blood-tests-diagnose-depressionI now have a routine (YEAH!!!) and am adding to it little by little. Recovery is a full time job, it takes work and a lot of effort, if I want to be on the path to wellness. AND THAT IS MY PATH. What is happening now is just a big pothole in the road that we have to navigate around. I could end this post here, but I think you want to know what is going on and this is also for other transplant patients.

We made the trip out to St. Louis yesterday and things have not improved. The Med team was able to rule out 3 of the 6 possible reasons for the drop in my platelet count. All the lab tests came back negative or were what was expected of a bone marrow transplant patient at Day 75. Clearly dropping the dosage level of the Prednizone is having an impact on them and they knew it would drop some (in fact all my counts are lower this week) but not this much. My platelet count is now at 39,000. So they decided to bring up (10mg) the dosage of Prednizone to 30 mg/day. The hope is that this will prevent further decline of my platelet count, until additional tests come back. And all of this is much more complex than I am sharing, because I’m still trying to understand it.

Next week we go back to check in. We have to go to St Louis twice though. On Tuesday we will see where my platelet level is. That will determine if I need a transfusion. They also are setting up for me to get infused with a “growth” drug (IGG) to spur the platelets to get active and grow more. This infusion takes 4 hours and getting platelets takes another 3 hours. So we have to go back on Thursday to do these. They can’t do them together, so it is going to be a really long day. Unless, of course, things significantly improve with the Prednizone. We decided to wait until next week with the IGG so we can determine what drug is doing what to my platelet count. Being the scientific sort, I pushed for that option, because, how else would we actually know what did what.

But there is an underlying problem that needs to be discovered. The Prednizone by itself is not causing my platelets to drop this much. What we have left is that one of the drugs is impacting my platelet counts, there has been a change in the amount of donor cells, or there is not enough stem cells that transform into platelets to propagate.

Let’s start with the positive or easiest solutions. 1). The IGG works its magic and it overcomes the underlying problem; 2). I’m taking an antibiotic to control or prevent a specific fungus from growing. This drug sometimes can decrease platelet counts. So all we have to do is switch it with another drug that does the job. We are not doing it this week because of the remaining test that has yet to come in. The remaining test has to do with the donor stem cell line.

Not so positive, but something the Med team can begin to do… So next week we will know whether the donor stem cell line is still at 100%. If it is not, my MDS has come out of hiding and is beginning to grow. But the positive is that is just part of that plan, that they have to play with the meds to allow the donor cells to kill my MDS cells off, or knock them back and keep them under control. They have to be very careful about this, because in doing so, I’m going to get GVHD in the gut worse than it is and it could affect many other organs. I trust my Doc to get that balance right, if that is the problem.

Not so positive, and hopefully not a problem. This requires an early bone marrow biopsy to determine. YEA! It is possible that when I got my transfusion I did not get enough of the stem cells that turn into platelets. I know that makes little sense, because it is a single stem cell line that produces all of your different blood types. And I’m not sure I understand this correctly, but when they “harvest” them from the donor many already have a predisposition to turn into a specific type of blood cell. When they harvested the stem cells from my donor, we really did not get as many as they had hoped for. So it is possible that I just did not get enough donor stem cells to complete the job. We would have to ask the donor to donate another time. I believe in my donor and she is there for me to save my life. So to my angel, and I wish I could tell you this personally, thank you with all my heart for giving me life.

~ Mark

7 Comments

  1. Kathee Zurian

    Thinking of u and sending my love! xok

  2. Ingrid Lindberg

    Mark.
    Thinking of you and the family and sending you all sorts of goodness and love..
    Ingrid

  3. Mark,
    Just wanted you to know that I am hoping and praying that the drop can be reversed with the least invasive method possible. Hang in there!!
    Monica

    • Thank you Monica! It’s frustrating, but staying positive and going with the flow.