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

Yesterday was a good day.

She's keeping me from falling down the ravine

Yesterday morning I woke up in a cabin on the mountain. I married the woman I love in front of the fire place. I spent the day with friends and had a great dinner with some of my favorite people. I had a great weekend.

I had the last of my transplant evaluation trips to Seattle last Wednesday (11/7). There was a lot to do, but we got it all done. Had a right heart cath, met one of the transplant surgeons, even managed to squeeze in an unplanned visit with my cardiologist there. They should be presenting my case this Thursday, so it's possible I'll make the wait list by the end of the week.

I got a call this morning from the office of my EP this morning. My ICD has been sending them signals that my heart rate has been irregular and elevated. "Not dangerously irregular," he said. That sure made me feel better.

Tonight my heart is racing and my fluid load is high. My hands won't stop shaking and I'm having trouble concentrating, making this entry a real chore. My options are to wait it out or go to the hospital, where they'll run a bunch of tests while I wait it out. So, I'll wait at least until I can tell if it's getting better or worse before heading to the emergency department. This is probably a result of not eating the way I should and over exerting myself the last couple of days.

Anyway, yesterday was a really great day.

Weight: 219.2, Symptoms: Fatigued, short of breath, light-headed, nausea, shaky, confused, and the skin on my hands seems to be changing color. Seriously, that's what I get to call my doctor about tomorrow.

 

I'm going to ride the damn bike again.

A lot has happened since my last post, so here goes.

Andrew lecturing me

For starters, the second trip to Seattle on Friday 10/19 was more encouraging than the first. I met with the infectious disease specialist who seemed perfectly competent and the nutritionist who might have been a little crazy, but was otherwise delightful. I met with the coordinator again to finish my required education on what to expect and had a couple more tests done. The traffic home was worse the second time.

My rhythm troubles worsened as sometime over that weekend I developed an atrial flutter. My heart was racing and my shortness of breath was so intense that I barely felt functional. It was a week before it was diagnosed, and having gone on for so long, they weren't able to correct it via cardioversion because a clot might have developed in my heart and could potentially cause a stroke. I underwent a procedure on 10/31 (spooky) to check for clots (none), and then was zapped back into rhythm.

Next week is going to be interesting; I'll be repeating the exercise stress test on

Brent: "Sit in the chair!"

Monday, I expect to perform much worse than I did in may, but it's one of those tests that my cardiologist at UW wants to repeat. Apparently I "don't look as sick as the numbers indicate", so I'm going through the whole course of invasive tests again. My next trip to Seattle will be on 11/7, when I will have multiple invasive tests. I'll also meet the transplant surgeon. Oh, and on Tuesday I start taking insulin.

While I'm on the topic, here's a list on conditions that are almost certainly a result of living with cardiomyopathy/CHF: Anemia, gout, diabetes, hypothyroidism, and I might as well throw in anxiety and depression. Good times.

Anyway, I have something to look forward to next week, something that makes all of this struggling worth it (see below). I'll try and update after the next Seattle trip.

PS If you follow me on facebook, I have a habit of saying 'brb, heart surgery' before every heart related procedure. I promise that if it's something more dramatic than sticking probes in there, I'll be sure to specify.

Weight: 215.8, Symptoms: All of the usual, but mostly just very, very tired.

6 hours to Seattle

Not really, it was 3.5 hours to Seattle, but if I get on the waitlist, I'll be able to wait in Portland as long as I can get to Seattle in 6 hours when the time comes.

The visit itself contained few surprises. I met with the transplant coordinator and the social worker and we talked about the same kinds of things that I'd covered with the people in those roles at Providence and OHSU. They both seemed competent and helpful and it was a generally good experience.

The visit with the cardiologist was a little discouraging; I'm to repeat tests that I've gone through within the last month or two, and that means more trips to Seattle in the near future. In the very near future in fact, as I have another batch of appointments on Friday, including the infectious disease specialist, nutritionist, back with the coordinator, and some tests. There will be at least one more trip in the next week or two.

As always, I wouldn't be able to do any of this with out the support of my friends, whom I'm certain will be sick of long car rides with me if they aren't already.

In other news, I'm having a test tomorrow to try and rule out Crohn's (yay) and I've been in an out of clinic trying to get my internal defibrillator to do a better job of handling the recent uptick in irregular heart rhythms.

Oh, on fun consequence of all of these tests this week is that I'm essentially required to fast for most of the next 3 days. I will be making the most of my brief windows of exceptions.

Weight: 216.8, Symptoms: Fatigue, shortness of breath (worse than normal), dizziness, nausea

It's been a long wait, but there's more waiting to do

I haven't posted here for a while. It took a lot longer to hear from the University of Washington than I'd expected. But things are booked now for Monday 10/15 - and I'll be able to take care of the evaluation in just one day, so no long term stay in Seattle for now. My sisters came out from back east to visit. I don't think I'd realized how depressed I'd been until they got here. Having them around was amazing.

There were a couple of weeks there where I waasn't getting much sleep, despite the constant fatigue. That seems to be done with, now I just have to try to sleep less than 12 hours a night. In any case, I think I prefer oversleeping to the alternative.

I feel like I should have more to report here, but I'm sure I'll have plenty to say after Seattle. My symptoms are getting incrementally worse, but I've not had any serious episodes for a while.

Weight: 216.6, Symptoms: Mild constant nausea, fatigue, shortness of breath, mild chest pain, dizziness, anxiety, depression