Hi Everybody,
Me and my mom just got back from a week in St.Louis. We were there for lung transplant evaluation because pediatrics lung transplant aren't done in New York.  We just got word. The good news is that I am an excellent lung transplants candidate and they are going to  put me on the transplant list as inactive until i am ready. They also found out that I have an extremely rare disease, Pulmonary Capillary Hemangiomatosis  with no treatment other than transplant. What i am on now is actually making me worse (heart failure and water in my lungs) so they are rolling back my IV medication. It will take 4 months to ween off if everything goes well.  The concern is that my lung pressures are very high and have gotten higher since my diagnosis so I have to be careful and get checked often. 

So if i will have to eventually have lung transplant, why not do it now?  We have been told that lung transplants have a 6 year timer and they wont do it until i reach the narrow window of being sick enough and not too sick that i wont make it through the procedure and recover. We will have to go to St. Louis every 6 months until they move me to the active list and then i will move there until a lung donor is found, the procedure is complete and i have recovered.  St. Louis is a good town and the Children's hospital and all the staff are amazing so i am in good hands.