TRANSPLANT Listing Info

[Colleen-NC]

Merry and a few others have asked me where I stand on the transplant list so I thought I'd post it here for everyone to read.

This is how the listing system designates lungs as it was explained to me.

You are tested and when testing is complete they put all the info into a computer and it then generates a score. This score is in a range between 30 to 50 with 50 being the sickest. The sickest patients go first and therefore receive a higher score. My score is on the low side, I think its something like 31.65. Before they re-structured how they delegate organs, many lung patients were dying while waiting because it was first come first serve. That is why they have changed it to a scoring system. There are many lung diseases and a lot of them can and will kill you with in 2 years. Emphysema usually is not one that will kill you quickly, and that is part of the reason you are lower on the scoring list. Then comes match, there could be someone ahead of me on the list that is sicker but if they don't match, I will get the lungs. It is a complex system and the good thing is that less people are dying while waiting on lungs. Lungs are very fragile organs, kinda like a wet tissue, they must be transplanted within hours or they will no longer be viable.

I hope I have explained this so you can understand, if you have any other questions, please ask. My scores have pretty much stayed the same since I was first listed. I am pretty healthy other than my lungs so I will probably wait a while, but that's OK, there are people out there way sicker than me that deserve a 2nd chance. I also keep telling myself that good things come to those who wait. I have turned this over to God and he will see that I get lungs when its my time.

[Toni]

I am so glad you posted that info Coll. I knew, because I have the close friend that has had two separate kidney transplants, but I know so many people wonder how the waiting list goes.

I'm just so glad that you probably will receive your gift, and I think that for waiting with a good attitude - your's will be special!!!!

[martha]

Thank you, Colleen. That's very informative. I hope you don't have to wait too much longer!

[Toby]

Thank you Colleen. I also found it very interesting and you explained it very well. I too hope you don't have to wait much longer.

[joann]

Thanks Colleen, you explained well! I hope you get the call soon.

[pennypa]

AND, if you get tired of waiting up there, come on down to NC!! There are people at Duke who have gotten their lungs within a week after being listed. But then again, some of them have pulmonary fibrosis and those people are usually more serious.

[maryaz]

That was good that you shared this. Thank you. I often think about you and hope that it won't be long before you can breath better. You have such a young family compared to many of us. You still are young. I am always hoping the best for you.

[lindany]

Thank you for the information, Colleen, You are a brave woman and I sincerely wish you the best.