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

Tuesday, October 9, 2018

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

Saturday, September 8, 2018

Maybe sometimes it is good news

This is unpleasant
So let's start with the good news: I'm back on the path to transplant. My hospital stay last week was to double check the pulmonary hypertension the was keeping me from being a good transplant candidate and the numbers came back about as perfect as they could. Of course, it can't all be good news.

While I am extremely relieved that I'm looking at a chance to get the procedure that gives me the best odds of living as long as possible with a relatively normal quality of life, OHSU is still suspended indefinitely. That means I'll be headed to UW in Seattle. We'll have to go through most or all of the evaluation again, which I sincerely hope they will have me do as an inpatient so I don't have to find housing and have things stretch out over several weeks.

More pleasant
From my discussions with my cardiologist here in Portland, it's possible that once I get to a waitlist, I may be able to stay in Portland, and after the surgery I might be able to get my aftercare transfered back home as well. If these things don't happen, I can only imagine how much it will cost to stay in Seattle for months during the wait and recovery times. And I can't imagine getting through all of this without my support people. Once again, it comes down to money.

Anyway, I'm taking this all as a net positive and working to do what I can to mitigate the negatives. One life altering surgery is better than two. Of course, as fast as things have been changing recently, who knows what next week will bring. I'll keep you posted.

Weight: 214.6, Symptoms: Anxiety, I-didn't-think-the-fatigue-could-get-much-worse fatigue, mild chest pain, shortness of breath, dizziness.

Thursday, August 30, 2018

And just for fun, let's change the whole game

A lot of things did not go as I expected.

When I made my last post, I had assumed that LVAD surgery was eminent. I went into the hospital on Wednesday and slowly learned what the time line was actually supposed to look like. Tests through Friday, then scheduling the surgery the following week, leaving me in the hospital for a week or so without even know when surgery was going to take place. But that's not how it panned out. I was released on Friday with the plan to meet again with the team the following Thursday (today). The reason I haven't updated the blog until today was because I really had no idea what was going on. Now I have some idea.

First of all, there's this. My doctors at Providence, given the fact that I had been deemed unsuitable for transplant at this time by a transplant team on the verge of collapse, and given their own judgment, have suggested a second opinion/evaluation with another transplant team may be in order. So the new plan has me being admitted to the hospital on Tuesday of next week, undergoing a series of tests (one long test, really) to check on the pulmonary hypertension that ruined my eligibility in the first place. Then, toward the end of next week, I'm either going to be referred to another transplant program, most likely in Seattle, or have the LVAD surgery the following week.

I can't begin to express how frustrating this is. Going straight to transplant has always been the priority, and finding out that I might still have a shot at that is very exciting, but it would mean scraping together the funds to spend up to a year in Seattle. There was brief mention of looking for a transplant program in a location where I had friends/family that I could stay with, but even then I'd lose all of the support I do have here. And I'd be away from Mel forever. I have so much unpacking of this mess to do still. At least I have the weekend to figure out how to save my life.

Weight: 212.0, Symptoms: Fatigue, dizziness, anxiety, depression, shortness of breath.

Tuesday, August 21, 2018

The Path to Full Conversion Cyborg is a Slow One

I'm being admitted tomorrow for my surgery. It's open heart surgery that will result in a mechanical pump attached to my heart. I will have a power cord sticking out of my abdomen and a battery pack to carry around. I'm not sure if the actual surgery will take place tomorrow or Thursday, possibly even Friday, but I'll then be in the ICU for a few days, then in a recovery room at the hospital for a couple of weeks. When I go home I'll need 24/7 supervision for some period of time. A month? Honestly, I don't recall the details. I'm leaving the details in others' hands. At this point I'm just along for the ride.

I'm terrified. Not so much of the surgery, I'll be knocked out for the duration. Not so much afraid of dying; it's a risky surgery, but fairly routine for these people and I'm otherwise young and healthy. Not so much afraid of the pain, though I've been told that will be significant. There are drugs for that. I'm terrified at the prospect of adjusting to life with a heart pump. I'm told that this might get me to the transplant list in as few as 6 months, but if that doesn't happen, the pump is likely to keep me alive for about seven years. Seven years with a power cord sticking out of my abdomen and a battery pack to worry about. That's what terrifies me. And I guess death too.

So, I guess my next post will be after the fact. I don't believe in god or prayer, but if you do you're welcome to send some my way. I was going to end this with 'see you on the other side', but I realize that could be taken rather morbidly. So...afk for now. l8r.

Weight: Dunno, Symptoms: Whatever

Friday, August 17, 2018

Open heart surgeries, 2 for 1 special

I wanted to make a post this weekend about how hard it was to be out of work, but my cardiologist had other ideas.

