Skipping heartbeats—and MRIs

Declining care due to cost leads to years of fear.

(Thanks to all who shared kind words about my last post. I really do appreciate your support and patience.)

Today’s interview is with JT, who was treated for an irregular heartbeat with a procedure called catheter ablation when he was 25 years old. This is where the doctor threads a catheter up through a vein, usually in the groin, up to the heart, where they “zap” cells that are causing the arrhythmia. Sometimes this is done while the patient is awake but sedated, the thought of which is enough to give me an irregular heartbeat; in many other cases and in JT’s case, the patient is put under completely.

JT’s story is an example of how switching insurance plans can make a huge difference to a person’s health and their medical care. When he was still on his parents’ plan, he didn’t think twice about getting an MRI, an ultrasound, and the procedure he ultimately needed. A few months later, after turning 26 and having to get on his employer’s plan, he now had a $7500 deductible to meet—meaning he was responsible for huge amounts of what health plans call “cost-sharing.” (It’s where you “share” the cost with your insurer. Isn’t that nice of you?) After seeing what an ultrasound cost him—$450—he declined to get the MRI he needed to see if the procedure had fully worked. He thinks it would have been around $2000, which is what his previous plan paid for the MRI he got before he turned 26.

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This brings us to the other terrible part of JT’s story: The lingering psychological damage he experiences from the procedure. JT told me he developed post-traumatic stress disorder, and experiences flashbacks; I could hear the emotion in his voice while we spoke, and the memory is clearly very difficult for him. He also developed a broader anxiety disorder. He worries a lot about whether he will live to old age. (The success rate of catheter ablations varies according to the type of arrhythmia.)

There is evidence of a link between heart disease and PTSD; between 19 and 38 percent of heart attack survivors develop PTSD, according to an article in Behavorial Sciences. One study found evidence of a reverse of JT’s phenomenon—that people with PTSD were more likely to develop atrial fibrillation, a common type of arrhythmia. Frightening and life-threatening medical events can cause PTSD and other forms of psychological distress. Regardless of the medical mechanism, the fact of JT’s experience remains, the most important of which is his fear. He feels significant distress at the memory of the procedure, even four years later. He is constantly worried about whether his arrhythmia will come back. And he declined an MRI that could have assuaged some of his fears, because of cost.

Luckily, he’s since moved on to a new job with better insurance coverage that allows him to see a therapist regularly. At his old job, he had to “ration” his therapy sessions, which cost $84 each. Now, it’s only $15, and he is doing better. But he still gets tightness in his chest.

Our conversation has been edited and condensed. I’m protecting JT’s identity because of the sensitive nature of what we discussed.

JT: From what we understand, this started out as a possible birth defect, or a condition from birth that didn’t really become significant or noticeable until roughly around 2009. I was getting my wisdom teeth out when I was 18 years old, and just as I was being put under the anesthesia, they suddenly yanked me out of the surgery, saying that something was happening with the anesthesia and my heartbeat was irregular. And as a result they aborted the procedure, they sent me to a checkup, I got an all-clear. Two months later, I got the wisdom teeth [removed], and just generally didn’t really think about it for a while. 

Completely coincidentally to this, I ended up developing some very odd food allergies. The first time I ever had an allergic reaction, I was in the ER about 11pm, and I was supposed to be discharged at 1.30am, but after they administered the steroids to save my life, they were tracking my heart rate and they found the irregularity again. So they ended up holding me until 6.30am, when it finally stabilized. After they sent me in for more tests, we kinda determined that I had a slowly advancing arrhythmia. I don’t believe any outside factors would have caused its advance, though this was around the time I started a journalism job that resulted in a lot of lost sleep due to my hours.

