New Here - Need Your Advice, Please
I’m new to this forum and could use some experienced advice. Here’s my story:
I was diagnosed with advanced prostate cancer 5-years ago (stage 4). The cancer had spread to one area outside the prostate – the T8 vertebra. Went through chemo, radiation and surgery as well as 5-years of hormone therapy (Lupron). I’m in remission now and not taking any cancer medications. ;)
The doctors believe that radiation treatment to my T8 vertebra may have caused an electrical problem with my heart. (Or perhaps it was the chemotherapy.)
I was diagnosed with chronotropic incompetence / sick sinus syndrome. My heart rate would not go above 109 before my pacemaker implant. I was experiencing shortness of breath and impeded ability to exercise. This condition seemed to be getting worse over time. I first noticed it about 4-years ago and my maximum heart rate, with rigorous exercise, was about 128 bpm. Before my cancer treatment I had no issues. I also have “mild to moderate” mitral valve regurgitation and “mild to moderate” aortic valve regurgitation. They did not recommend any treatment for these conditions. I had a nuclear lexiscan stress test a few weeks ago and they did not advise me of any issues.
I had a Boston Scientific Accolade L331 MRI dual chamber pacemaker implanted at the Cleveland Clinic in October of 2019. I am 59 years old, in good physical health, and I do not take any medications except Myrbetriq, which is for urinary frequency.
At first, the pacemaker worked very well. Shortness of breath went away. Was able to exercise well. I’m in good shape. Walked 6 miles the other day. And can ride a bike 10-15 miles.
I’ve had numerous issues with my pacemaker since it was implanted, including:
- Heart racing without any exertion (e.g. sitting) - 100-110bpm
- Chest pain when heart rate elevated to 120 bpm+
- Heart rate would max out too quickly (set at 155 bpm), particularly when using my arms to do things like simply sweeping a broom.
- When wearing a halter, I got a call from the monitoring company to ask me if I was OK. They said I had a “ventricular tachycardia event”. My electro cardiologist later determined this was caused by my pacemaker (which I understand is a rare event).
- During the month I wore the halter, they confirmed over 100 events that matched the symptoms I reported.
I’ve had the pacemaker adjusted about 8 times since it was installed. Also, I have met with the Boston Scientific manufacturer’s rep twice and he is helping the doctor make programming adjustments.
Most recently they turned off the lead to the lower heart chamber – they tell me that lead was causing my chest pain. And they turned off the motion sensor part of the pacemaker, too. This helped a lot.
But I’m still having the following issues:
- A couple of times this week my heart rate went up to 180 bpm (beyond the pacemaker’s 155 max setting), according to my Apple watch (which seems to track very accurately). In one case, all I was doing was using a garden hose to water some roses. This caused some chest pain and I had to just stop what I was doing and put my hands on my knees until I felt better. It only took a minute or two to feel better.
- My heart rate is going up fast again with little exertion. For example, when I get out of the shower and "towel off", my heart rate goes to the 120s.
- When we recalibrated the pacemaker a couple of weeks ago, we tested it walking up stairs. I could walk up 2 flights of stairs and my heart rate was about 95. Now it’s going to 100 - 110 with just one flight of stairs; 115 – 125 with two flights.
- Any thoughts on what is causing my heart rate to elevate very high with moderate exertion, particularly when I’m using my arms? I think all I have left to adjust on my pacemaker is the sensitivity to respiration ... but I’m not breathing particularly hard when my heart rate accelerates.
- Is this level of required adjustments “normal” for a new pacemaker recipient? (My cardiologist told me they usually don’t have someone my age – 59 – in my good physical condition, so it sometimes takes a while to find the “sweet spot” for settings.)
- Any thoughts on what you suggest I ask the doctor? I transferred my oversight back to my local cardio team. I could go back to Cleveland Clinic, if necessary. The head of the pacing department, Dr. Bruce Wilkoff, installed my pacemaker. I may schedule a tele-med call with Dr. Wilkoff to discuss, but wanted to get this forum’s input before I schedule.
Any help is appreciated. And best wishes to everyone here!