Happy Birthday to Me

Xmas dinos and blankets, Love our tree/

So, it's 1 AM and I have that boring, old run-of-the-mill type insomnia. It's not due to my symptoms, I'm just not able to stay asleep. Seems like a good time to catch up here.

Yesterday was my birthday, the day before was Xmas, I got to spend two awesome days with Melinda playing games, watching movies, and visiting with her family.

If this is the first place you're hearing about it, I AM on the transplant wait list. It was a bit anti-climactic because I was on the wait list but on hold while they sorted insurance details out. I didn't expect to be activated before the new year, but they got it done before Xmas. So now I'm waiting for a phone call that might come anytime day or night, and I'll have 6 hours to get to Seattle. My bag is packed.

Waiting for birthday pizza.

Symptomatically, I've had a couple of really rough days in the past week or two, but I'm currently doing fine. Every time things get rough, I feel like I'm teetering on the edge of needing the LVAD heart pump, but even that has become a less daunting prospect. Turns out the recovery time for the LVAD would be mitigated by my moving up significantly on the wait list, so it's not the extra 12-18 months I'd worried about. It might add no additional time at all, but no one can predict when the right heart will be available.

All-in-all, by biggest complaint these days is how bad my shortness of breath is. I can barely manage to walk a block at a reasonable pace, and two or three blocks at my snail's pace is enough to require a sit down. Doing things like laundry, dishes, and cooking has become a real challenge, and won't be possible for much longer. I vacuumed the rug the other day, it felt like I'd run a marathon.

Weight: 212.4, Symptoms: Severe shortness of breath and fatigue, mild nausea, some dizziness

Quick update

My case was not presented on Thursday. No explanation. Maybe next week?

I'm unhappy.

Tomorrow?

Well, it seems like every time I make a post I'm correcting something I said in the last one. I thought they would be presenting my case on Thursday 11/15. This is when the transplant team gets together and decides if I should be placed on the wait list for transplant. Unfortunately, my cardiologist at UW took that day off, and given that these presentations are only done on Thursdays, Thanksgiving pushed it back even further. I was not presented last week, again because my cardiologist wasn't available. So, it should be tomorrow.

I can definitely feel the decline. I remember a time that I went up two flights of stairs with a full bag of text books on my way to class and it left me so winded realized that I kept my students waiting 10 minutes while I caught my breath. At this point, walking from one end of the house to the other is enough to put me out of action for a spell. My cardiologist here in Portland says I probably have a few good months before surgery will become necessary. I hope that surgery is a transplant and not a pump. That would push the process back by at least a year.

Weight: 212.8, Symptoms: Shortness of breath, nausea, fatigue, dizziness