I was told yesterday that I'm not suitable for a heart transplant because of the pressures in my lung (a new heart would struggle to keep up and likely fail). That doesn't mean I won't every be suitable for a transplant, but some serious intervention is going to be needed to keep me alive and to correct those pressures before that can happen. This is the LVAD heart pump. Ideally, this will be a bridge for me to reach a heart transplant, and this is a very common path for transplant patients. The downside is that this surgery is every bit as, if not more, traumatic that the transplant itself. So, if all goes as planned, I will be out of commission for 3+ months starting Wednesday August 22nd. And if everything goes perfectly, I might be on the transplant list as early as 4-6 months from now.

I'm going to be scrambling for the next few days getting things in order and lining up a support network to help with day-to-day life once I get out of the hospital. This is going to be so hard on Mel and she has put up with so much already. If any of my local friends reading this feel like they have some time to help out, even a little bit, please let me know, or contact Jef or Melinda. You can even comment here if you need a way to get in touch. I feel pathetic asking for help again and again, but this is the hardest thing I've ever done, and now between the LVAD and hopefully the transplant, I get to do it twice. I need all the help I can get.

Weight: 210.0, Symptoms: Mostly fatigue, dizziness, shortness of breath, anxiety

Tuesday, August 14, 2018

Too much to say

First of all, today was the first possible day that my case might have been presented to the board for consideration of being put on the waitlist for a transplant. I haven't heard anything, but I'm not sure that I would right away, regardless of the outcome. All I can do is wait, they may not even get to me for another week or two.

The other big event was really last week. The morning after I wrote my previous post (the one with all of the complaining about how awful I felt) I woke up feeling worse and spent several straight hours vomiting and heaving to the point that I almost passed out, and I was having a real tough time breathing. An ambulance was called and I was taken to OHSU. They treated the nausea, though it took a while for it to help, and they started looking for a heart-failure related cause. There were a couple of indicators that it was heart related, but many indicators that it was not, or that it was unusual in it's presentation. By about 5pm, the nausea was gone and the heart failure team was cautiously optimistic that from their perspective, it wasn't an ongoing heart issue. So, with my symptoms gone and okay from cardiology, I was sent home around 7pm.

By 8pm, I was vomiting and heaving uncontrollably to the point that I was having trouble breathing. Mel ran to the pharmacy and got the anti-nausea meds they prescribed, and they did help, but only marginally. I spent the night on the cough hacking, coughing, puking, and spitting. I did fall asleep for about 90 minutes and woke up to find the symptoms had subsided. Mel stayed home with me, which is a good thing because that respite lasted about 45 minutes. By 10am we were on our way to the Emergency Department at Providence this time, since it was closer and Mel was driving. The trip through the Providence ED was similar only they had the advantage of the previous day's test results to guide them. The managed to alleviate the symptoms by 3pm using the same drugs they had used the day before. This time they decided to keep me for observation overnight. It was the right move as it turns out because by 8pm I was know the rest. They maxed me out on the anti-nausea medication they were willing to try with little improvement. But eventually, around midnight, the symptoms subsided and I was out like a light.

At Providence. Note the tube.
The next day (we're on Friday now) I was up at 7am to get a right heart cath. So I was zoomed down to the cardiology lab where they jammed a sensor on a line into my neck and along a blood vessel to my heart to gauge the pressures in there. I was told that things "weren't worse than expected" which is just what every patient wants to hear, and that they were leaving a "swan" inside of me and sending me off to the ICU so that values could be tested every few hours going forward. Now, if you know me you probably know that the idea of A FUCKING TUBE STICKING OUT OF MY NECK FOR THE NEXT, OH I DON'T KNOW, COUPLE OF DAYS MAYBE IS MY IDEA OF A LIVING NIGHTMARE. Every moment with that thing in I was twitching, shaking, complaining, or at least doing everything I could not to do one or more of those things.

But I digress. It was stuck in me for about 36 hours before they finally took it out, which was it's own kind of hellish experience. Within a few hours I was out of the ICU and into the cardiology ward for one more day of observation. With the fluid load out of me and no more recurring symptoms, I was sent home Sunday afternoon.

So, the conclusion was that I was carrying excess fluid volume, but that it was a relatively small amount that just happened to be collecting in the perfect spot to cause these symptoms. I suppose this means I will have to triple my efforts to restrict how much I drink and what I eat, because that is not an experience I want to repeat again. I'm so grateful for Mel who was there with me every day, and Jef and Andrew who both showed up to help keep me sane. I just want this to be over with. I'm not going to be able to go back to work, but I think I'll deal with that next time.

Weight 209.6, Symptoms: Worsening fatigue, shortness of breath, overall weakness