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