I was writing this at the bottom of the previous post but thought it was different enough for a separate post.
I definitely feel that my health and quality of life is a lot worse since the heart bypass surgery last November. Right after surgery, I thought that I could get through the 8-12 week recovery period, and pick up life where I left off, even with the pending kidney transplant. Well, in mid-March with the COVID-19 pandemic, all that has changed forever.
Personally, I think my problem started with my experiment with peritoneal dialysis. In hindsight, I made the wrong choice back in April of last year. I decided to go with PD instead of getting a fistula and continuing with in-center hemodialysis. I don’t think it affected the need for bypass surgery since that was caused by years of bad eating and no exercise. However, since PD failed to work for the last two months of treatment, my blood really wasn’t getting cleaned. The blood toxicity probably caused some other health issues or at least made existing problems much worse. My urine output went from close to 2 liters a day down to zero, which is causing havoc with my fluid balance now. I also feel that my energy levels are a lot lower than before, plus the numbness in my feet due to peripheral neuropathy is a lot more intense now too.
At first, I thought working from home for a few weeks is cool, since I was just getting used to driving 40 miles to and from work again. However, as the pandemic got worse, and even healthy co-workers started staying at home, I felt like I was back in recovery: stuck at home with nowhere to go. Before, it was because I was physically unable to move around. Now, it’s the fear of getting COVID-19 and getting really sick or dying. Unlike heart surgery recovery, where you can feel the physical improvements and there’s an end-date, this COVID-19 mess won’t end unless there is a widely available vaccine. This could be soon or next year or never. I can’t imaging life if we never come up with an effective vaccine and millions of people like me are stuck at home for the rest of their lives.
Right now it’s hard to imaging the future. I go to dialysis three times a week, and sometimes I go to the mall parking lot to charge my electric car. I also go and get take-out lunch a few days a week but the rest of the time, I’m effectively locked up at home. That’s why I went to pick up dim sum this past weekend. It seemed like a low risk opportunity to get out of the house for an hour. Since the local Supercharger is much more available these days with less people driving, I should go out for more aimless drives rather than sit at home.
Sigh. In the end, the near future is dependent on the vaccine and if I can get a live donor kidney transplant from my sister. If the transplant happens, then the need for dialysis goes away (hopefully for many years). However, I still will be high risk due to all the post-transplant medications. If UCLA rejects my sister again, then I have to decide on whether to transfer my time to the Mayo Clinic in Phoenix, or stay as it for the next 5-6 years waiting for a deceased donor kidney. When I first started dialysis, I though it was temporary, and would last only a few weeks or months. When I switched to PD, I thought I was done with hemodialysis and would stay on PD until the transplant happened. Now that I’m back on hemodialysis and with my fistula not working well, I don’t know what to think anymore.
You never want to live in the past, but life was pretty good ~10 years ago. I just turned 40, started a new job, none of these serious health issues were apparent, plus traveling a lot and “dating”” a girl in Beijing. A short 10 years later, it’s all turned to shit.
All this time, I kept wondering what God’s role was in all this. Admittedly, I had stopped going to church when the last one I attended self-imploded. I spend a few years looking for a church, then ending up at the one I’m attending currently four years ago. For the first two years, I was pretty gung-ho. The church is more charismatic on spirituality than my previous churches, and I got all caught up believing that God will cure me miraculously. I think it even affected some of my dialysis decisions. “Why make long term dialysis plans when God’s going to cure me any minute now?!” However, when weeks, months, and years went by with no supernatural signs and wonders, I started to doubt and sleep in on Sundays (skipping church service). I still don’t know what to think about spirituality and healing in my life. I send group texts to my cell group letting them know about hospital appointments and transplant news. In return, they all reply with promises to pray. Together with my parents’ church and my old church in the South Bay, there’s probably a lot of prayer going on. Does that even matter to God? Should it?
This post has become way longer than I originally thought. The pain in my foot seems to have subsided somewhat. Maybe it’s one of those rare cases where the Tylenol does help. It’s past midnight; I’d better try to get some sleep before dialysis or I’m going to pass out on the chair again.
Good night. Hope there is good news from UCLA soon.