guess it makes sense that today - day thirteen - was not a great day. I still don't know if the meds I'm taking are right; I don't want more, I just want something more effective. I went through a horrible pain spell last night and most of this morning, and nothing I did made things better. It's still focused around my hip/groin/leg area. It's been less than two weeks since the surgery, so this is expected for the short term. It's something I'll talk with the case manager about on Monday when I see her.

Brad spent most of the day with his relatives who live in the area, so I was on my own today. There was no way I could do a 40 minute car trip and back, plus sit in a house for several hours that was unlikely set up for a recent back surgery patient! I made it on my own here just fine, though it was definitely boring and lonely. I started writing some people back (I have a huge list of people to get back to), but would fall asleep in the middle of writing something. A typical day - can't sleep well at night, so then you start falling asleep in the middle of various activities throughout the day! I feel like a 90 year old about now. :-)

Tomorrow I'm hoping I'll have a bit more pain relief, as I'd like to get some job-related work done. My parents also bought me "The Office DVD Board Game" as something to keep me entertained after my surgery, so Brad and I will break that out tomorrow and try it out. We're both big fans, but I've seen the episodes a lot more. On the other hand, he's not on medications and has a better memory. It will be interesting to see who wins!

Day Twelve

2008-12-26T10:34:00.000-05:00

I wanted to say that the staples were officially removed this morning. 36 in my back, 25 in my front. It all went really well, and I was thankful I didn't have to wait until Monday to get them removed. The nurse thought the ones in my back wouldn't have lasted that long, as they were already really irritating my skin at this point.

I have one more home health visit on Monday to go through the official discharge paperwork, and I'll meet with my case manager at the hospital sometime on Monday as well. Until then my plan is to continue to improve yet take it easy; I really want to make sure I'm in prime condition for our trip back home next week, which we're hoping to do in just one day. I'm really, really ready to be back home - we both are!

Day Eleven

2008-12-25T22:19:00.000-05:00

Merry Christmas to those who celebrate it. I hope everyone had safe travels and were able to spend time with their families, as much of the country seems to be struggling with cold, snow and ice.

Brad and I just hung out at the hotel today. We had saved all of our Christmas cards, so we had those to open throughout the day. For the first time I assisted in making lunch and also our Christmas dinner. I'm still having that nagging pain in my right hip and groin muscles, but the medicine is helping and time will eventually take care of it. Tomorrow morning at 8am I'm having my staples removed, which I'm thrilled yet a bit apprehensive about. They are really starting to irritate my skin, so I'll be glad when they are gone.

All in all it was another good day. I think tomorrow is the point for both Brad and I where we can really start getting things together for our trip back home. As of tonight, only four more full days here and then we're hitting the road back home!

Day Ten (Carrie)

2008-12-24T15:03:00.000-05:00

Not much news to report today. I think the new medication levels are a bit too much at this point, as I've found myself sleeping most of today. I've been really struggling to stay awake. Since the pain is better I'm going to start lowering the doses a bit, plus making more of an effort to make sure I eat more. My appetite these last few days hasn't been much, but I should probably be eating more than I have.

On an unrelated note, I want to wish my Iowa relatives a Merry Christmas Eve. It's tradition in our family to always gather at my grandparent's Iowa farmhouse on Christmas Eve, and it's weird not being there with them today. Our thoughts are with them, and we hope they all had safe travels. I'm also thinking today about my Grandpa Grimm who passed away three years ago; this was his favorite holiday; not just because of the ham sandwiches, but because he was all about family. He was one of my heroes, and I think about him all the time. He gives me inspiration to get through each day, so I think it's fitting to mention him today, on his favorite holiday.

Day Nine (Carrie)

2008-12-23T17:15:00.000-05:00

It's amazing what a day or two a difference can make. I've said with the last two surgeries that there is usually a pattern; two days of no change/or feeling like you've gone backwards a bit, and then on day three you find yourself leaping ahead. This surgery appears to be no different.

Yesterday I suffered from pain all day, struggling to get comfortable and trying to sleep when I could. By evening I had my medications slightly increased/tweaked to combat this pain wave I was having such a difficult time getting over.

Today, being a day "three", brought a huge leap of progress with it. First, I was able to sleep in bed for almost six hours last night. Amazing! I woke up several times, and at a few points had to struggle to find one spot that brought me some pain relief, but in the end I was successful. I was even able to get to sleep after a midnight cell message from my brother telling me the Bears won in overtime (go Bears!).

