Heart failure: Decline and ER

I promised to use this blog to provide updates on my health — specifically, the ongoing testing and treatment for my congestive heart failure. I expect to have some new information soon, but in the meantime, I want to write a summary of how I got here.

I can’t point to a specific point at which my troubles began, but over the course of 2021, I gradually began to notice some ill effects. Mostly, I was losing stamina and becoming short of breath more often. I chalked this up to my obesity and advancing age, but that didn’t really explain what was happening. My weight wasn’t changing significantly, and I wasn’t aging at an accelerating rate, but I found myself getting tired more easily and having trouble with physical exertion because of shortness of breath. This wasn’t happening all the time, but Bob and Ben can confirm that when I tried to go on long walks with them, I would have to stop and rest frequently, and I still couldn’t keep it up for very long.

It was depressing. I felt like I was getting old prematurely. Things that had been a normal part of my life became more and more difficult. Doing laundry, for example. My apartment is on the third floor, and the laundry room is on the first. Carrying a basket of laundry up and down those stairs hadn’t been a big deal a couple of years ago, but now it was becoming an exhausting ordeal. Even climbing the stairs without a burden was tiring. During the pandemic, I had become more reclusive, going out rarely and relying on grocery and takeout food delivery. At first, that had been more of a convenience; now it was a necessity, because leaving my apartment was a challenge that I was reluctant to face.

Around the beginning of December 2021, the deterioration seemed to accelerate. My weight had been slowly decreasing in November — not a lot, but definitely moving in the right direction. In December, it started increasing, and at a disturbing rate. Between late November and late December I gained 15 pounds. I couldn’t figure out why. I hadn’t gone on an eating binge; in fact, I had cut some things our of my diet to reduce my caloric intake. It didn’t make sense.

Since being diagnosed with deep vein thrombosis (basically, the formation of blood clots) in 2019, I had experienced some edema (swelling due to fluid retention) in my lower legs and feet. This tended to come and go over time. Sometimes there would be no noticeable swelling at all. But in late 2021, the swelling was as bad as it had ever been. And I noticed that my abdomen seemed to be bloating as well. The shortness of breath and fatigue got worse. On recent attempts at long walks, I had been able to walk or speak, but not both at once. I simply couldn’t get enough air for that. And I was tired all the time now, with no energy for anything but basic activities.

I noticed that breathing was more difficult in some positions than in others. It was easiest when I was sitting or standing upright, and most difficult when I was lying down. This made sleeping a challenge. I have an ordinary flat bed, not the kind that can raise the head so that you’re sitting rather than lying. (If I owned a recliner, I would have tried sleeping in it.) I had to carefully control my breathing (in through the nose, out through the mouth) and focus on relaxing in order to fall asleep. And I still wasn’t sleeping very much or very well.

I decided to defy my limitations in order to go to a theater and see Spider-Man: No Way Home. I had been hearing very good things about it, and I was worried that the longer I waited, the greater the chance that I would encounter spoilers. A day or two in advance, I reserved a seat at a showing on Sunday, December 19. But on the morning of the showing, my left foot was so swollen that I didn’t think it would fit into a shoe. I requested a refund for the ticket, and I didn’t go.

By this point, just getting out of my chair and walking across my apartment would cause me to be out of breath. On those occasions when I couldn’t avoid going up or down the stairs, I would have to stop, rest, and catch my breath several times en route. It felt like I was slowly dying. When I turned 62 years old on December 20, I felt 30 or 40 years older than that.

It occurred to me that I might just be sick with an infectious disease. Shortness of breath and fatigue are among the symptoms of COVID-19 and flu. If that was the cause, then eventually I would recover from the disease and get back to normal. I had never thought I would actually hope I had COVID, but that’s how desperate I was. I called my primary medical practice and scheduled a COVID test.

The test took place on December 22. The physican assistant who administered it told me that I would have the results the next day. But I didn’t. When I called the lab company to ask, I was told that it could actually take up to three days. Of course, the third day after the test was Christmas, and it was in the middle of a long holiday weekend. I had planned to visit Mom in Rock Hill for Christmas, but that didn’t seem possible now. I canceled the trip and, for the first time in my life, spent Christmas alone. (Marie had Christmas dinner with friends, and she was kind enough to bring me several plastic containers of food, so I did have Christmas dinner.)

I called again on December 28, the first normal workday after the holiday, and was told that the lab company had no record of my ever having taken the test. Apparently, they had lost it. I would have to retested. I was stunned. But before I could schedule another test, I suddenly received an e-mail from the lab company with the results of the test. They didn’t say how this was possible when they had told me a day before that they couldn’t find it.

I read the results. I was negative for COVID, for both of this year’s strains of flu, and for respiratory syncytial virus. Good news, right? Not at all. In fact, I was frightened by the news. It meant that my symptoms were not going to go away on their own, because I wasn’t sick with a virus. Something else was causing my shortness of breath and fatigue. And at this point, my lung capacity was barely enough to keep me alive. If I did catch something that compromised it further, like COVID or flu, it would probably kill me.

I realized that I had run out of options. I had to go to the hospital. That evening, the night of December 29, I drove myself to WakeMed Cary and parked outside the entrance to the emergency department. Unfortunately, I had to park on the far side of the parking lot. It wasn’t a large parking lot, and had I been in good health, I could have walked to the entrance in a minute or two. But I wasn’t in good health, and I also had some things to carry. Knowing that I would probably be admitted, I had packed a gym bag with a few necessities. And I had the messenger bag that goes everywhere with me (basically my version of a purse). So I slung those bags on my person and started the trek to the entrance.

In my memory, that walk across the parking lot is the emotional low point. It seemed to take forever. I couldn’t move very fast, and I kept having to stop and catch my breath. Would I even make it to the door? Or would I collapse and die in the parking lot? That sounds melodramatic now, even to me. But it’s what was going through my head at the time.

Finally, I reached the entrance, approached the front desk, and explained (stopping frequently for breath) why I was there. Almost immediately, I was helped into a wheelchair and rolled into a sort of anteroom where I answered a bunch of questions from a nurse. Then a doctor checked my vital signs and reviewed what I had reported about my symptoms. On the basis of my difficulty breathing and the recent rapid weight gain, I was taken into a room in the emergency department for treatment.

In my next post, I’ll try to summarize my experience in the hospital and the events that followed.

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