Weird Science

Another busy day.
Started off the day meeting with a 2nd transplant coordinator. Had to sign and fill out a shit load of documents.

Our consult with the financial analyst afterwards was disappointing. She only provided info regarding our insurance policy and what it covered. Helpful but I expected more.

Then the transplant surgeon came in. He was a pleasant Indian lad. Asked Lee all sorts of questions about his medical history and PF symptoms. Followed by a short physical inspection. Afterwards, he gave us a slew of information. Some stuff we'd heard before. You know, the basics about lung transplantation. Remember, this is our 3rd time going through this process.

Risks: dying, excessive bleeding, prolonged ventilator support, rejection and infection. For Lee there's the added risk of reflux. Can cause serious problems. Lee might also need to undergo a surgery called Fundoplication. It's a common route for patients with esophageal dismotility. Things to think about.

And the dreaded feeding tube issue. The surgeon seems to think it would only be temporary. But he's not an esophagus expert. He also believes Lee should be able to return to eating normally. Again, he's not the expert. We've heard that there is a portable version of the feeding tube. But I should stress that this issue is make it or break it for Lee. Luckily, we meet with the esophagus specialist on Thursday before Lee gets an endoscopy. After we talk with him and ask questions, we'll have a better idea of where Lee stands.

Here's a few stats:
> The first year after transplantation is the hardest.
> After 5 years, 50% of lung transplant patients are still living.
> There is an 80% chance that Lee could return to where he was physically 7 or 8 years ago.
> Transplantation doesn't necessarily make you live that much longer, but the quality of life is increased with a successful surgery.

I asked the surgeon if patients were ever allowed to watch a live lung transplant. No but he was able to pull up a video of the surgery, done here at UPMC. If you are interested, here's the link. I should warn you it's gross, made me feel weak, but quite interesting.

http://www.upmcphysicianresources.com/upmc/videos/how-i-do-it-recipient-surgery-minimally-
invasive-lung-transplantation

We didn't get back to the hotel till about 3:30. Took a HUGE nap. Then off to dinner. We had hoped, and still hope, we can do something fun while we are here. All work and no play makes Leslie a dull gal.