Frustrations with rate response, communication related to device selection
Apologies for length of this post:
I am interested in knowing if my experience is shared by others. I am a recent (12/10/2018) of a pacemaker. I am 69 years old and very active. I probably do 3-4 times the recommended 150 minutes/week on a regular basis. I have been a swim coach for 40+ years so swimming is a primary exercise but I also bike, paddle, XC ski, hike and I run some. I have had a very low resting HR for quite a while (low-mid 40s). In recent years it seemed like I could not get my HR up, typically 110-120 at the max. In October 2017 I had a tick disease called Anaplasmosis which among other things knocked my red cell count way down and it has not fully recovered. As a result, when I felt very poorly last year I attributed it to the anemia. Eventually, I got the opinion that my level of anemia, while below normal, was not enough to account for my exercise difficulties. A Holter monitor and other evaluations led to a diagnosis of Sick Sinus Syndrome. An EKG taken on 11/8 showed the absence of the small bump that should have been the SA node firing. When I saw this, I reluctantly was forced to agree with diagnosis.
On that day, I discussed my lifestyle and level of activity with the EP/Surgeon. I wanted to know about the rate response function and how that worked. He indicated that the pacemaker would sense my respiration and emotion (maybe he just said motion) and that it would then appropriately increase my HR. I really liked this doc and had a lot of confidence in him. I was told scheduling would take about three weeks and that they would call when they had an opening.
After two weeks, I called to see if they could give me some sense of a timeframe since I had travel plans for January 7 and needed to know if I had to cancel them. They said they were waiting on insurance. I called the insurance company and they indicated they had notified the cardiology place with approval. I called back the next week and was told they had three opening the following week, so I signed up for Monday the 10th. I’m not sure if they were going to call me as they had indicated.
When I went in the prep room, there was a whiteboard with my surgeon’s name on the top and a list of things they needed to do, IVs etc. They checked them off as they completed them. About an hour before I was due to go in, they erased my surgeon’s name and wrote another one. They didn’t know why but was assured that the new guy was very good. I was not happy with this but went ahead with it and as far as I can tell, the actual surgery was fine. The next day, the original doc came to my room apologizing, saying he didn’t even know I’d been scheduled and that he had been out of the country the previous week.
For probably the first time in my medical life, I followed the recovery instructions to the letter. No swimming for six weeks, no driving for four weeks-all of that. I started walking right away and after about two weeks, I felt like I was actually getting faster. I had my first follow up appointment and all systems looked fine. I asked the device tech guy if I could begin to push the effort a bit and he said that was fine. About three weeks post-op I was walking up to two minutes faster per mile than previously, 15-16 minutes instead of 17-18 minutes. I did one six mile walk where I had only one mile over 16, I thought that was pretty good. I traveled to Florida on 1/7/19 and kept up the walking there, even adding a little jogging. I felt like I was getting the first training response I had felt in a long time. I was very encouraged but was anxious to see how things went in the pool when I could start that.
I started swimming on 1/21 and was very cautious at first but made steady progress for about 2 ½ weeks. Then things stagnated, or so I felt, plus I was sensing that some other aspects of the PM performance felt a little off. I called the office and they had me send a “transmission”. They called indicating that it seemed to be working properly but made an appointment to come and see the device tech folks. This is where things get interesting.
I met with a different tech person than I had seen previously. She asked me to describe what I was feeling. I told her that I did not feel like the rate response was kicking in as soon as it was, that my HR in the pool was still only about 110 and that other times ,like walking up a steep hill, it was only in the mid 90s. I also had some very faint episodes of re-syncope, which had totally disappeared. She then said something like “I’m surprised they gave you that device.” She indicated that my Medtronics device had only a motion sensitive accelerometer and is not responsive to some forms of exercise. I had read some things about certain devices not working well with swimming and/or cycling. I saw some references to a particular German device that worked well for swimming. I also saw accounts such as the older gentleman from Australia who had set some masters national records since his surgery-so I it seemed that a PM could be effective for swimming if it’s the right one.
The device tech mentioned above then continued along this line: “I should not ‘bash’ my company since I work for them, but I can tell you why they gave you the device they did." It seems that the local hospital and associated health care network has a business arrangement with two companies, Medtronic and one other, neither of which makes a device for which the rate response works on anything but motion, not respiration. She said that the doctor’s hands were tied regarding which device to give me based on the “business model” and that the health care system placed that business model ahead of patient care.
She made a few tweaks to my device which she hoped would help. So far, I do not notice an appreciable difference. I continue to be able to walk at an increased pace over flat ground and struggle with hills. It was explained to me that the problem with hills is that you tend to slow down your speed and your stride rate. With the slower stride rate, the accelerometer senses less movement and lowers the HR just when you need it the most. She said that she gets the same complaint from runners a lot.
I am very frustrated at many levels with this experience. I very much trusted the doctor who told me that the device would sense my respiration rate and respond accordingly. I can also accept the possibility that he may be very competent at diagnosing my issues and as a surgeon but may not really understand how the devices work. There has been miscommunication and misinformation from every angle. At this point I am not sure how I will proceed and who to register my concerns with. I am very interested to know if anyone on the forum has had a similar experience or if there are any suggestions.