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BrianFlaigmore Wed Sep 19, 2012 12:51 PM

A bit worried, questions about post transplant life
Hello there,

I was wondering if anyone had any experience like this. Today is +105 post MUD transplant for AA. Everything until last week has been great, sometimes sluggish, but great. My WBC to that point had crawled to 3.8. I have felt fantastic and am very grateful for that. Then last week I had stomach pain and went into the ER and it turns out I had to have an appendectomy (a great way to get your white count to spike to 10.5!). The surgery went just fine and then yesterday I went for one of my now twice monthly appointments with my transplant doctor.

Previously my platelets had been holding out at 90,000, WBC 3.wherever, and HGB at 10.5-11.

Yesterday my platelets fell to 49,000, WBC went up to 7.5, and HGB to 11.7
For the most part these were great except the falling platelets bring to mind the same process that began all of this.

Then another piece of news was added that had kind of made my wife and my hearts drop. The 100 day BMB came back 100% donor marrow (Wooo!) but for some reason my T cells (CD3) were only 80% donor even though previous peripheral draws had shown 98+.

Our doctor said that the platelets could very well be due to the surgery to remove my appendix. But he said that the % is a bit concerning and at this point he is hoping for some GVHD to show that there is some battling going on.

Sorry for my length, I was just curious if anyone has experienced this or something similar before. I would love to talk to someone about this, it's just a bit scary.

Thank you!

Mary4Mike Wed Sep 19, 2012 08:34 PM

I can understand how you would be concerned about these changes when everything was going along so well, but honestly, I would listen to my doctor and expect a bit of GVHD to show up. Have you had any at all like perhaps dry mouth, dry eyes, mouth sores? If not, you have been blessed. The surgery with anesthesia and all would be a hit to someone with a normal immune system, but a transplant patient 100 days out~~~~~. We were told that platelets are the last thing to come back and for my husband that was definately the case. The fact that your HGB is rising is encouraging. Try not to borrow trouble (I know that is easier said than done ):). Our experience with the transplant docs has been great - very available and on top of things. Share your concerns with them. Share your concerns with us.
Take a deep breath. We're here for you.


BrianFlaigmore Wed Sep 19, 2012 11:06 PM

Thank you for that. We're not really freaking out, but it is nerve racking knowing that I still have some of the T-cells in me that started all of this stuff. To answer your question about GVHD, no I have had absolutely none to this point. We have been told that this is pretty awesome considering I had an unrelated donor. We are very thankful for that! :)

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