UCSF Medical Center
I have come to realize I am a documenter. I collect rocks, shells, pine cones, and all other manner of interesting objects I find on our travels, be it down the road or hours away. I take pictures like my very life depends on it. I Iike reminders of where I have been and in that spirit I have decided to document my transplant experience, starting here with the decision to definitely do it. For months I have been seeing doctors, having tests, emailing, emailing, emailing, faxing and faxing again just to be considered for the study. On Wednesday I finally met with the transplant team including Dr. Andy and got very in depth information on the whole process and then, signed the consent forms. After I came home I was feeling somewhat apprehensive about it, the medicines I will have to take for the rest of my life (and which may not be covered by my insurance after the study, even though they are all completely covered in Canada, ahem) are very serious (and expensive) drugs. I've talked to my own Endocrinologist, and Devin, and BFF Hala, whose son with JRA, takes very similar medicines for his disease, I've scoured the internets, and tonight spoke with a lovely woman named Helen, who a year ago had the islet transplant herself. She gave me every minute detail good and bad of her experience, answered all my questions and sealed the deal for me, making me feel confident in my decision to go forward. Well hopefully, I need to have a heart exam on the 9th and if all goes well I will be scheduled for an overnight in the hospital where they will do very extensive tests on especially my kidneys and liver to make sure they can handle the procedure and all the medications, and then a test to make sure I am not making too much of my own insulin, which would disqualify me from the study. I will not get into all the specifics of the study (yawn) but here is a link if you care to read more about it . All of that should take about 6 weeks and then I will have to keep very detailed logs of my blood sugars for one month, and then I will be put on the waiting list for the transplant, which can take anywhere from 2 - 12 months. I am excited to take part in something that has the possibility to help millions of people, oh and if it helps me, that'd be all right too! So there will be long stretches of inactivity, but I will update things as they change. Thanks to everyone for the support and well wishes I have received!!!
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