Trials and tribulations of a patient in search of a bone marrow transplant

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Wednesday, March 19, 2008

Donor News

A little bit of good news for a change. Steve got a call a few days ago from the donor search coordinator. He has TWO acceptable matches, unfortunately not perfect, but possible. Both are better than the one who backed out. The one from Europe is a woman, and is off on the C. The US donor, that we knew was off on the A to begin with, lined up on everything else and is a man, i.e. more stem cells. He is number one choice right now. He came in quickly when they requested a draw, which is nice. It took the European donor almost six weeks to schedule the draw. The identity and location of the donors are kept very secret, but I hope that one day we will be able to express our boundless gratitude in person.

After the first round of possible donors didn't turn up anything, the transplant center began requesting draws from donors that were already known to be one antigen off in hopes that the unknown factors would line up after that. They are supposed to have five more "one off" draws coming in this week for further testing, but needless to say we are much encouraged after weeks and weeks with nothing when we started off with nine possibles. Now, all the potential donors still have to pass extensive physicals, but at least there are more than one. I don't think we can find a better match, but will hopefully have some back-ups in case of problems as we had with the last ones.

Now we just have to build Steven up as much as possible, mentally and physically, until he goes in for the next round. He is getting platelets every other day now, and needing whole blood once or twice a week. He's dizzy and lies down most of the time, plenty of problems but no fever and not sick. Wish we could keep him in a bubble. The doctors are adjusting his multiple blood pressure meds to try to deal with the dizziness, but so far it hasn't worked. Driving him to the hospital on Sunday, I looked over at him and saw blood all over his teeth, very Nosferatu or Draculesque if you will. His gums were bleeding and he didn't have enough platelets to stop it.

Because of the time necessary to schedule the donor, they don't think the transplant can happen before mid-April at the earliest. Steve will go back in hospital a week to ten days beforehand to irradicate his system with chemo and radiation to await the transplant. Because of the mismatch in the bone marrow donor, Steven will have to be on immuno suppressants for a longer time, my understanding is six months to over a year. Which will make him very tired and susceptible to everything. He will have to really live in a bubble then. But they are necessary to try to deal with rejection problems. Unlike an organ transplant, where if the match is off only the organ dies, since they are replacing Steven's basic system, they need to keep the new system from rejecting him.

Steve will have a new blood type and new DNA, at least for blood tests. All the immunities he has built up over the years will be wiped out and he will have to take childhood vaccinations all over again.

Yesterday, they did another bone marrow biopsy to see the status of the blast cells. They should tell us the results tomorrow while tanking Steve up with the necessary blood products.

Please send jokes, make Steve laugh.

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1 Comments:

Blogger Holly said...

New blood type DNA.
His basic tissues will not change their DNA.
Chimera time - since adding the stem cells to replace his bone marrow does nothing to change the DNA in his skin, his muscles, his brain....

We just normally take a blood sample to test. But there are also buccal swabs.

More than you wanted to know....

March 20, 2008 at 1:30 PM

 

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