Wednesday, January 16, 2019

And now Seattle

I'm in Seattle. I was brought up here from Portland by ambulance last night. I don't know how long I'll be staying at the UW Medical Center, a couple of days to a week, maybe. I should probably start at the beginning.

Serious face in Portland
A week ago (1/9/2019), a friend took me to the ER in Portland. I was have a real hard time with my heart racing and shortness of breath. Turns out, I was carrying a bunch of fluid in my lungs (Pulmonary Edema). So, I was admitted to the hospital with the goal of reducing the excess fluid in my system with diuretics and restricting how much I drink. They also ran a bunch of tests to make sure there wasn't anything else going on, but there was nothing interesting to report.

The next morning, I placed a call to the transplant coordinator in Seattle to let them now what was up. The team at UW, being responsible for me as a potential transplant recipient, wanted to be involved in my care. They were in touch with my doctors in Portland, and asked that I be transferred up as soon as a bed was available.

Serious face in Seattle
By "available bed" they really meant an empty room with no one local waiting for it. It wouldn't make sense to take me out of a safe situation if someone in Seattle needed the care. So, it wasn't until the following Tuesday night that I was loaded into an ambulance and taken up I-5.

So, I'm feeling much better at this point, but there is still fluid left to deal with. I was on some real heavy doses of diuretics in Portland, and everyone involved decided my kidneys needed a break. They are trying out new medicines and tweaking with doses of others to improve my heart function and how I feel in general. I think, whether or not they are successful, what can be accomplished with me through medicinal management is just about run out. They may send me home feeling better, but that might not last more than a few weeks. I just have a feeling that there is going to need to be a more aggressive intervention. If not a transplant soon, than an LVAD.

Weight: 210 lbs, Symptoms: Shortness of breath, light-headedness, constant

fatigue, some nausea, anxiety, depression

Thursday, December 27, 2018

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

Friday, December 7, 2018

Quick update

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

I'm unhappy.

Wednesday, December 5, 2018

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

Monday, November 12, 2018

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.
 

Sunday, November 4, 2018

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.


Wednesday, October 17, 2018

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