Day after Christmas, known as Boxing Day to folks in the British Commonwealth, I called my cardiologist’s office to report some issues I’d had during the previous week.

1. After riding a stationary bike for 20-30 minutes last Saturday the 21st, I started feeling like I was going to have a heart attack.
2. That I am perpetually fatigued. Simple things like doing the dishes, cooking, and carrying in a couple bags of groceries are leaving me exhausted.

So the receptionist dutifully notes down my issues. “We’ll have our triage person get back to you.” An hour or so later, I get a call from someone in scheduling. “Your doctor says you need to go to the hospital.” Of course, I’m thinking this is complete and utter bullshit, because that day I was feeling just fine. Same for the day before. But we (GF and I) talked ourselves into going to the ER anyway.

They ran a bunch of tests on me. “Your heartrate is normal. Blood pressure is worryingly low.” I didn’t think to mention that I’d popped some xanax before heading to the ER; that might have explained the low BP. I did a bunch of sleeping. At some point, my girlfriend wakes me up. “They want to hold you for observation and do a bunch of tests on you, including a CT scan on your brain.” And I’m like what the actual fuck? Brain? Whut?

The reasoning is that maybe my low blood pressure was due to a brain tumor. Maybe it is, but realize, I have a heart condition that is basically terminal. The last thing I care about is whether I have a brain tumor to go along with it. Metaphorically, suppose I was eating a slice of birthday cake made from rat faeces laden with hanta virus. Am I actually going to give a shit that the chef used some plutonium in the icing? Nope.

I’m a huge believer in science, though I think the obsession with medical testing is harmful to science. Hell, this is pretty much true of all data. We’ve got data. We have so much data that it’s coming out of our ears and assholes. What we don’t have enough of is logic, intuition, and critical thinking.

Worth mentioning that while I was in the ER, I got myself a referral to hospice, so I’m on hospice now. Hopefully I can live out the next months, years, weeks, days, or whatever I have left in some degree of comfort without playing this revolving door hospital game.

I’ll start at the end, because that’s the most important part. Later this month, I’m obtaining medical aid in dying AKA death with dignity. Barring unforeseen circumstances or unexpected changes, my last day on earth will be June 13th, 2025. Realize that I’m just over 46 years old. So how the hell did we get here? I’ve written part of the story in dribs and drabs over the years, so I may as well write up the whole thing.

Late on the night of November 14th, 2021, I went to the local emergency room. I had a blood pressure of 55/37 and a pulse of 220. I had a heart attack at some point. I’m not quite sure when that happened. They admitted me for a hospital stay.

One of the first things they did was an arteriogram, and they found blockage in one artery. They thought they would be able to treat it with stent placement during the procedure, but it was too severe for that. They had a surgeon consult with me about doing an open heart procedure. It would be a single bypass. If I refused the procedure, my life expectancy would be about 4 and a half years. So it seemed reasonable to go ahead with it.

On Thursday, I went in for surgery. It was miserable, but I survived it. By Monday afternoon, I had recovered sufficiently to be released from the hospital, so I went home and finished the recovery process there.

During my hospital stay, I was also diagnosed with heart failure with reduced ejection fraction. My ejection fraction was between 25 and 30 percent. They told me that they would probably want to place an ICD (implantable cardioverter defibrillator) if my ejection fraction didn’t improve. It never really did. The best it got was 30 to 35 percent. So in February of 2023 I went in for an out patient stay to have a subcutaneous implantable cardioverter defibrillator (SICD) placed.

Fastforward a few months. I’m sitting in my recliner, eating some plantain chips, when all of a sudden, I got shocked. I jumped and screamed. Still, it only happened once, and I’m thinking: this is no big deal. A few weeks later, in August, I received another shock. It only happened once, so again, I’m like “no big deal.”

On September 11th, the situation changed. I felt “off” all evening. I was shocked once, and I kept feeling like another one was coming. So I went to the ER. My ICD device fired while I was on the ambulance and when I was being wheeled into the ER. They kept me for a couple days, ran some tests, told me to follow up with cardiology, and sent me home.

