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.

At OHSU.
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 vomiting...you 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.

Home.
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

Tuesday, August 7, 2018

You Can Skip This One

I normally don't write these when I'm feeling particularly poorly, so excuse me if this one is more negative than usual.

Before I get to all of that, I met with the pharmacist and the social worker yesterday. The pharmacist really had very little to say, which is fine. The meeting with the social worker went on for almost 2 hours. She has me feeling more optimistic about my financial situation, though it sounds like there will have ti be more of the fundraising (begging for money). At least she knows of corporate and charitable funds that may help, as well as taking point on getting benefits and helping me with insurance when I can't work. And that brings me to the biggest news:

I could be waitlisted as early as next week.

A more likely timeline would put it a couple of weeks out, but either way it's sooner than I had expected. It's terrifying, but it's great news. What's not so great is that I'll have to stop working as soon as it happens, which means there is a very good chance I won't finish the term. It will be cutting things close anyway. That's really disappointing, I feel like I'm letting a lot of people down.

The other bit of good news that came from my meeting with her was that I'll be able to see the dogs while I'm in the hospital. That's a huge deal.

My Wednesday appointments have been moved, so not much else is happening this week. I have iron infusions this weekend, and a ton of grading to do.

Now I'm going to complain.

I feel awful. I can't get through a 2.5 hour lecture without chest pain and nausea, and I have to do it twice on Tuesdays and Thursdays. I'm teaching 2 classes when I'm used to teaching 4 and it feels like the hardest thing I've ever done. I feel like someone has been kicking me in the chest for the last 3 hours. My head is swimming and my body aches. I am fatigued to the point of pain. I've had the simplest things trigger waves of pain and nausea; tying my shoes, sweeping the floor, getting out of the car, walking for more than a minute or two. It's not like this every day, but on the days I work it can be brutal. Today has been one of the worst.

The things that are keeping me going are the dogs, my friends, and escapism. My friends show up. Mel is an angel, I wouldn't get through this without her. Every time I've asked for help, someone steps up. Jef and Andrew, if you're reading this crap, I hope you know that you've saved my life.

Okay, that's enough of that.

Weight: 214.6, Symptoms: All of them, bad.

Friday, August 3, 2018

Still worth it

Mel waiting with me for the surgeon
Yesterday I met a couple of surgeons and had some labs done. Today I met with the nutritionist, had an ultrasound, and had some labs done.

The meeting with the surgeons made a lot of very scary things very real. They came off as competent, confident, and optimistic, but they also took the time to describe in detail what a transplant would be like. The thought of waking up a day or more after it's over with tubes coming out of my chest is extremely unsettling. Mel came with me and I don't think it was any easier for her to hear than it was for me.

Aggie at her first training session,
right after peeing on the floor.
The meeting with the nutritionist was only slightly less upsetting, as she took the time to list every single food that I would never be able to eat again after the surgery. We went over how I should be eating leading up to the surgery which was helpful and less disturbing.

Everyone has continued to insist that I appear to be a good candidate for a transplant, which is still the best option...as it is probably the only option. One thing that has started to weigh on me is that I will be in the hospital and away from the dogs for several weeks. That's a bummer. I've started taking Aggie to a trainer with the hope that she will learn enough that I'll be able to walk her and handle all of her anxious energy as soon as possible during my recovery.

Next week I will take care of most of the rest of the evaluation and I'm still hoping to hear something about being waitlisted by the end of the month.

Weight: 213.4, Symptoms: a little chest pain, a lot of fatigue, shortness of breath, more than typical light-headedness

Tuesday, July 24, 2018

Here we go...

OHSU does not mess around.

I think I've spoken to one or more of the transplant coordinators or one of their schedulers every day for a while now, and that's probably going to continue. I've scheduled a slew of cardiology visits, device checks, meetings with the transplant surgeon, pharmacist, social worker, nutritionist, and palliative care specialist. I had some labs and a chest x-ray yesterday. I have a two hour patient class scheduled and I have to get checked out by a dentist. Again, I have to be checked out by a dentist as part of my heart transplant evaluation.

With all of this going on, I'm going to have to cut back on work in a week or two. I've also informed my school that I won't be able to teach after this term. That's going to be real hard, but once I'm on the transplant list, I'll absolutely have to stop working. I guess that just means we're getting closer, and that's good news, but it's still tough.

I do still worry about whether I'll get approved for a transplant, though everyone has gone out of their way to tell me what a good candidate I am. I'm worried about money, my relationship, my dogs, and everything else that has been getting more difficult recently. As it turns out, this is a fairly stressful ordeal. I do not recommend it.

I should have a lot more to say over the next few weeks, I just wanted to make a quick update here.

Weight: 211.2, Symptoms: So much fatigue, some shortness of breath, weakness, light-headedness

Friday, July 13, 2018

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


Saturday, June 23, 2018

That Time I Walked Down a Hill and Back Up Again

I had my regular biweekly visit to the cardiologist this past Monday (June 18th). My recent increase in symptoms seems to correlate to "high volume load", or increased fluid retention. This is really the source of most of my symptoms; heart failure describes scenario where the heart is not pumping effectively and so fluid can get backed up in the system. A lot of people get swollen ankles but I tend to distribute the extra load everywhere so that it's hard to tell, except by monitoring sudden increases in weight and, of course, changes in my symptoms (which is why I log both at the end of my posts). At any rate, it warranted another medication change which hasn't had an immediate effect. I had been concerned that I might have to be admitted, right up until the end of the visit. I honestly don't know if I'd rather just get on with surgery or a procedure that will get me on a waitlist for a heart quicker, or delay things as long as possible. I'd still like to be able to work through December; I feel really insecure about what my financial situation will be once I can't work for...3 months? 6 months? A year?

I know I worry too much and it's probably not good for me. I did get a chance to get out of town for a little bit this week and visit with friends. Aggie has gotten pretty good about waiting for me to catch my breath when we're walking and we managed to take a short walk down to the stream while we were there. I took a million pictures, and they all came out like this. It's tough coming to grips with the idea that a hundred yards on a hilly trail is enough to wipe me out for the day.

My July 12th visit to OHSU is the next big step on the path, so I'll focus on that date and try not to worry about the in-between.

Weight: 213.6, Symptoms: Shortness of Breath, Chest Pain, Mild Nausea, Light-Headedness, Fatigue, Fatigue, Fatigue