I woke up at 3am and decided to make my way into the living room and into my chair. For the first time, I was able to position the foot stool and chair on my own without any help, got settled in, turned on the tv for noise and managed to sleep another three hours. What a great start to the day!

When Brad got up I was able to get out of the chair and get myself breakfast. I then spent the rest of the morning getting some work done, doing some light cleaning (without bending, twisting or lifting), and getting some good exercise being on my feet, without my walker. Also, another first.

I got ready and had my home health appointment, which went by quickly. Things look great, and confirmed that they will now be taking out the staples on Friday as my contact is not working on Christmas. They recommended this antibiotic cream with a pain reliever in it that I was told to put on an hour before they arrive on Friday, which should make the process easier for me. I'm told it's not painful, so I'll trust them. Even if it is, what choice do I have?

We had a quick lunch and then my physical therapy guy arrived. When he knocked at the door he indicated he was housekeeping (just kidding around), so when Brad opened the door I was standing, no walker, and after a moment he said "Are you actually the one who had surgery?" I told him yes, that I was able to walk around the hotel room without the walker, at least today. He was pretty amazed. He asked me if I was up for taking a walk without the walker, and I agreed. We then walked the whole length of the floor and back (it's actually a very long hallway with lots of little adjoining buildings), and then I climbed up and down a flight of stairs and then walked back to the hotel room. The guy was stunned and basically indicated that I had "passed"...no further need for physical therapy visits at this point. In what must have been the shortest PT visit ever, he was gone in less than 10 minutes.

Based on history I know the next couple of days will be stable or a downturn, but today has been quite amazing. I am just floored by how good I feek today. The pain medicine is doing it's job keeping the non-spine pain issues down, so I'm just feeling great. Today is a good day. And, I think that after only 8 days after surgery I am officially done with my walker - success!

Day Eight (from Carrie)

2008-12-22T10:32:00.001-05:00

Yesterday afternoon, evening and this morning has been a major downturn for me. The pain levels are out of control, and I've only been able to sleep in spurts in the arm chair.

I spoke with my case manager nurse, and it appears that all of this is "normal." It doesn't happen to everyone the same, or every time, but in my case it appears that two surgical procedures are now taking their toll. The worst of the pain is on my right side, from my hip/groin and down my leg. I guess this is not unusual based on what they had to do to me during surgery. I've been told to start taking the valium on a regular basis for the next few days, and they are going to determine whether my pain meds need to be changed or increased temporarily as they are currently providing me with no relief. There's also some question as to whether the IVC filter they put in about 10 days ago - which is made of nickel, the metal I'm allergic to - is possibly causing some additional pain as it's in my bloodstream and won't be removed for another few weeks.

Besides the huge pain issue I'm still very mobile and able to get around well. The pain is just so overwhelming at this point that it's tough to do anything else. I had wanted to get to emailing people and doing some work today, but now I'm not sure that is going to happen. I can barely type this blog I'm so groggy and uncomfortable.

A home health nurse came by yesterday for her first visit; typical stuff. The good part was that they do work on Christmas day, so they are going to schedule a time for someone to come out and remove the staples that morning. That will be a wonderful Christmas present! We still have to stick around until the 29th to see the case manager, and then will start heading home on December 30. Turns out if we stay until the 30th we get a much better hotel rate per night and save money, so we'll stay the extra night. This will mean we should be back home no later than January 1, 2009.

That's all for now.

Day Seven

2008-12-21T09:07:00.000-05:00

Good morning, everyone, today I (Carrie) decided to do the blog. Brad is in an unusual spot this morning - a local Baltimore tv station newsroom. In fact, about 30 minutes ago I saw him walking in the background with a security guard, behind the newsroom desk. It turns out one of his college classmates from Northwest Missouri is the Sunday morning news anchor on the local NBC affiliate, so she invited him to stop by, watch the broadcast live, and then they'll probably head out for coffee afterwards. He was really excited, so I'm glad that he's there and hope he's enjoying himself. My mom leaves this afternoon for Cleveland, so it's really the last break away from me that he gets before we return to Ohio!

