Has my condo become a rehab facility for unruly blood pressure monitors?

If you have followed this blog for a while, you know I dread having someone take my blood pressure.  This is because it is exceptionally low.  Most people are aware of the dangers of having blood pressure that is too high.  But low blood pressure also has some serious health implications for some (not me at this point!) 

Where did it all start?  I am a person who always had low blood pressure.  A law school classmate joked that they needed to station someone in corners of the law school to periodically jump out and scare me so that my blood pressure would rise.  It was bad enough that this stood out so much that jokes were made about it.  But later on, when my heart’s pumping ability became deficient, I was forced to take medications causing my blood pressure plummet.  I had entered the zombie zone.
​

Low blood pressure can often cause problems like lightheadedness, dizziness and syncope (an elegant word for the more pedestrian word known as “fainting”).  Because my heart condition required the implantation of a pacemaker/defibrillator, I have a monitoring system that tracks the device as well as my weight.  For a while, 0 was instructed to take my blood pressure every morning.

Because I always follow instructions, I did take my blood pressure each morning.  It was of course unusually low, but I had no symptoms other than a really l ow reading on the monitor.  But I got a series of morning phone calls from the monitoring center, and eventually my cardiologist received the same calls.  I assured everyone that I felt fine – no dizziness, no lightheadedness, fainting.   So, we decided that I could stop using the monitor on a daily basis, but that I should let my doctors know if I ever had any symptoms of lightheadedness, dizziness, or fainting.  This seemed very reasonable to me.

I went along happily for probably close without taking my blood pressure.  Then due to some changes in medication, my heart failure doctor wanted me to take my blood pressure each morning.  The only monitor I had was wired into the device monitoring system.  I had heard good things about one particular brand of monitor that was recommended for heart patients, which was not the brand linked into my monitoring system. 

It was only when I went to order the monitor that I learned monitors come in a variety of flavors – monitors to take the pressure in your upper arm and monitors to take the pressure in your wrist.  Since I have an extremely thin wrist, I thought it might be a challenge to get a good reading.  Plus, it appeared at the time that the American Heart Association was not high on the accuracy of the wrist monitors.  I decided to go with an upper arm monitor.

But the decisions did not stop with whether to take the pressure in my wrist or upper arm.  Nope – there are monitors that come with a standard cuff like is used in the doctor’s office.  Then there are monitors which come with pre-formed cuffs.  There are monitors that can be used by more than one user, and monitors that are wireless versus those that operate using AA batteries.  Geez – I have an easier time picking out the color for my hair when I go to the salon!

Given that the wireless in my condo sometimes is challenged, I decided the best bet would be a monitor that operates using batteries.  Because the monitors with the pre-formed cuffs seemed to be getting a lot of good feedback, I ordered one with a pre-formed cuff.  I can only say that for me, this was a huge mistake.  I don’t know if it is because I have a small upper arm, but I had a devil of a time getting the cuff to fit on my arm to where it felt like it was tight enough to obtain a good reading.  Indeed, the readings were often low.  To be fair, it could be just the fact, that I have naturally low blood pressure that led to the readings.  I had also been warned by the medical professionals that you do need to get the cuff on tight enough to get an accurate reading.    

A colleague who had heard me complain about my challenges taking pressure readings with my blood pressure monitor had shopped at a medical supply store and found them to be helpful.  She thought they might help me find a blood pressure monitor that would work for me.  I was willing to give anything a try.

There was only one employee there when I arrived at the supply store.  I mentioned to her the brand of monitor I owned, and she said that her store had not had good luck with that monitor.  She was high on another brand.  But there is where things started to go south.  There were two different monitors depending on the size of my arm – one had a small cuff and one had a standard cuff.  She measured my arm and said I needed the larger standard cuff.   I was puzzled by this because medical personnel normally used a smaller cuff on my arm, and (2) the standard cuff in the  monitor she was recommending was larger than pre-formed cuff of my current monitor.  What I should have said was “As the customer this is my decision and I want the monitor with the smaller cuff.”  But I guess I assumed she was the expert because she sold medical supplies.  I guess I basically caved and gave in to someone who knew less about me and my circumstances. 

The result was I now added a second monitor that also gave me low readings and I didn’t know if the problem was the cuffs or user error.   Fortunately, because I was never lightheaded, dizzy or fainting, the medical personnel were not concerned.  Also, once I started to take the drug Entresto, I saw some improvement in the readings.  I limped along alternating between the two monitors until two things happened.  The first was that I struggled so much to get the pre-formed cuff on my arm that I think I wore it out.  Often the cuff would begin to prematurely deflate and not give a reading.  Because it was beyond the warranty period, I ended up just disposing of the monitor in the dumpster. 

