I’m sorry about our luck, as there will be no fun or gratuitous head-smashing here today. This is about my week and feeling like a living dead girl at the end of it (hi Rob Zombie!). I may have wanted to smash some skulls, but not for the right reasons. Right reasons; the person is formerly dead, rotting, reanimated and craving my very fucked up internal squishy bits. Can I take comfort in this? No matter how fucked up I am, zombies don’t discriminate. I’m still 50% edible, save for one very rare suborder of zombie: the vegan zombie.
One thing I take issue with is dialysis three times a week. I understand the frequency is determined by how well my kidneys happen to be working at the time. Still, I can’t help but feel that, by hour two, it’s a huge waste of time. If my gut weren’t such a volatile place, I’d totally be doing peritoneal dialysis AT HOME. Thinking about how averse I am to “wasting” nine hours, I realize how worthless I am. It’s not like I’m working a 60-hour work week on top of this. I do absolutely nothing. If I got paid to go to dialysis, that might help my sense of worth slightly. How about it? 😉 I read a quote by an alleged dialysis patient that said somethin’ like “we’re grateful for the things that keep us alive.” I see this stuff – about people who are in the same position as me, but do they complain about it? No. They’re happy to be alive. I really wish I could figure out the trick to that. Maybe, just maybe, they aren’t being honest with themselves or their audience.
Since I’m a transplant puppet, I have to play their (the doctors) game exactly the way they want or it’s possible I’ll miss out on my “perfect” match (waiting for the right person to die doesn’t exactly brighten my day) due to being ineligible because I decided to skip tests that were ordered. My cardiologist is extremely hyper. Maybe that’s just him, or maybe he’s more accustomed to dealing with people who are forty years older than me. That was made obvious during my time in ICU. I had several cardiologists and none of them had any idea of what the fuck to do with me because drugs that they’d use on someone with typical heart failure made me crash. On the flipside, heart crack to help increase my cardiac output made my arrhythmia worse.
Wednesday was my follow-up with Dr. Cardio. I had lab work done first, then an echo and ekg. I wasn’t feeling very chatty. For him, I’m sure it felt like he was twisting my arm to get me to talk. My Mom sat there patiently for about ten minutes before she chimed in and told him that I’ve been having trouble sleeping because I like to de-sat right after falling asleep, then wake up gasping for air and have had intermittent fevers over 101. I’ve also got these things called splinter hemorrhages on my fingernails that, according to Laura, can indicate endocarditis or possibly vasculitis. I’ve never had a doctor look at my nails.
I didn’t talk about any of it. He’s the doctors, right? He can figure this shit out, although this has rarely been the case with most of the others. It hasn’t always been this way – I was pretty good about making sure I mentioned everything I thought was relevant. I’m sure doctor burnout happens to everyone and in this case, it’s a very good thing I brought someone with me!
There was no change on echo and I was sent back to the lab for blood cultures that required me to sit around for another hour and a half. He scheduled me for a transesophageal echo. Having a transducer smashed into your ribs isn’t uncomfortable enough. How about we put it down your throat now? Cool? Cool. This was to get a better view of my valves to make sure there weren’t any abnormalities. He also offered to set me up with sleep medicine to help with my nocturnal dyspnea. I’ve already got a sleep dude but getting in to see him can take a while. It took three months to get my results after my last sleep study. I don’t know if I can wait that long, so I asked Dr. Cardio to get in touch with him to see if I can get priority. Fat chance, I’m sure.
I did ask him about starting PT because my gams are seriously atrophied, to which he replied “I don’t want you doing anything that isn’t absolutely necessary until this is under control. That includes PT. Pretend you’re 100 years old.” Fuck.
My neuro appointment got pushed to next week so I could have the TEE done, which took about four hours to recover from sedation. Just in time for dialysis. The preliminary report was that everything looks okay other than regurgitation, no abscesses, calcifications or other weird shit. My guess is the fever has something to do with my guts. When isn’t that the case? After two days, none of my cultures have started to grow. I’ll take that as a win.
Next week will be even suckier than this week, with three follow-ups scheduled. The things we do to survive and for what, exactly? If I make it to the other side and have something that almost resembles health, I’ll still be a floater without direction or purpose. I guess the trick is to not think about that (good luck) and focus on today.