I'm still hanging in there, recovering a bit more every day. My biggest challenge against me has been the hotel room and the furniture, none of it which is really comfortable. The bed is the worst; I've nicknamed it the body buster. It somehow finds a way to penetrate every part of your body that hits that bed and inject it with torturous pain. You lie there feeling horrible, and when you get up you feel like you've just been severely beaten. It goes without saying that I feel it's working a bit against me at the moment. The only other piece of furniture I've been using is an arm chair, rigged with several pillows and a ottoman that the hotel loaned us. This is the most comfortable place to be, but sometimes even this just does not do the trick. I do get up and walk around a lot, but am getting frustrated that I don't have one truly comfy place to go that soothes my aching body. At home I have a couple of great places to be, especially our living room couch, so I am counting down the days where I can be home again. With my mom leaving today I might try out the couch here at the hotel, but just based on looks alone I'm not hopeful.

Overall I'm doing quite well. I'm having a lot of incision pain, and a lot of pain in my right leg. It's a different leg pain than I had before the surgery, as the pain is only on the outside of the leg and not the entire leg, plus I no longer have pain in my foot. My left side feels great - no pain at all - so I've been taking advantage of that. Yesterday I was able to take a real shower for the first time, which was wonderful. Was able to easily get ready on my own, which is a big deal. I'm still taking the Vicadin pretty frequently for the pain levels, and occasionally take a Valium for muscle pains/cramps. I'm slowly starting to eat normal food, though my portions are still small and I'm very picky; it really depends on what few things sound good to eat at that moment.

The last two days I have found I'm running fevers around 100 degrees that usually start around 2pm, but find if I take two Tylenol and sleep for an hour it goes away. I'm thinking I need to break up my days a little more, at least for now. Take more short naps throughout a 24 hour period instead of trying to sleep through the night. It's something I'll probably start to try today or tomorrow just to see if I notice a difference.

In terms of my brain, I think it's functioning pretty well. Played online Scrabble with mom yesterday and actually won...though she's always a tough component! On Monday I am going to start working approx. 2 hours a day, which I think I'm ready for. I won't have a set schedule, but I'm looking forward to dipping my toe back into the work-mode pool. I have amazing staff so I'm not worried about anything, but obviously have my own projects I want to work on during this typical "slower" time in the office. I also have three new books to read that I got as gifts before I got here, so I'm going to start reading those; I feel I'm ready, like my brain can start to absorb things again!

Also, while I'm thinking of it, a few people have asked and yes, I did have to have a blood and platelet transfusion. Unfortunate, but expected. The surgeon told me the amount on Tuesday morning, but have since forgotten. I remember one of the numbers was "3500 ml", but forget what it was in reference too.

That's really all for today. It's a long post, but it catches everyone up. I'm floored at how many people are reading this thing! Today the major thing will be my mom leaving, and though I will miss her I'm glad she's able to head back. I don't think I'll be too much of a burden on Brad alone at this point, though maybe you need to ask him that in a few days! I think it's a little hard for my mom to leave, but she knows we'll be back home soon...less than two weeks! It has been so wonderful to have her here. The woman is the first one to jump up and do anything you need, get you anything you need...she has so much energy! She's also a good out-of-box thinker, so she's good at coming up with solutions to any challenges we've faced along the recovery route. And of course the love and support she provides is invaluable; she is my mom! And now that I'm getting a little teary-eyed, I think I'll end the blog for now. And hey, now Brad's sitting in the "newsroom" behind the anchor desk, so I'm seeing a lot him now. Looking good, Brad - you were ready for your close-up!

To everyone out there, I hope you had a great weekend and managed to survive all the snow and cold that has been hitting most of the country (though surprisingly not in Baltimore)!

Day Six

2008-12-20T23:12:00.000-05:00

Carrie seems to get better every day, which is good. She still seems to have a hard time getting comfortable. She says the staples they used to close the incision really bother her. Of course they would me too. I try to tell her that I understand, but we both know that I don't. After all I've never had two incisions, one each in the front and back, closed with staples. I don't even want to count how many there are.

Sorry, this is starting to be a post more about me, than her. Anyway, Carrie is doing better. I hope all is well on your end so far this holiday season.

Brad

Day Five

2008-12-19T22:18:00.000-05:00

Just a short note today.

Carrie was discharged from the Hospital today. She has been resting in the hotel room since she got back. The hard part is trying to find what is comfortable. I'm sure that will be the same when we get back home. She is doing very well, considering what she has been through.