Regardless of that, basically they told me keep an eye on it. Fast forward to August 2016, the first time I noticed something was wrong, I was visiting friends in Pennsylvania and after two beers I revealed some really personal secrets to them—and I’m usually really closed off, so that was a sign that something was wrong. I was running a lot around that time, and I had this thing where I would go out for a half hour jog, and I would come back to my apartment and sit down, and I wouldn’t be able to catch my breath for a half hour. Went to a cardiologist, got a 24 hour Holter monitor, basically as soon as they got the results for the Holter monitor they said, we’re scheduling an MRI for you—they said the earliest we can get you in is 7am Friday morning, and you’re going, it’s non-negotiable. They found out more about the arrhythmia, there was some kind of defect in my heart—to this day they still didn’t adequately fully explain it to me.

Luckily at that time I was 25, so I was still on my parents’ pretty decent health insurance. I remember the moment that I got radicalized on healthcare was seeing my bill, seeing my copay on the surgery that I’ll get to, it was a $44,000 procedure, I paid $500 out of pocket. And that was the realization that if I hadn’t noticed this for three more months, if this hadn’t kicked in for three more months, I would probably be in a very different situation than I am right now. 

Long story short, I had to wear a Holter monitor for a month straight so they could confirm their suspicions, and then as soon as I sent that in for them, they were like yep, your heart’s fucked. And they scheduled heart surgery, essentially they wired a catheter through my groin up into my heart, and used an electrical node that they sent through that wire to essentially scald the inside of my heart, to burn away the cells—whatever was triggering the arrhythmia, they literally scalded it out of my heart. 

By the time I went in for the surgery, my heartbeat’s irregular beats hastened significantly, it went from something like one of every 12-13 beats to one of every three to four beats was irregular. Obviously that’s not really conducive for human life in the long run. I went in for the surgery. It was really fucked up being 25 and filling out a living will. It was really fucked up being the only person under the age of 60 in the heart ward.

I am really thankful for the staff at the hospital, the heart specialists who were able to successfully complete this procedure for me. But in the process I was told there was a one in 100 chance that because my heart was so weak, that the MRI didn’t fully show where in my heart the arrhythmia-causing section was, and they might have to wake me up on the table with a steroid so they can get my heartbeat fast enough to find this place. And I have a history of bad luck in my life, so of course I was the one in 100. I’m sitting on the table, I wake up, I’m restrained. I look down and they briefly say, we’re administering you a steroid. And they basically simulated a stroke that I had to be awake for. I still don’t have full 100 percent functionality of my left arm, it still goes numb sometimes—I apologize for the emotion in my voice, as you can probably tell I ended up developing medical post-traumatic stress disorder.

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The procedure was successful, despite the lingering trauma. They told me I needed 10 days to recover, 10 days of bedrest before going back to work. I went back to work four days after, because I was not able to sustain my current state of living at that time without having a full paycheck. So that was fun.

I went in for followups and followups and followups. I went back to my cardiologist, she was very helpful, an excellent cardiologist, she’s a Syrian refugee. And she’s a really lovely person, but she was telling me I needed to get an ultrasound and then an MRI so we could confirm what was happening. I’ve been told by different doctors in the process of this and afterward, different doctors have given me estimates for the surgery’s long term success from one year, to ten years, to 30 years. So I basically live in limbo. I had an anxiety disorder on top of all of this, which is pretty rough sometimes.

So the problems with healthcare are twofold. The first is that when I turned 26, I got booted off my parents’ health insurance and I had to go on my journalistic outfit’s health plan, which was piss-poor. It was, I believe, a $45 a week premium for a $7500 deductible. It was essentially bankruptcy insurance, given that I had maybe that amount of money in my savings, total, at that time. So I went in for the ultrasound in the summer, requested by my cardiologist, and everything was seemingly hunky-dory at first, she still wanted me to do the MRI for the follow-up. And when we were in the scheduling for the MRI, I got the bill for the ultrasound. The first ultrasound I got, when we were first trying to figure out ‘am I actually dying,’ was I believe $50, maybe $35 because she was a specialist. This bill was $450, which was a week of my pay at the time, actually a little bit more than a week of pay after you take out the health insurance payments, ironically enough. 