A week later, I was back in the ER with the same complaint. I don’t remember whether there were multiple shocks. The same thing happened: they kept me for a couple days to make sure I was stable, ran some tests, sent me home, and told me to follow up with cardiology.

On the first Friday of October, I kept feeling “off”, as though I was going to have a heart episode. The device didn’t fire, but I went to the ER anyway. When I was in the ambulance, they told me that I was in VTac (ventricular tachycardia), and they shocked me. I was shocked several times by hospital staff while they tried to get me stable. This time was a little different. The cardiac electrophysiologist decided that it was time to do a cardiac ablation. They performed that procedure on the following Monday or Tuesday, and I went home in the middle of the week.

Things seemed ok for the next couple of months. Then, on the night of February 1, 2024, I started receiving more shocks from the ICD. I went back to the ER. That night, my ICD shocked me at least seventeen times, and I was also shocked several additional times by paramedics and ER staff. If you’ve ever taken a physical beating that has left you sore for days, you know exactly what I went through that night. I took a beating or two of that sort when I was younger, and that’s exactly how being shocked more than twenty times felt. Every movement of my upper body hurt for the next several days, including just shifting around in bed. The day after I landed in the emergency room, they sent me to a much larger university hospital in Portland. That hospital stabilized me, switched out my ICD for another device, and sent me home a couple days later.

I spent the next few months in a state of total mental paralysis that I suspect was some kind of PTSD. I kept feeling like I was going to have heart episodes and waiting for the next shock. The new device they placed when I was in Portland had some pacing functionality, so I’m pretty sure I avoided some shocks. When I saw my cardiologist in the summer of 2024, she told me that the pacing functionality barely succeeded keeping me out of a round of shocks. She and her boss wanted to do another cardiac ablation.

At this point, I started wondering just how much life I had left. I bluntly asked for an estimation of my life expectancy and was told maybe ten years with the ablation and the defibrillator. The point of the ablation was to act as a “band-aid”, to calm the heart and hopefully keep me out of the emergency room and from being shocked repeatedly. I agreed to yet another procedure, and it was done in late August.

Less than a month later, I received multiple shocks from the ICD. I went back to the ER. I was shocked at least nine times that night. They stabilized me, kept me for a couple days, and told me to follow up with cardiology.

So I followed up with cardiology. And I bluntly asked the life expectancy question again. “Obviously, the cardiac ablation did not work. How much life would you estimate that I have left?” “Maybe two years, but I honestly don’t know.” At that point, I asked them to disable the defibrillator. I was tired of getting multiple shocks and not knowing when they would come, tired of landing in the ER. Realize that in one year, I had ended up in the ER and hospital 5 times for the exact same problem. My prognosis without the defibrillator was a few months.

But at first, I wasn’t going to let it stop me. In December, I started a cardiac exercise program. Basically, they monitored my heart while I exercised. That went well for a few days. Then one day, my blood pressure bottomed out and my heart rate spiked during a session. During the next session, I felt “off” afterward. A couple days before Christmas, I was riding my stationary bike at home for a while. At some point, I started feeling like I was about to have a VTac episode, so I stopped. I spent the next few hours in agony, until I was finally able to sleep.

It gets worse. At this point, even doing trivial tasks became a burden. I’d start having heart palpitations and become winded while bringing in a couple bags of groceries or doing the dishes. This part of the story is told more completely in an older post: Reason 666 Why US Health Care Is So Fucked: The Testing Obsession!.

I’m basically terminally ill. I got a referral to hospice, and I’ve been on that program for several months. I still have heart episodes. I can back them off with morphein, which I use very judiciously. But I expect that at any time, I could have an episode strong enough to land me back in the ER. At that point, I’d most likely just die naturally.

I am afraid to so much as go for a walk, because the last thing I want is to die in the middle of the sidewalk, or worse, be discovered by paramedics and accidentally receive medical intervention.

