Hi Tina. Thank you for the response. And a BIG Thank You for putting me on the prayer list. I have no doubt that the amount of prayers out there for me are what is keeping me going. I have no legit score right now as I am not currently listed, but Mayo feels it could be soon or possibly a few years out, they just can't tell because my case is so weird. I had my second transplant eval testing a few months ago and was deemed doing too well still to be listed. They said that if I do get listed, I would enter the list as a 30. The reason being is that I have rare genes that are going to be difficult to find a cross-match for, but I could rise on the list as I worsen and wait time increases. I understand that I could also go downhill rapidly such as in your case. My doctors are a little stymied because I am very active for someone who has 32% lung function. They are also stumped because my ct scans don't show significant lung damage to cause the amount of low lung function. I also Have a rare lung disease and rare blood type. Go figure, I knew I was a rare bird!

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