Friday, May 24, 2013

17 Months after Bone Marrow Transplant, GVH, and Recovery

It seemed like a good idea to give an update on recovery.

I am almost back to full strength. I work out most days trying to achieve that. I still can't do a pullup, but I can do 20 decent pushups, and 13 or 14 excellent ones. I can press 65 pounds overheard 10 times. I used to be able to do 75 pounds for 15 reps. I was pretty average strength before leukemia. I was hoping maybe the baby's blood system I received might make me suddenly prone to great strength, but it doesn't look like it. It's taken over a year to get to doing 20 pushups!

Of course, last May I could barely hold myself in a pushup position, so I guess that's not terrible.

I ran a mile straight without stopping last week. That was a great achievement for me, a real "mile"-stone, my wife called it. (Funny girl.)

It took 13:56, which is really slow. On a treadmill, it would have been a 4.3 speed on a treadmill. A real fast walker could have kept up with me. Still, it was hard, very hard.

But I did it.

So I waited a couple days to give myself a rest from my "marathon," and then I tried one time around our warehouse at work, which is about 1/5 of a mile (not a standard distance at all). I was just hoping to get around the warehouse in 2:15, but I just took off at what seemed a pretty fast running speed and hoped for the best.

Halfway around the building, which took about 45 seconds, I still felt great. I couldn't believe it! 3/4 of the way around the building, it was a huge chore to keep running, and my pace slowed terribly. I'm sure I looked like I only had partial control of my body. So I slowed to my mile jogging pace I'd used a couple days before and sort of shuffled to the end.

One minute and forty-eight seconds!!! Whoo hoo!

That's 9:00/mile. In fact, since it's really a bit more than 1/5 of a mile, it's less than a 9:00 pace. That's a decent jogging pace, not a run, for a 51-year-old that's in shape. Six years ago, I could run 8 miles at that pace. Today, I can only do 1/40th of that distance, but I was THRILLED.

GVH & Medication

GVH is Graft-vs-Host disease. I should have a tab at the top of the page with the others for what that is instead of defining it over and over again. If you're still reading this, you probably already know what it is. If not, stay tuned, and within the next week, I'll do a GVH page for this blog.

I've had an ongoing skin rash that has varied in strength. My doctors, and the doctors at the Bone Marrow Transplant Information Conference that I went to in Costa Mesa, CA in April, told me that my rash is acute GVH of the skin. It used to be that if you had a skin rash due to GVH more than 100 days after transplant, they called it "chronic." Before 100 days, it's called acute, and it's considered more dangerous, but less likely to be continue. Chronic is less aggressive, but it's more likely to linger.

Mine, however, is still acute, a year and a half after transplant.

I have no idea whether that matters much.

I do know that either way, the doctors play with an immune suppressor like Tacrolimus and a steroid, like Prednisone, that works differently than the Tacro, but also suppresses the immune system. My rash had gotten bad enough that in April, they had doubled my Tacrolimus dose and increased my Prednisone to 30 mg, even though they thought the 20 mg I was taken were not good for me.

We also use a steroid cream called Triamcilone 2-3 times per day over my whole body. We started that regimen early in April, and it took the whole month to get the rash under control. Usually, when they try increasing my steroids, we can get everything cleared up except my forearms and lower legs, and my lower legs are much worse than my forearms. In late April, I added another treatment, which I am not ready to reveal yet, and my lower legs cleared up as well. We were thrilled!

So this month, on May 3, they dropped my Tacro back to 1 mg and had me drop to 25 mg of Prednisone. I was very diligent with the Triamcilone cream, and after a week. I was still clear. A week ago, they had me drop to 20mg of Prednisone, and the rash came back lightly on my lower legs. We were still thrilled it wasn't progressing, and in the last couple days, it cleared up again!

I am, however, facing some gut issues the last couple days, with a lot of bowel movements, though no diarrhea. Today, my stomach added a lot of burping that doesn't smell very good. In fact, I was driving my kids to town this evening, and when I burped, we had to roll down the windows to blow the smell out.

That could be GVH, too. I wrote to Vanderbilt using "My Health at Vanderbilt" online, which puts my emails right into my medical record, but they won't look at that until Monday. If it becomes an emergency, I have to call to get them on weekends.

GVH of the Eyes

I didn't get any GVH of the eyes until November or December (10 months out from transplant). It was pretty bad for a while, but it seems to have mostly subsided. I wrote a blog telling about pressing on the inner corner of my eye to relieve the GVH attacks. It's still working, and basically I hardly ever have one now. I can drive without sunglasses, read, watch a movie, and type on the computer without problems. I'm still pretty sensitive to wind or a fan blowing, and I had one GVH attack initiated instantaneously by a sudden bright light a couple days ago. Pressing the corner of my eye got it under control, though.

The Future

During the treatment for leukemia, things were pretty difficult most of the time, so it was all pretty interesting in and of itself. It was easy to find things to make jokes about, so it was easy to keep the blog an enjoyable read. This post was a bit more difficult. I wrote this for the sake of others going through the same thing I am so they can compare progress and maybe be encouraged that things that seem to go on and on can actually come to an end. I know I was wondering about the rash on my lower legs.

Maybe in a future post I can tell you the kind of days I have, being a workaholic, swamped father, husband, and Chrisitan teacher, while trying at the same time to be a peaceful, praying man who lives by the Spirit of God. There's still plenty of humor in that pursuit!

Maybe even some encouragement.

1 comment:

  1. I always love reading your blog. It indeed has been a journey. I still pray for you and your family. I am sure this post will encourage somebody else who has this going on with them.

    God continue to Bless ,strengthen and heal you . Love you dear brother