Wednesday, April 18, 2012

Day 92

I'm sitting the hematology clinic awaiting a bone marrow biopsy. Today is what they call my "hundred-day workup." Obviously, they don't do it right on day 100, as evidenced by the title of this post. It's called the hundred-day workup because it's the tests they do before they turn me over to the long term clinic at day 100.

I got a bone density scan around lunch time. That's basically an x-ray of the hips, pelvis, and lower back. That was followed by a pulmonary function test, which wasn't that bad today. There's a test you have to do in pulmonary that involves quickly exhaling all the air in your lungs, then trying to continue to exhale for 15 seconds or something like that. That is NOT natural, and the last time I got tunnel vision and came just shy of passing out.

This time that part of the test seemed shorter, and she only repeated it once. The first time they repeated it about six times.

That's not really the news, though. The major news came yesterday.

I was given a week before I have to go back to the stem cell clinic, and that's my last visit with them. I'll see them this coming Tuesday, then a week and a half later, I'll see the long-term nurse and be put in the long-term program. The long-term nurse has already called me and told me that their plan is to see me every four to six weeks.

Further, Dr. Jagasia told me they would reevaluate my photopheresis treatments after the next treatments on May 1 and May 3. I may get one more after that, or those may be the last ones. I'm not holding my breath on the photopheresis, but it's clear that they're happy with my progress and ready to let me go on.

He also told me that on cord blood transplants, like mine, Graft-vs-Host disease is common in the first 60 to 70 days, but it's much less common after 100 days. Maybe that infant immune system trains better than adult ones. We won't know on that until I'm further weaned off the immunosuppressives.

At that point, they should be able to pull my Hickman Catheter. The catheter doesn't bother me, but it would be nice to take a shower without having to first use Press-N-Seal on my chest to cover the catheter and its bandage.

I've been a little tired today. Yesterday was a very busy day, and I got a lot done, including a visit with a friend here in Nashville. So I'm going to quit now and finish waiting for my marrow biopsy.

I do want to give thanks to God for his kindness towards me and my family every day. I also want to thank him for all the answered prayers I've seen through this blog. Finally, thank you to so many of you who are doing most of the praying!


  1. Oh, what wonderful news! Praise the Lord! We will be praying for excellent test results.

    Day by day, I understand more and more of your journey as mine is following closely behind. I had my second pulmonary function test last week. All that blowing can give you a headache too. I, too, am putting the Press-n-Seal over my CVC and already dreading having to do this for months. But it beats the alternative of not being alive to take a shower! :)

    You'll have to read today's post. The past two days have been crazy! I will continue to follow your progress while you enjoy getting back to life without daily trips to the hospital. What an answer to prayer! Blessings, my transplant friend.

  2. I am thankful to hear your testimony and cant wait to hear the Victory Shout of a full recovery. Peace be in your House.