Monthly Archives: December, 2011

2011 In Review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 4,700 times in 2011. If it were a NYC subway train, it would take about 4 trips to carry that many people.

Click here to see the complete report.

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2011 Health Review

As 2011 comes to a close, I had my final office visit for the year on December 27, so let’s review how things have gone through the year in addition to latest health status.

I made a lot of progress the first three months of year: my hair fully grew back, my blood counts kept improving to almost normal levels, and I was down to just a couple daily drugs. I went back to work full time in February and, to use a sports analogy, I would say I was about 90% back to normal health.

Then the dreaded Graft-versus-host disease (GVHD) of liver started. It came on quietly, I didn’t notice any changes myself (a common theme throughout the year). It was discovered from the monthly CBC blood counts. So the first treatment was putting me on some powerful steroid drugs (prednisone). By April, the medication had caused my blood sugar to skyrocket, to the point where at my visit to get a routine bone marrow biopsy, I had to be admitted to hospital until my blood sugar was brought under control. After that, I was diagnosed with “Steroid-Induced” Diabetes and had to start monitoring my blood sugar multiple times a day and take insulin.

After 5 days in hospital, things were slightly off for most of the year. I would go through periods where my sense of taste was off, fatigue became a big problem, and there were periods of leg swelling and bloating from the medications. Things just muddled along health wise from April to November, as I had my ups and downs. Back to the sports analogy, I would say I hovered between 70-80% of normal health.

In spite of that, we were able to make two car trips to health conferences in Cleveland and Atlanta. I was able to continue bike riding, although not at the level I use to do. I even did the full Moonlight Ramble, about 25 miles. Just keeping things clean and watching my surroundings was the theme for this year.

As we came to November, I had my first “cold” since the transplant. This was the typical running nose, sore throat, just general feeling of blah. I was really run down and some things that had gone away came back with a vengeance like leg swelling and sense of taste being off. I was not eating as much, nor drinking enough fluids as it turned out. All this built up until in my normal November office visit they found extremely high levels of creatinine in my kidneys. The drugs I had been taking are toxic to kidneys and since I was not getting enough fluids, they were building up to dangerous levels. So admitted back to hospital for a few days where they pumped me with IV fluids.

Since being released, I have felt much better. My blood sugar levels are not spiking anymore, to the point where I am rarely taking any insulin. All the weird side issues are gone now and I generally feel well. As I write this at end of December, I now feel like I am almost back to the health status I had in February when I went back to work. I am still taking GVHD drugs as my liver levels are still not normal but they are close.

I did finally get some of my immunizations. On last visit I got five shots: Polio, Tetanus and Diptheria, Haemophilus Influenzae (Hib), Pneumococcal Polysaccharide, and Hepatitis B, in addition to the yearly flu shot last month.

So what lessons were learned in past year? The body has an amazing way of compensating for things that are not working correctly.  This is mostly a good thing but bad as sometimes you don’t realize how sick you are – as I found out the two times I was admitted to hospital when I thought I felt okay. I still have to be diligent about cleanliness, trying to stay away from sick people, and eating and drinking well all the time. And sometimes I need to take compliments from others with a little skepticism on how I look as I have found they are being nice rather than saying “you don’t look too good”!

After all these ups and downs, I am pretty much back to where I was at beginning of year. Hopefully in 2012 my health line will go up in a nice steady line and stay there!

Happy New Year 🙂

When Is A Cold Not Just A Cold?

It has been more than a month since my last post so a lot of things to catch up on…

Last month I reported getting a cold. At the time we all thought it was just a “normal” cold, the only difference for me being that I had the worst sore throat I had ever had leading up to first cold systems. Well, I should have taken that as a warning because, since my last post, I have had several health issues that all seem to be related to getting that cold.