I would like to extend my personal gratitude to those who have been caring for Carrie for the past five days, the doctors and staff at St Joseph's Medical Center in Towson MD. The care she received was much better than she had received in her last surgery at The Cleveland Clinic. We really felt like the staff at St Joseph's really cared about how she was doing, and that it was more than just a paycheck to them.

I'm sure Carrie will be back to posting regularly soon.

Brad

Day Four

2008-12-18T16:57:00.000-05:00

Hi everyone, it’s Carrie. Brad was kind enough to lend me his computer here at the hospital, so I thought I would do a blog update.

First of all, regarding the surgery - per my surgeon, it went better than expected. The surgery took about 4 hours, which was an hour less than projected. They went in through the front, took out the artificial disc, put in a spacer and a few screws. They then went in the back, took out the screws/rods from surgery #2 and put in several new rods and screws. They were able to “clean the area up”, meaning removal of things such as bone spurs. The surgeon said it was much easier than they expected, and that he was really pleased with the way things turned out. Though initially they thought they may need to go and stabilize the L4 level, by the time they fused L5/S1 they felt that L4 looked good and didn’t need to do any work at that level.

Tuesday and Wednesday were very rough days. Tuesday my only task for the day was to sit in a chair for 20 minutes; I ended up being in it for three hours. Wednesday was a big day – they removed most of the tubes, plus I had two sessions with occupational therapy (OT) and physical therapy (PT). I spent most of the day in my chair, though during the daytime hours I found it hard to stay awake when I had a few minutes to myself. The pain was pretty bad both days, which was expected.

Today has been my best day. I got to have liquids for breakfast and lunch. Breakfast was wonderful; apple juice and jello. Sounds simple, but it tasted like liquid gold. Lunch was pretty dreadful – beef broth, grape juice and orange ice. Even just writing it makes me queasy! Luckily I have now been given permission to have a “regular” meal for dinner, so I’m looking forward to that. I went to PT/OT twice today and passed with flying colors. I’m able to walk up and down the hallways with no assistance, and can handle steps and other day-to-day things that you don’t think about until you have surgery! The only negative today was that the IV in my right hand swelled too much and they had to take it out and put it in my left arm. Both arms are bruised and battered, so I was glad they were able to find a spot for the new IV.

Unless something unexpected happens tonight, I will be discharged tomorrow. I’m looking forward to being back at the hotel, with my familiar surroundings and comforts I brought from home. The one thing I will miss is that the hospital does have better tv channels, but at least I have my DVDs at the hotel!

I’ve said it before and I’ll say it again, I am so unbelievably grateful for everyone’s support. The encouragement and prayers I’ve received mean so much to not just me, but my family. It truly helps me get through each day. You are all in my prayers and thoughts as well.

Day Three

2008-12-17T18:04:00.000-05:00

Well, day three only has six hours left. Carrie continues to improve. She sat up in the recliner today for several hours. Also had two Physical Therapy sessions, where they made her get out of a chair and walk three times. She is pretty pooped, but not as much as yesterday. And they are getting ready to remove the suction tube that goes down into her stomach. Sorry, but it kind of makes me cringe.

In short though she is continuing to improve. Keep your fingers crossed.

Brad

Day Two

2008-12-16T21:59:00.000-05:00

Carrie had a pretty good day. She was in good shape when we saw her this morning. They did get her up for the first time since the surgery, and had her sit in a chair. It was supposed to be for at least 20-30 minutes, but she fell asleep in the chair, and she was in it for nearly 3 hrs. That took a lot out of her, and of course, getting out of bed for the first time is always a significant act, and causes a lot of pain (just the way it is). She was pretty much out of it for the rest of the afternoon, and early evening.

Day three will be interesting as well. The physical therapy people came in, and said she would have two sessions tomorrow. Plus they have a couple of minor things being done (removing this and that). I imagine she will be pretty pooped tomorrow as well.

Over all though I think she is doing pretty well

Brad

Hi from Carrie

2008-12-15T19:50:00.000-05:00

This is Carrie. About an hour ago I made it to my nice, private room. First time for a private room - I lucked out! Pain is intense, but they are doing a good job keeping it under control. I'm looking forward to talking to the surgeon tomorrow, as I still don't know exactly what they did.

I'm pretty tired, so I'm off. I just thought I would say hi and that I survived! And another good thing...my care here has been EXCELLENT.

Surgery is done, all seems OK.

