Today Darren and I spent a couple of hours going over what happens next with my wonderful co-ordinator, Tara. It's official now. The papers are signed. I am on the list!
I feel like I just woke up from a dream. I can't be in denial anymore about this. I have a pager clipped on my belt now that reminds me I am one beep away from starting over. It still not that simple though...
Let me take you back to Jan. 31, the day of my regular scheduled follow up with the Transplant team. After looking over my recent blood work,Gastroscopy results,calculations...yes, there is a bit of math involved if you can believe it, and talking about my case at 'rounds'(with the other Doctors etc.), they all decided that it was time to activate me on the waiting list.
I was shocked, anxious, relieved, overwhelmed, terrified, and just sort of...blank. I know all too well what it's like to feel one emotion to the fullest but not twenty all at the same time!
How long do I wait? Well, it's difficult to predict. I don't know how many times I've heard that before...lol. Some people are matched with a suitable donor immediately, while others wait for well over a year. The average wait is from 1 to 12 months but in my case it may be longer. They don't know why but finding a donor with a B+ blood type is few and far between. The Team has not had many in the last couple of years. Ya know, even though I've known this fact for quite some time now, it's still hard to swallow.
How long I wait will depend on how easy I am to match, and the seriousness of my condition at the time.
There is no order to the wait list- it's not first come, first served. When an organ is available, the list is checked to find the best possible match at the time. Some people are harder to match because of their size and/or blood type, and unfortunately this is where I fall short (re:blood type).
So now I am supposed to be getting my overnight bag ready and our laid out plans ready for Gage, because even though it looks like I could be waiting for months and months...looks can be deceiving.
On another note: I also learned that I have Gastric varicies in my stomach. These are tiny blood vessels that have become enlarged due to blood trying to travel to other organs because it can't flow through my scarred liver. They have very thin walls and carry high pressure. There is a potential danger that they may break or burst, causing a serious bleeding problem in my upper stomach area. I think it's called a variceal bleed. So, they doctors want me to go on a beta-blocker called Propranolol, a type of heart medication. Their hoping to slow down my heart rate therefore lessening the chance of a variceal bleed by about 20 percent.
Well, I think that's about all I can handle for now. I've had a lot to take in and adjust to in the last few days...I'm pooped:)
Love you all....
Dear sweet Robin, you are not alone in this. We are here for you, day or night, for whatever you need and however long it takes. You and Darren have been very brave through all of this so far...now it's time to prepare for the next step. I pray for all three of you every single day...I believe in the power of prayer...and I know that God will see you through this, too. Love you lots! Mom xo
ReplyDeleteI know you are mom, thank you!
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