I Get to Keep It!

I went up the hill to OHSU yesterday - then I rode the tram back down because the transplant team apparently works at the site on the waterfront. I had a lot of my questions answered, most of them confirming what I had already been told or had pieced together. For starters, they are definitely going forward with the transplant evaluation and there is clearly an urgency to get to the waitlist. I will be going through another series of tests over the next month and I expect to know what my level of priority will be before the end of August. Otherwise, our conversation went all over the place...here are some of the highlights:

• I can keep working as long as I feel up to it, and there's nothing particularly unrealistic about trying to keep going until December, though changes in my condition will ultimately dictate the reality.
• After the transplant, I will need to be under constant supervision for at least 30 days. I predict some of my friends are going to get real sick of me.
• I will be meeting a lot of doctors and support staff over the next little while, and I may not see the same doctor twice for a bit as the transplant team familiarizes themselves with my case.
• It costs nothing to ride the tram down the hill, but it's $5 dollars for a "round trip" ticket up the hill.
• The wait time for a heart in Oregon is six months to a year, and that means there is still a very good chance I will need an LVAD (heart pump) as a stop-gap at some point.
• While giving transplant patients multiple hearts was done in the earliest days, it proved to be ineffective and so my request for a back-up weasel heart was denied.
• I get to keep the old one when it comes out!

I guess I'll have plenty to report in the next few weeks. I was reminded how lucky I am to have so many great people in my life when I learned how having a support network of family and friends around greatly increases the success rate of the procedure. Speaking of family, my mother's journals have arrived (Thanks Jen!) I look forward to getting into those.

In other news, I might have Crohn's disease. 

Here are some pictures of the pills I have to take throughout the day, morning - afternoon - evening.

Weight: 216.4 (ugh), Symptoms: Shortness of breath, mild chest pain, mild nausea, fatigue, fatigue, fatigue