2008-12-15T15:30:00.000-05:00

Just want to let everyone know that Carrie is out of surgery, and we have seen her. It took an hour and 15 minutes less than what it was scheduled for. She seems to be doing OK. I haven’t seen any of the surgeons yet, other than passing in the hall, so I can’t say everything went well. But I am assuming that since no-one was too eager to come find us, there were no major problems.

They went in through the front to remove the old artificial disk, and do the majority of the fusion. They then flipped her over to remove the screws from a previous surgery, put new ones in, along with a rod to stabilize the area. If you would have combined the two, you probably could have seen daylight through her. She was in quite a bit of pain when she came into the recovery unit (for some reason). They seem to have a handle on that though.

I’m keeping my fingers crossed that things continue to go well.

Brad

What to Expect

2008-12-14T22:15:00.000-05:00

I know there will be many of you checking the site for details on Monday, making sure I made it through ok with few/no complications. While I'm sure everything will be ok - I am in good hands - I thought I would at least let everyone know what to expect.

My surgery will begin around 7:30am. The first part of the surgery, where they go in through the front, take out the artificial disc and fuse, will take about 3 hours. The second part of the surgery consists of them going in through the back, taking out the screws/rods put in during surgery #2, replacing them at L5, and then probably adding some hardware at L4 as they believe that area has become unstable and needs the support. The second part is anticipated to take two hours.

So in total, I'm looking at a minimum of five hours in the operating room, and it could easily be longer. Brad will try to post an "all clear" message to this blog from his phone, but it could technically be evening hours before he can do an actual, real post.

I will likely be in the hospital until at least Thursday or Friday, and will definitely be kept in the Baltimore area until at least Dec. 29. before I'm cleared to go home.

As this will be my last blog before the surgery, I just have to say this. I am so grateful and lucky to have such wonderful family, friends and co-workers. I've often said that while I've been unlucky with health, I've certainly been nothing but lucky when it comes to the people in my life. I want to thank each and every one of you for your prayers and support, especially these past few years. It's been a long, rough road, and I couldn't have gotten through it without the people around me.

And of course I could not go without saying thank you to those closest to me - my parents, brother, and especially Brad. They have gone on this journey with me, every step of the way, and I'm so glad they will be with me tomorrow. My disappointments and frustrations have been theirs as well, and I know they will be very happy when all of this is over and a positive end result is achieved.

I look forward to talking with you all soon, whether it be by email, mail or phone. I will certainly be thinking of all of you all from my hospital bed!

First, a Little Fun

2008-12-14T21:01:00.000-05:00

Today in an effort to forget my impending "doom", Brad and I went on a little trip. We officially hit Delaware and New Jersey for the first time, and spent a few wonderful hours in Philadelphia. Though we did absolutely no research ahead of time, we managed to easily find our way to downtown Philly and Independence Hall. We saw the Liberty Bell, toured the Hall, and then walked several blocks downtown until we found an open restaurant, Jones. It was a great day, until I saw the Welcome to Maryland sign...now it's back to business!

Almost There

2008-12-13T15:07:00.000-05:00

I've been working to get to this point for years, and finally it's just around the corner. We met with my case manager on Friday, so I now know every little thing to expect from start to finish. The Cleveland Clinic once tried to ruin things by refusing to release my pre-op records to the surgeon. It was quite hilarious, as they first tried to tell me they had no record of any pre-op work being done. What a joke, since that's what lead to my first scheduled surgery date being canceled! I finally got things worked out and in the appropriate hands; just one more reason I will not be stepping foot into a Cleveland Clinic establishment ever again.

This morning I had my final bloodwork done, and now all there is to do is enjoy the final few hours of freedom. Tonight Brad and I are going to his relatives for dinner, which is always guaranteed to be a good time. Tomorrow we're still not sure what we're going to do - we can go to D.C., or take a drive through Delaware and New Jersey to Philadelphia. The second option would allow us to add two more "states we've been in" to our list, plus Philly - a city we have not been in before - is only 90 minutes away. Then again, I love D.C. Maybe a visit to the Lincoln Memorial is just what I need before I face Monday.

Round 1

2008-12-11T11:36:00.000-05:00

I made it through the first round yesterday - the IVC filter. It was a very simple, quick procedure; I spent only 25-30 minutes in total in the procedure room. Every single person we encountered at the hospital was extremely friendly and they all seemed to genuinely enjoy their jobs and the patients. It was a far cry from the care I've been receiving in Cleveland these last few years. I feel like I'm in good hands.