The cold just zapped me of energy. I was basically just going to work, eating a bit then going to bed over a couple week time frame. My appetite started going down and along with that I unknowingly was hydrating a lot less. But still, that is pretty much how most people feel when they have a cold, right? Other than that, I did not feel “sick”, in fact my cold systems seem to be getting better. About this time was my normal monthly doctor visit.  Everything seemed to go well, I did my labs, saw the doctor, and was waiting in the treatment room to get a monthly shot. All of the sudden, the receptionist tracks me down and says I have to go back to the other side of floor and see the doctor again. Oh oh, this can’t be good. Turns out my kidney numbers, specifically my Creatine, were sky high. Normal Creatine is bewteen .6 and 1.2 MG/DL but mine were well over 5. So they had to admit me to hospital immediately, take me off of all drugs and hook me up to IV fluids, which would start flushing my kidneys.  Officially, I had (or was close to having) Acute Renal Failure. This was on Friday, November 18, 2011.

Within 24 hours I felt tremendously better. My appetite came back almost immediately, and all the Creatine numbers fell very fast. By Monday they were back in normal range and I was discharged from hospital that afternoon and I was able to enjoy a normal Thanksgiving with my mom and donor brother’s family later that week 🙂

The whole ordeal reinforces the goal of trying to prevent me from getting sick, as any little thing can turn into a big thing quickly.  This was the first time I got a cold since transplant as I went more than a year without getting sick at all. Pneumonia, Flu, Herpes, Shingles/Chickenpox and related viruses are the big ones they want to keep me from getting. I take prophylaxis drugs for all those conditions as I still have not had my re-immunizations. The longer I go without getting sick, the better.  I did get a flu shot and close to getting immunizations. The doctor is waiting now because I am recovering from latest setback, and because the government has issued a new vaccination schedule for bone marrow transplant patients that hospital is still reviewing. Also, as Susan has reminded me, we may have gotten a little lax in the whole keeping clean, washing hands, staying away from potential bad situations (like room full of people hacking and coughing!), so we are re-doubling our efforts to be careful 🙂

So what happened? The doctor is not exactly sure but we have a good guess. When I got sick, I was consuming less fluids but still taking all my drugs everyday. One drug in particular, Tacrolimus, is very toxic to the kidneys. They monitor the level every month to keep the Tac level just high enough to do its job (it prevents organ rejections, GVHD, and according to doctor is the most important drug I am taking), but not too high to cause kidney issues. I had been taking the same level for 10 months (4mg/day) with no problems. What we think happened is the Tacrolimus built up in my kidneys because I was not taking in enough fluids to flush my daily dose out. So everyday, I was slowly building up more toxicity in my kidneys.

Looking back, that theory explains a lot of the vague symptoms I have had since first getting cold. I was having swelling in my legs after going months with no swelling, I had unusual hair growth on legs and kneecaps,  my sense of taste suddenly went off, and I had a definite loss of appetite. Turns out, those are all symptoms of Tacrolimis overdosing.

So as I write this, I am in pretty good shape other than I lost a lot of weight. But on the other hand, my appetite is back and I have been eating well again. My steroid-induced diabetes is well controlled and the numbers are almost too low as I am having a lot more days where I don’t give myself insulin (which is good). Even my A1C level is at a normal 6 now from a high over 12 just a few months ago. The next step is going to oral diabetes drugs which may come “soon”. I have to be more conscious of drinking a lot of fluids (you wouldn’t think it would be hard to drink a big mug of water everyday) and, alcohol does not count (interferes with drugs!!).  A little wine every now and then is okay.

So in last post, our Baseball Cardinals were in the playoff hunt. Well it turns out, somehow they were able to win the World Series! I didn’t get to any playoff games but I was able to go to the World Series parade. You can find those photos on my Flickr site: http://www.flickr.com/photos/saint_louis_jim/sets/72157627834570303/

My next doctor visit is after Christmas but before New Years Day, although they are having me come in to do lab work every week to make sure everything is staying in line. Look for one more year-end post.

Merry Christmas!