What does it feel like to be monitored daily by the heart police?

I went home from the hospital after my pacemaker/defibrillator upgrade and started the process of getting used to having this new heart device inside me.  During the first week, I began exercising on a gradual basis.  Even though I was still scheduled to see the advanced heart failure specialist, or maybe especially because I was going to see this specialist, I needed to make sure that I kept up my cardio routine to hopefully improve my heart.  My physical fitness was a priority during this chapter in my life.  Fortunately, I had some monitors helping me fulfill this priority. 

​When I say monitors, I am referring to two types:  (1) an actual monitoring machine and (2) the observers who will keep track of the results of the machine on a daily basis.  Both the hardware and the people are critical to my heart health.  

Before the upgrade, I had been assigned a monitoring machine for my pacemaker.  It was a small unit worked through my phone line.  The device company sent it to me after the pacemaker implantation, and I had to set it up and test it on my own.  The directions that came with it were straightforward, and installation was very easy.  The unit stayed by my bed for more than a year, giving me comfort that all was well with my device.  But now I needed a new, more advance unit for my upgraded pacemaker/defibrillator.

I received the unit and proceeded to set it up.  This time, I had a little difficulty setting up the unit.  But fortunately the heart monitor center had some very helpful technicians who assisted me over the phone.  As I recall it took less than thirty minutes on the phone to program the unit and I was good to go. It is comforting to know that this unit is always at work monitoring my device, and in turn my heart.  The way the system works, it transmits heart data to the monitoring center on a regular basis so that they know the device is in good working order.  Periodically, the results are shown to an electrophysiologist to assure that the device readings are acceptable.

But I also received two other pieces of equipment that would connect to the monitoring system and would also transmit data to the monitoring center.  Both of these pieces were daunting in their own way:  The first likely would intimidate any red-blooded female, and the second likely would intimidate the employees at the heart monitoring center.   

I learned very early on in my life with heart failure that keeping track of my weight would be important. When I first got the pacemaker, I was told that I needed to keep an eye on my weight each day to make sure that my weight did not go up 2 pounds within a day or 5 pounds within a week.  If I experienced this type of weight gain, I was told that I must contact my doctor.  This was because a weight gain in these ranges suggested that I was retaining water and water retention would impede proper heart function and cause shortness of breath.   But when I had the pacemaker, the monitoring unit was only monitoring my pacemaker.  I alone was responsible on my own for keeping track of my weight. 

So the first piece of extra equipment I received was a special scale that was wirelessly connected to the monitoring system.  I was instructed to weigh on this scale every dayaand the weight reading would be transmitted via the phone line to the monitoring center.  This demonstrated to me that the device that was now inside me was to monitor a more serious case of heart failure.  While I was happy that someone was teaming with me to make sure I stayed healthy, I have to be honest with you.  My first thought was:  "I defy you to show me a woman in the United States who loves having a monitoring center that keeps track of her weight on a daily basis."  But then I realized it was necessary and I just needed to suck it up. 

Fortunately, whether it is my strong sense of exercise and diet discipline, and/or the monitoring center’s influence, I am happy to report that I have never had a weight gain in the range that requires a call to my doctors.  I have come close, but never crossed that line.

The second piece of equipment that I received with the system was a blood pressure monitor.  Again, this is another measurement that I had to take each morning, and that would be transmitted to the monitoring center.   I remember very clearly the conversation when the cardiologist suggested that we include the blood pressure reading as part of the data that the monitoring center would receive.  The cardiac nurse and I looked at him and I said something like, "You know how low my blood pressure is.  Are you sure that you want to do this?"  He said something like:  "Let's try it and see what happens."

The first time that I had a really low reading of my blood pressure, I got a call from a very nice woman in the heart monitoring center who sounded very concerned.  It may help you to understand her concern if I tell you that the typical heart patient is more likely to have high blood pressure than low blood pressure.  I don’t remember what the exact blood pressure reading was on the day this woman called, but I know some of the low readings that I have experienced.  So to have a patient who has a blood pressure in the neighborhood of 86/56 could be disconcerting. 

She advised me that I had very low blood pressure.  I told her that my normal blood pressure can be low, and that she should not be worried.  I told her that I was not at risk of fainting.   She asked me if my cardiac nurse was aware of the fact that I have low blood pressure.  I assured her that yes, my cardiac nurse was very much aware of my low blood pressure.  We ended the call.  I think the monitoring team also raised concerns with my cardiologist, who assured them that the low readings were routine for me and that I was functioning on a normal level. 

Around 9 months after I received the new monitoring system, I received a call from my cardiac nurse.  She asked me if I would mind if we discontinued the blood pressure monitoring.  I told her that this would be more than fine with me.  I think after many days of low readings with no consequences, the cardiac team decided it made no sense to continue to monitor the readings.  The people who staff the center are very dedicated and concerned about each patient, and I am glad that they reached out to me and to to cardiologist to check and see how I was doing.  But there was no need to take their time reviewing my blood pressure readings when there were other patients who need monitoring of this vital sign more than I did.

The experience with the daily blood pressure monitoring did reinforce with me that I have low blood pressure, and that while I might be used to this, others are not.  So whenever I have a medical appointment, I make sure that I tell the person who takes my blood pressure three things:  (1) I tend to have low blood pressure, sometimes really low; (2) sometimes it is hard to detect the blood pressure and the technician has a hard time getting a good reading; and (3) I feel fine regardless of the low blood pressure. 

Despite these warnings, I still get some strange looks.  I occasionally get some questions like, "Are you sure you don’t want to sit here for a minute before I take you back to the doctor’s office?"  A typical response from me would be something like:  "Actually, I’m having a harder time walking around in this pair of high heels than I am dealing with this low blood pressure."

​So is it a pain sometimes to have someone looking over your shoulder from a fitness perspective?  Putting aside the “big brother” aspect of it all, nothing that they see about me is confidential information.  More to the point, everything they see about me is related to making sure that my heart health is at its best.  If the people monitoring the readings anything unsusual, they can tell my cardiac team who can adjust medications or offer other forms of treatment.  The knowledge that someone is monitoring the functions of my pacemaker/defibrillator is priceless.  Of course, I woudl rather that this handy little defibrillator never activates, but it is nice to have it and to have people checking on it just in case my heart should ever have an episode that causes cardiac arrest.  In other words, I will welcome any and all monitoring by the fitness police.