Throughout the recovery period after heart surgery, I was struggling with anxiety and even panic attacks. The worst case was when I had to get out of the house, even though it was 11:00 pm at night, raining, and I could not even walk that far. It was an overwhelming sense of impending doom.
Since then, there have been periods of high and low. I think as each new issue arises, I have to do research to find out more info, and knowing more relieves my anxiety. This happened when the UCLA transplant coordinator called me back and left a long message about status, and also when I finally started cardiac rehab, which was required by UCLA. I don’t do well when there are too many unknowns. I start thinking about all the worst cases and start having dreams/nightmares about it.
Right now, I have several unresolved items:
- Medical insurance: Still have not received a call back from my work insurance. I sent them very clear written evidence that they have the wrong information but they’re still rejecting past claims. I’m pretty sure all the claims will be resolved but not looking forward to the amount of extra unnecessary phone calls required.
- Worse health post surgery: It’s hard to compare without objective data but my peripheral neuropathy definitely feels a lot worse than before. I don’t think the numbness and tingling was bothering me 24 hours a day before surgery. Also the loss of remaining kidney function is stressing me out. I have to really watch my fluid intake.
- Insomnia: It’s been a week of no sleep. Sometimes I finally fall asleep around 6:00 am but always need afternoon naps to make up sleep time. I know it’s bad for my recovery but nothing is helping.
- Worsening chest pain: I thought I was getting better but lately, the chest pains from the surgery appears to be getting worse. From the growing keloid on the scar to pain and difficulty breathing when lying down, I seem to be losing ground on recovery.
- Employment: Still haven’t caught up at work. I get email daily about issues that I do not know how to solve. I’m not sure if it’s okay yet. There is a lot of systems and coding skills required and I’m probably can do only 50% of the task. I have staff that can do everything but it’s a new experience managing stuff I don’t completely understand.
Finally, this COVID-19 pandemic has made things much worse. All non-essential medical services are now on hold so hospitals can deal with infected patients. This cardiac rehab program, and therefore my transplant, is on indefinite hold. Even after everything resumes, I have to weigh the risk of taking immunosupressive drugs during a global pandemic. I was hoping for a kidney transplant and an end to dialysis this summer but now I’m back to not knowing. Even now, I’m worried constantly about getting the virus and infecting my parents at home. Since they’re both 78 years old, there is a non-zero chance that if one of us gets COVID-19, it will kill all three of us.