Vicki from the NMDP called on Monday, February 27 to go over consent for the donation and logistics…and there are many. I was on the phone with her for an hour and a half, indicating that I did indeed understand what the program was asking of me (lawyers! No consent is pity anymore. You cannot just consent to something…you have to consent to consent!).
Vicki shared what she is able to with my about the patient–and that is very little. The patient is a 51-year-old male who lives in Italy. He has a disease called Myelofibrosis, which disrupts the body’s normal production of blood cells. Apparently, my HLA markers indiate that I am an even better match for him than even his family is. It is a bit heady to think of someone as your own biological doppelaganger out there in the world. Every word that Vicki utters–even the side-effects of the injections of filgrastim, the potential for the body to be achy after donation–excites me all the more. I want to do this! As for the bit of pain, I say bring it on– I see it as a battle scar, one worth wearing if it gives someone else another chance at life.
Vicki warned me that once I give consent and the Dr. has cleared me after my physical, the patient will be put on a high chemotherapy regimine for two weeks before the donation. This will get rid of his immune system, in the hopes of lessening the chance that his body will atack the new blood cells given to him by me. She also explained that although I can say “no” to donating at any point, I must understand that if I say no after the patient has received the chemo, he will die. Wow, in some ways, after that point, his life is somewhat in my hands. This is a very crazy thing to think about.
Vicki then told me that because Italy is more strident in their privacy laws, the patient and I will never be able to communicate directly. Ok, Italy, if both the patient and I consent to knowing whom each other are, why do you care? I have to say that this news is a bit disappointing. On the one hand, you are being told that you are this patient’s only chance for a cure, his only chance to live. And then you are told you can never know who he is.
I am not sure about you, but this seems anti-climatic. In some ways, you are a miracle for this person, but then you are told you can never know how he is doing, what he looks like, what his family might be like. I have to admit that this a kind of rough. I did not have grandeur illusions that I would be wicked off to Italy to meet the recipient (ok, maybe I did), but I was hoping that we could exchange an email or two.