It’s been awhile since my last update. In April, I had a procedure that kept me overnight & was my first surgery after transplant. I have one more procedure after Labor Day, hoping this is the last of it for a good stretch. This is the flare up of my TSC which usually acts up after the LAM settles down.
I woke up to a pleasant surprise this morning. I have to thank my tweetchat & Twitter friend, Joe Babaian, for passing along this lead.
This release is very preliminary. That said, I found it interesting as I have always felt (as have others) that it wasn’t just the MTOR pathway alone that was at work in both of my diseases (LAM & TSC). This seems to confirm that theory.
Healthcare issues aren’t nationalistic. When one country faces issues with accessing vital medicine or another important issue, others surely may follow suit.
Today is one of those days…
LAM Action & Tuberous Sclerosis Association friends, please take heed for future reference for those you serve who may have had transplants or may need them in the future. Even though it primarily affects renal transplantation & drugs now, it sets a dangerous precedent for similar problems with other organs.
I am sharing this presentation today because as my lung disease has advanced, this issue has been the bane of my existence. Chest pain is one of my most common symptoms & sometimes the one I find hardest to control & deal with. It’s also one that when it flares up slows me down considerably.
I’ve spoken to the American Thoracic Society (ATS) before, worked with them professionally through Medscape, & on some other nonprofit projects. I love this organization for several reasons. One of them being that they circulate so much good information on so many different diseases.
The Lung Transplant Foundation (LTF) Foundation also puts great & accurate information out on their social media outlets. That’s how I came to find out about them.
I’m glad both organizations put together this joint effort for this week to raise awareness about lung transplants.