One of the most frequently asked questions was always about "The List," people thought that since we had been on the list for 3 years, that our time automatically had to be coming soon. I never quite knew how to explain how the list worked, until I read the following.
Contrary to popular belief, waiting on the list for a transplant is not
like taking a number at the deli counter and waiting for your turn to
order. In some respects, even the word "list" is misleading; the list is
really a giant pool of patients. There is no ranking or patient order
until there is a donor, because each donor's blood type, size and
genetic characteristics are different. Therefore, when a donor is
entered into the national computer system, the patients that match that
donor, and therefore the "list," is different each time. - organtransplants.org
I like how they took the time to explain just how "The List" works, because even as a caregiver it was hard to explain and understand it. I really wish I would have seen this before, as it would have definitely relieved some of the anxiety that I had leading up to the transplant.
Hello Jennifer,
ReplyDeleteFirst, I wanted to extend my warmest regards towards you and yours. In reading and learning about your recent experience(s) around this, my heart just welled up with compassion and a bit of sadness and that was just because I could not imagine going through what you have experienced and how very hard that had to be. I wanted to thank you for sharing in such a brave way your own personal story, and to thank you for passing on all this knowledge and information for everyone else. I found it to be so interesting, and was fascinating to learn the truth around "the list" and what it truly means and entails.
Sending positive, warm and healing thoughts towards all of you.
Sincerely,
Lara L.
Thank you Lara! I have to say this blog has kind of helped in being able to express what I have had to keep bottled up for so long. I have to say, "the list" was very scary to me. We literally went 3 years without hearing anything, and I was so scared that we never would hear. I think even me coming back to school was part of preparing for the "what if's" that came with the kidney failure. It is so nice to finally be on the other side looking ahead instead of behind.
ReplyDeleteThanks!
Jen