Thanks to my dad genes, I've inherited this "quirk" where if I haven't eaten anything by around 1pm I get a migraine, and yesterday was no exception. The procedure was scheduled for 1:30, but by the time I didn't get in the room until after 3pm. By the time I had anything to eat it was around 4pm, but the damage was done. We left the hospital at 6pm, I had some soup for dinner and then crashed for the evening. I'm still dealing with a slight headache this morning, but am otherwise feeling my usual brand of "normal".

The ironic part about all of this is that we found out the filter they put in is made of nickel. Yes, the very same thing I'm allergic to. This means I'll have to go in a month from now and have it removed. It's small enough where it shouldn't do too much damage, but it's obviously something I don't want to leave in for the long term.

Nothing much is on the agenda for day. I have some work to do, and we might make a quick trip to the IKEA store down the street to pick up a few things to cook with here at the hotel.

It Begins

2008-12-10T08:41:00.000-05:00

What seemed impossible a few weeks ago has now transformed into reality. Brad and I made it to Baltimore late last night and settled into the Residence Inn we will be calling home for the next few weeks. It's not the ideal place for me to be recovering in - after all, nothing can beat the comforts and familiarity of one's own home - but it will do.

Today I go in for the IVC filter, which is to take place at 1:30. The medical professionals I spoke to made it sound pretty bad, so I had avoided reading anything about it until this morning. From what I've seen it's nothing compared to other stuff I've been put through in my life, so I'm not concerned. I'm looking forward to seeing more of the hospital today so I can get a better feel for what I'll be experiencing next week.

Moving Forward

2008-12-05T13:03:00.001-05:00

Despite the setbacks of the last couple of weeks, I am officially a "go" for the December 15 surgery. My health has improved dramatically over the last couple of days, and I'm ready to go.

Another Road Block

2008-12-04T08:41:00.000-05:00

It turns out I had a right to be concerned about the high dose of steroids I was put on over Thanksgiving. I'm now suffering from an infection caused by the steroids, and I'm in pretty bad shape. If I don't notice a large difference between today and tomorrow, I will have to cancel the surgery on the 15th. I know it sounds like I should have more time, but I also have the vascular procedure that was to happen on the 10th, and in my condition it could never happen.

I know that what's meant to happen will happen, so if the surgery is canceled so be it. There is nothing I can do at this point.

A New Date

2008-12-01T21:07:00.000-05:00

It appears - at least for now - that the planets are aligned and I will be having back surgery on Monday, December 15. It's not my first choice for a date, but it should work out ok.

On another positive note, the steroids raised my platelet count to 373. Unfortunately the side effects that came with that drastic change are still making me miserable. I'm actually looking forward to the point where I'll be hooked up to an IV!

Getting Closer

2008-11-29T08:03:00.001-05:00

I had two appointments with a hematologist this past week. After running a myriad of tests, the doc has come to the conclusion that my low platelet count is likely due to the implant reaction. In fact, the only things that showed up as something to be concerned about support the implant reaction theory and are not consistent with anything else. He agreed with me that as long as I had the artificial disc in my platelets would be low, so it would make no sense to further postpone the surgery since the surgery is likely what I need to correct the issue. This being said, he is giving his approval for me to move forward with the surgery, with the suggestion that they have platelets on hand for a transfusion during the procedure.

The one slightly sticky point is that my platelet count tanked even more this past week. It was at 21, and as of Wednesday I was at 13. The 13 is unbelievably low, so I'm now on a heavy dosage of steroids to bring the count up. I'm taking 10 of these things a day for four days, and then will go into the doc on Monday to see what the platelet count is. I'm guessing that if it does help bring up the count, he may recommend I take them leading up to the surgery to keep the count higher. Though the count is very low (should normally be at least 150), the good news is that the platelets I do have seem to be very healthy, as I'm not exhibiting issues that most people with that low a count would be having.

On Monday I will be working with my Baltimore surgeon's office to reschedule the surgery, which I'm hoping can still be done in December.

Surgery Canceled

2008-11-19T08:52:00.000-05:00

My surgery has been canceled due to a low platelet count. It will mean a delay of a few weeks until they can get it back up again. A big, sincere thank you to all who have sent me your prayers and well wishes.