I have finally had time to reflect on the passing of my wife. It has been 6 weeks and I can talk about it a bit and maybe help someone else along the way.
My wife’s donor was her brother. He had a bad motorcycle accident 1 year prior to donating for her. After the transplant was performed, she got GVHD and it was extreme. The docs spent the first week trying to decide if it was GVHD or an infection. (Her eyes were the first to be attacked. She lost sight 2nd day) Once they realized it was indeed GVHD, the doctor asked me if her brother had any transfusions in the past. The doctor explained that cells have memory and that his cells were used to fighting due to having had the transfusions recently.
My opinion is that the doctors should have asked this question of him prior to donating so that they may have been better prepared. I’m sure somewhere in the fine print it was asked, but it did not come to light until after the GVHD was full blown. They spent 2 months getting that under control in the hospital. I think if they were prepared with that knowledge, they would have had 1 more week of treatment at the beginning for GVHD rather that scratching their heads.
I am not saying it would have saved her, but it may have given her a better chance. She died of a blood clot to the lung and due to the fact she was so weak from everything else, she did not have a chance.
You just have to make sure you think and ask all the questions you can. Research all the possibilities. The doctors work for you, not the other way around. It is your and your loved one’s lives. The only stupid question is the one left unasked.
I hope this helps someone in some way.
Butch
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