A new start

 This year has been hell for people with chronic illnesses that are not COVID. Many of my doctors (specialists) have been totally MIA. They either don’t followup at all or meet with us for 5 minutes for a useless zoom call. 

Last fall I was out running in NH and chest pain that I’d had for years from my pacemaker began worsening intensely. I felt like I was having a heart attack. Since I hadn’t had any followup on my heart or pacemaker in months due to COVID, and the pain was so severe, I went to an ER. I expected them to just do an ECG but instead they did a COVID test, ultrasound, found a high d dimer, told me I was having a pulmonary embolism, rushed me into an angiogram, flipped out over my pacemaker rate, and then tried to pressure me into leaving by ambulance to Boston. I was terrified. I was alone. They were misdiagnosing my paced rhythm as an arrhythmia. I asked them repeatedly please call my cardiology office. They did but nobody responded……..for 11 hours. The ER also hung up on my relatives and would not let them in.

After a long long battle I left the ER against advice. I intended to followup with my own cardiologist but again couldn’t reach him or make a phone appointment the following week. I had to call “patient relations” to get a cardiologist to call me back. My cardiologist that I’d been going to for years. 

Over the coming months we arranged a surgery to replace a pacemaker lead that he suspected was causing the pain. My pacemaker had caused severe problems from day one. I’ve wanted it turned off many times even though I’m 100% paced. This was my last resort. My last try. 

My doctor kept changing the surgery plan. Right up until the morning of surgery. He told me 5 minutes ahead of time that he would try to remove my lead instead of putting a new one in beside it. I had not told my family I was doing this higher risk procedure. I agreed though. Anything to stop the pain. I didn’t doubt his intelligence or abilities as a surgeon. I would stay awake so my autonomic condition wouldn’t be of danger under anesthesia. 

The lead removal went well but then he struggled to get the new lead to conduct in the intended location and placed it in a new place I hadn’t heard of: the fasicular. I didn’t really care. The snapping pain I’d had for 6 years was gone. 

Later that night at my overnight in the hospital I tried running in place. I could see my heart rate was not responsive. I had picked a pacemaker that was known for being the best for athletes. I knew I needed setting adjustments. When the device rep and a new doctor came the next morning I begged them to allow me to run knowing I would never get back into the office to adjust it. 

“Let the lead heal, you can come back in in a few weeks.”

Ugh, okay. Why do I trust anyone? I know better. 

Months went by. I could not get an appointment (as I expected). I waited and weakened. Severely. I’m a daily runner and could not run at all for months. I had no followup on the surgery in cardiology at all. I then found out through incidental blood work by a different provider that I had become inexplicably and suddenly anemic post surgery and needed a blood transfusion. I am very against transfusions but my hemoglobin was dangerously low so I agreed or I’d be in the hospital again. 

When I finally returned to cardiology, months had gone by. I was supposed to meet with the rep first for 30 minutes and then my cardiologist. 25 minutes into my 30 minute appointment slot I was finally called in by two nurses only to tell me they cannot change settings and my rep is not there. Then they tell me my cardiologist is meeting me on zoom. I’ve driven hours in ice to his office to sit unvaccinated and put myself at risk in a high COVID area for absolutely nothing. I complained, so he came in and rushed through some setting changes. He asked me when I wanted to followup and of course when I went outside to make the appointment they wouldn’t make one again except by zoom until I had a standoff to ask for a supervisor. What the hell? Why are non COVID patients having to fight to meet with our providers a year into COVID when the providers are all vaccinated? How long are they going to delay our healthcare? In how many ways are we going to be put at risk and for how long?

Upon leaving the office I wasn’t feeling well. I was getting very dizzy from minor movement. Checked my ECG with a kardia. An FDA approved ECG device. I was being paced to my maximum (185 bpm) nearly every time I moved. I contacted the office several times. Told them I’m dizzy, the settings are too strong, etc. Passed out quite a few times with minor injuries. I needed to meet with the rep who I was supposed to meet with in the first place months earlier. After weeks of no appointment being scheduled AGAIN for an urgent situation/setting malfunction, I had to call patient relations once again for help just to set up an appointment. This was absolutely insane. 