A while ago, I started investigating Oregon’s Death with Dignity program. Not because I want to die. I don’t. But I’d rather die in a controlled manner than die in pain and be found unresponsive in the middle of my floor by my girlfriend. I want to live, but I’m strongly opposed to my few remaining possibilities for medical treatment (I’ll get to that in a moment). No, I am not a burden to my family. They’re glad to care for me. In fact, it is going to be bad for them when I’m gone. Especially in this hellworld that the US has become under a second Trump Presidency with a stacked Congress and Supreme Court, as well as a crazed billionaire and his wrecking crew actively destroying the government. I’m sad to leave them, and I worry about how they’ll make it without me. I’m angry that I have severe heart failure that started when I was in my early forties. I’m too young for this, but here we are, and here is what I’ve chosen.

So let’s talk about my scant options for treatment. I could have my defibrillator reactivated, and maybe have a couple more years. If I do that, I expect many more ER visits and more painful and unpredictable shocks. I already said no to that. Another slim possibility is a heart transplant. I am not interested. I’ve explained my reasons more fully to people who are close to me, but they basically boil down to the fact that an organ transplant requires a full commitment to the process, and I’m not willing to make that commitment.

A few months ago, a friend sent me a link to a university doing clinical trials using stem cells to repair the heart. It seemed really promising. Unfortunately, they are in Germany, and they only accept German residents. So that wasn’t an option.

So anyway here I am, planning for my upcoming death. And I don’t have enough nice things to say about this process. At every point, the choice is entirely mine. From the beginning of the process all the way until I consume the cocktail of meds that will end my life, I can decide not to proceed, or I can decide to wait to fill the prescription, or whatever. This is my choice all the way.

As it was put to me: “Chris, you’re dying of heart disease. You can choose to just let it naturally run its course. Or you can choose a controlled exit. Either way, if you choose medical aid or you choose to let it run its course, you’re dying.”

chris

2024-12-31 06:31:42

Reason 666 Why US Health Care Is So Fucked: The Testing Obsession!

Day after Christmas, known as Boxing Day to folks in the British Commonwealth, I called my cardiologist’s office to report some issues I’d had during the previous week.

1. After riding a stationary bike for 20-30 minutes last Saturday the 21st, I started feeling like I was going to have a heart attack.
2. That I am perpetually fatigued. Simple things like doing the dishes, cooking, and carrying in a couple bags of groceries are leaving me exhausted.

So the receptionist dutifully notes down my issues. “We’ll have our triage person get back to you.” An hour or so later, I get a call from someone in scheduling. “Your doctor says you need to go to the hospital.” Of course, I’m thinking this is complete and utter bullshit, because that day I was feeling just fine. Same for the day before. But we (GF and I) talked ourselves into going to the ER anyway.

They ran a bunch of tests on me. “Your heartrate is normal. Blood pressure is worryingly low.” I didn’t think to mention that I’d popped some xanax before heading to the ER; that might have explained the low BP. I did a bunch of sleeping. At some point, my girlfriend wakes me up. “They want to hold you for observation and do a bunch of tests on you, including a CT scan on your brain.” And I’m like what the actual fuck? Brain? Whut?

The reasoning is that maybe my low blood pressure was due to a brain tumor. Maybe it is, but realize, I have a heart condition that is basically terminal. The last thing I care about is whether I have a brain tumor to go along with it. Metaphorically, suppose I was eating a slice of birthday cake made from rat faeces laden with hanta virus. Am I actually going to give a shit that the chef used some plutonium in the icing? Nope.

I’m a huge believer in science, though I think the obsession with medical testing is harmful to science. Hell, this is pretty much true of all data. We’ve got data. We have so much data that it’s coming out of our ears and assholes. What we don’t have enough of is logic, intuition, and critical thinking.

Worth mentioning that while I was in the ER, I got myself a referral to hospice, so I’m on hospice now. Hopefully I can live out the next months, years, weeks, days, or whatever I have left in some degree of comfort without playing this revolving door hospital game.