Then I applied for the Meteoric HF study.  I was excited to join the study, but once again was afraid that my blood pressure readings would be too low to qualify.  But I got in!  And because I got paid for an interview and for travel expenses, I decided to use some of the money they paid me to buy a smaller cuff to go with the monitor I purchased at the medical supply store.   Of course, the problem was that this brand did not have interchangeable cuffs. 

Nope – you had to buy a new monitor specifically designed for the cuff.  Bummer.  So, I ordered a whole new monitor with a smaller cuff.  When I got the new monitor, the cuff was indeed much smaller.  Overall the readings were better, but still I would come up with some bizarre readings.  Then four weeks into the study, I had really low readings.  I could not understand why.  Fortunately, I had a study appointment the next morning and my blood pressure reading was fine, and I was relieved. 

But the  next week, I had another day with seriously low readings.  I called the study coordinator and brought my blood pressure monitor in to be checked that morning against their equipment.   Oh my gosh –the systolic reading on my monitor was 26 points lower than on their equipment.  This is huge!  The study doctor came by to see me and did an exam and concluded my heart was fine.  But he said that based on the discrepancy between my monitor and their equipment, I should put my monitor in the closet with a sign on it to never use again. 

So now I had two monitors – one which was proven unreliable and the other which was the same brand but with bigger huge cuff.  As far as I was concerned, I couldn’t use the second monitor either.  I began to conclude that my condo was becoming the Island of Misfit Blood Pressure Monitors.  Or maybe a home for unwed blood pressure monitors.  Or maybe a rehab unit where unreliable blood pressure monitors could learn a new trade,  Needless to say, I was not amused.

Of course, I also knew there might be points coming up in the study or afterwards where medical personnel would want me to take daily readings again on my own. I needed to suck it up and figure out a better alternative to what was in my closet.  I consulted friends a few friends who have to take regular blood pressure readings.  The brand they relied on was  the first brand I purchased.  I decided to again use some study money and order this brand – but this time with a regular cuff and not the pre-formed cuff.  I measured my upper arm and saw that the standard cuff would probably do, especially as it was smaller than the cuff on the other monitor I had.  But if I also learned that if I decided I needed a smaller cuff; I can order an interchangeable cuff and not have to get a whole new monitor too.

Is it working?  I took my blood pressure four days at home before I had a study appointment.  Each day, my blood pressure reading was acceptable.  This was a good sign.  Even though it is always awkward to get the cuff positioned properly on your own arm, the cuff seemed to fit much better.  But the true test came when I went to my study appointment.  The study coordinator took my blood pressure and pulse with their equipment.  Then when we finished the study part of the appointment, we took a reading using my monitor.  The coordinator had me put the cuff on so that it would be true to life.  And the verdict:  Well it was almost exactly the same reading as on their equipment.  In fact, the reading with my monitor was just a shade higher.  Yay - maybe I finally found a winner!

It is a struggle to take your own blood pressure because it is just so awkward to get the cuff on your own arm, and to make sure that it is on properly to get a good reading.  The least you can do is to find one that is the most user friendly for you.  So, here are my tips:
 

• First, it would be nice if there were a place that patients could go to and test out blood pressure monitors before a purchase – to see which style and cuff or wrist sizes work best.  I doubt such a place exists.  The next best alternative is to find friends who have blood pressure monitors and find out if you can test drive their monitor. 
• Find a brand that has a website with FAQs and video demonstrations on how to use the monitor. 
• When the doctor tells you that you need to get a blood pressure monitor, ask if you can bring your new monitor into the office to make sure that it works properly.  Then make the trip into the doctor’s office as soon as possible after buying it and test driving it a few times on your own.  Have them verify that you are putting the cuff on properly as you take the reading.  If it doesn’t work, then you have expert proof that you have apparently purchased a dud.
• Of course, make sure you keep the receipt.  If the doctor’s office confirms that the monitor isn’t working properly, you will need to return the monitor.  
• DO not give monitors to Goodwill or the Salvation Army if they were not working properly.  Instead, look for places that recycle failed electronic equipment

​Hopefully these tips will help us avoid turning our homes into hideaways for failed blood pressure monitors.