Living Well with a Bad Diagnosis - Lung Disease

Saturday, November 26, 2016

Lung Transplant Holding Tank

We had a lovely Thanksgiving with family. Lots of conversations going at all times, mom was happy to be with her oldest daughter and her granddaughter and all was right with the world. Yesterday, we stuck our nose out into that world just to buy groceries and a bit of lunch. There was a nap involved, too!

Ron joined my pulmonary rehab class after his program at another hospital shut down less than 6-months after his lung transplants. We have become friends and he has shared so much information with me about the entire process of lung transplants. He also is nice enough to answer all my questions. We are even on Facebook together. He has Scleroderma. Five years ago, my university hospital would never have approved a transplant for anyone who was not in excellent health, expect for the lung disease. Secondary disease? Forget it. Times have changed. He has celebrated his first year with new lungs and is flying through all the recovery and maintenance processes. 

He sent this article to me today. It is about a new process of being able to keep lungs outside the donor's body for more time, thus more lungs are available for transplants. Ex-vivo Lung Perfusion. It is interesting. I had heard about it.

I also discovered that in California, there is no one dying waiting for lungs. They are available thanks to the education and passion of a male nurse at another university hospital. Years ago, he discovered that usable lungs were not being transplanted as it was not a priority. He put in protocols, taught other hospitals throughout the state how to process them properly and now they are available.

Years ago, I was at a seminar presented by two university hospitals and the head of one's transplant program told this story. A woman with familial IPF was transplanted. Three years later, her doctor received a phone call from her asking for help regarding her brother, also with IPF. He was in a hospital in another state failing while waiting a long time for lungs. The doctor said they would accept him, he was flown in and had lungs within a couple of days. It is sad that other state do not have such availability. If you are in another state which has few lungs available, please share this story with your doctor and encourage them to contact any university hospital in California for details.

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