In non COVID times this same paced tachycardia malfunction occurred. It was fixed within hours. During COVID times they left a patient with a paced heart rate of 185 for 21 days. When I finally got back in, my doctor acted like I was bothering him. He had no time to fix it (this was caused by settings he changed) so I dealt solely with a rep which was fine with me. We tried running stairs, a few yards outside and something was just off with my sensor and its reaction to settings so he called tech services. They systematically went through all my parameters and determined that arm movement was triggering my breathing sensor and in order to fix it they should ask the doctor to sew it in more securely. 

The rep gets my doctor and tells him. 

Instantly, before hearing any rationale, he insists it’s not that. He tells me my demands are unreasonable, deal with it, I should have researched, make an appointment if I need to speak with him, and he doesn’t even need to treat patients like me. 

Wow. What exactly should I have researched? Isn’t that his job? I actually tried to call the company and research. The reps won’t talk to us. What is unreasonable about not wanting to black out from an instant heart rate of 185 while walking across your parking lot? He put no effort, absolutely no effort into EVER setting up this device for running. He knew I was a competitive runner highly reliant on exercise as a way to control symptoms and stay functional and that I’m 100% paced. My settings are important and can’t be done flippantly and left dangerously erratic. Running is not a hobby. It keeps me out of the hospital. I was shocked. He’s never been a friendly person. To be frank neither am I, but this was out of line and totally negligent office behavior. If he doesn’t have time to deal with followup on his own patients, his surgeries and his pacemakers than add a provider or send patients to someone who can.

The only thing I could get out before he stormed out of the room was that it was not unreasonable to expect a pacemaker to act somewhat like a normal heart and that I agreed to a huge surgery so I’d be able to keep running. I can’t function with these settings. He told me he fixed the pain, I’m unfair to him, and left the room. 

I was now left with a rep who was told by his company he can’t fix this via settings and a doctor who won’t add a stitch to the device to fix what the company felt was the problem. The rep tried to damper the response and told me before I left to be careful with arm movement. I was nearly in tears. I’m a violinist too. This is my bow arm! 

During the several weeks in which my cardiology office was not responding to the malfunction I was calling other places. I knew if I didn’t come up with a way to fix it I’d end up in an ER again. I called Mass General. Mass General has been swamped with COVID compared to the hospital/state I’ve been going to which has had the least cases nationwide. You’d expect delays in Boston to be far far worse. Especially for new patients. Nope. They were appalled that any office had left me at this heart rate (and that no office had ever adjusted settings on a treadmill in 7 years) and wanted me to come there right away. At the time I thought there was a misunderstanding with my cardiology office and was waiting to give them a chance to fix it…….but there wasn’t a misunderstanding. I just have a doctor that doesn’t really care about his patients or see them as human beings. If we aren’t in line for a surgery we are just a waste of his time. 

Mass General got me into their cardiac performance program within a week. I will do a stress test with a rep and then meet with a sports cardiologist, one of the top in the nation, and then an electrophysiologist. I am cautiously hopeful they can help. I have never run on a treadmill with the purpose of watching and optimizing my pacemaker settings in 7 years of being a 100% paced runner. Mass General arranged this on their own without being asked to……..at the first visit…….not 7 years in. 

I am very very sad at the state of healthcare in my area. I’m saddened by how patients are treated. If it happens to me, it happens to countless others. Many people battling chronic illnesses do not have the drive and mental toughness to keep fighting. I have wanted to give up. Many many many times. My cardiologist has no idea how tough it is to live in my body or keep control of my failing autonomic functions. Especially with no help/specialist due to retirement. Patients with complex or incurable illnesses feel like a burden constantly to everyone due to an illness we cannot control and would not wish on our worst enemies. To have doctors outright call us a burden that they don’t have time to treat is terrible and inexcusable.