So my options were, get this MRI and get this closure, and be out a month’s pay, or try to live with it. And I’m an American, and I was an American in 2017, not in a great position, job did not pay well, did not really treat me well. So I just skipped it. I have lingering nerve damage from the procedure to this day, I get tightness, some body convulsions from time to time, my left arm is often very weak. I have a permanent impact on my heart rate, where whenever I stand up from a sitting position, my heart rate spikes 25 to 35 beats a minute, which is I believe a lot more than that’s supposed to be. It’s made exercise more difficult, it’s made sleeping more difficult. 

Part of the pain of this is just living in this limbo. I was talking to my boyfriend the other night, he was trying to be there for me because this week is actually the fourth anniversary of this procedure, so I didn’t sleep on Monday night. And I told him what I have to live with every day. It was almost as hard to see it on his face as it was on my face. 

And the second half of this healthcare nightmare is that I had developed post-traumatic stress disorder—if I think about it too much, I’m back on the table. I have flashbacks frequently, and I also have the fear of, even if I am fine, I had significant damage done to my heart at the age of 25, so I’m pretty sure I’m not going to live to old age at this point. And Covid and everything has just made that another amplifying factor. I was dealing with the symptoms of post-traumatic stress disorder, the flashbacks, the constant fight-or-flight. 

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I also have, this was also on top of anxiety and depressive disorders I didn’t even know I had, after several meltdowns over the course of 2017 and 2018, nearly ruining my friendships—really erratic behavior. I was finally cajoled by friends who I’m really thankful to have, they truly love me, they finally pushed me into therapy. And I was already losing money at the time, working at the journalistic outfit I worked at, and it was $84 a session. So I basically had to try to ration out therapy as much as I could, to try to stay afloat with that. 

I feel like the damage that was done to my psyche—this is just symptoms of a failing system. I needed this care, I knew I needed this care, I could access it but it would bankrupt me. When faced with the decision between bankruptcy and potentially one day dropping dead, I had to pick the latter, because at least with the latter, you don’t have to worry about the former, you know? When you’re dead, you’re dead. It’s been a nightmare. I’m really lucky that since then I’ve been able to find a much more stable job, with better benefits. But the thing is, even with these benefits, it’s still Stockholm Syndrome even trying to seek healthcare—it instilled this probably lifelong fear in me of, if I get sick, if something happens, my life will be irreparably altered. That’s the world most of us have to live in right now.

Sick Note: Are you still in therapy now, are you still able to see a therapist?

JT: The ironic evil kicker on all of this is after I was able to change jobs and start a new career, and really try to move on from the experiences I had in journalism, which, a small town newspaper with a far-right managing editor, was incredibly difficult to manage. My co-pays are now $15 in person, $5 teletherapy, which is literally $360 a month that I am now saving. And what’s the difference between the role I had there and the role I have now? Not too much. My friends who are still there have struggled—and most of them have left journalism because between all the Trump MAGA bullshit, and all the fucking slow, desiccating death of all the newspapers in the region milked to their last drop by venture capitalists, we all left. 

Sick Note: Is there any other kind of long-term—I know part of the problem is you don’t fully know what your condition is—is there any other kind of long-term maintenance care that you need, like drugs or specialist visits?

JT: Not that I really know—I don’t take any pills. I do have yearly checkups with my cardiologist, especially now that I can actually afford her care. It’s basically keeping an eye on it. I still hear the occasional thumps, if I don’t get enough sleep I am vastly fatigued. I know that these are lifelong impacts from my experience, that I’m just having to live with, and most of the time I am able to accept them and live through them. And sometimes it’s traumatizing. 

Sick Note: Is there a possibility that now you have insurance you can get the MRI that you missed, or is it too late now?

JT: I don’t know, I haven’t, out of a lingering continuing fear, even though I have decent healthcare now, I didn’t broach the subject last time I got a checkup. Most of my strategy now is walking three or four miles a day, watching my diet, trying and failing to get sleep. I am much  more aware of my own health and my own mortality. I’m taking the steps I can on my own—on paper, I seem to be a perfectly fine, functioning individual. And once, twice a month, once every other week, I get tension in my chest so tight that more than once I’ve gone to the ER thinking I’m having a heart attack.