CLS is my new friend...

Thursday was my next pacemaker interrogation.  It was the first one that I had since December 2nd, because the cardiologist was giving me extra time before enduring one again, in the hopes that I would become more accustomed to the pacing.

I have not.

I barely slept the night before, thinking about having my heart forced to beat by the test.  Each time the accelerometer goes off, it feels as if my heart is being squeezed, as if I am choking, and as if I cannot breathe.  I know those things are not happening in my head, but my body is most firmly convinced that they are.  I have struggled wrapping my mind around having another interrogation.

Unfortunately, I forgot that I needed ECG leads attached so that my heart could be monitored during the test.  I forgot and did not try to prepare for that.  The nurse technician held up the stickers and I burst into tears.  I struggle with such enormous shame when it comes to nakedness and exposure.  Having leads placed above and below upper my female parts should be easy but it is not.

I wept and shook and basically couldn't speak more than "I don't think I can do this."

The nurse technician was very patient and was primarily quiet for a long while.  At one point I asked her if police would come after me if I never showed up again ... you know, having this pacemaker inside of me.  I wept and kept trying to think about having the leads placed and not thinking about taking off my hoodie.

Then, the nurse technician did something extraordinary to me.  She took a deep breath and said, "I think we can do this."  Not you.  We.  She repeated it two more times, almost as if she was convincing herself.  She said that she could work around my clothing and at least place the top two through my collar.  The others she thought we could just lift my clothing and she could place without looking.  Then, again, "I think we can do this."

Before I really understood what I was doing, I nodded my head and got through being hooked up.  Well, not through it, but they were placed.  And we were moving onto the tests.

The thing is, even before the leads debacle, I was nervous because I have been doing lots and lots and lots of thinking about the settings on my pacemaker.  The first week I had it, when I completely freaked out, they turned off the CLS setting, switching it to the motion sensor setting.

What the CLS (closed loop stimulation) does is pace your heart according to how hard it is working, rather than how much you are moving.  The thing is, your heart can work hard just sitting, especially with strong emotion.  I felt like I was asking for a nightmare, however, I have been so bloody exhausted since the pacemaker surgery.

My average heart rate, on a monthly basis, has been 64 beats per minute (BPM).  Being on a beta blocker causes fatigue, but I have been bloody exhausted since the surgery and the cardiologist is trying to separate the side effect of mediation from the strain of a heart that isn't beating enough.  Hence, this is why the cardiologist has been keen on my starting cardio therapy.  It isn't high enough for how hard it is for me to stand for a length of time, much less walk up the stairs or take out the trash/recycling or schlep about a grocery store when there are no wheelchair shopping carts.  It certainly is not enough for me to try exercising.

Last year, I received an unexpected large check at Christmas and opted to spend it all on a treadmill.  I felt silly trying to exercise and haven't really talked about it much, but I thought that, push come to shove, I could rig a harness from the ceiling to keep from falling and walking on a treadmill had to be possible to some degree. I found a simple one and have been walking since mid January 2015.  Only what I can do is a measly 10 minutes a day and how fast I walk has dwindled from 1.5 miles an hour to .8 miles an hour.  It is just so hard.

The cardiologist wants me to do cardio therapy, primarily on a recumbent bike, where I would not be bearing weight as I try to exercise.  The co-pays for that are not doable, even if he could talk Medicare into approving it.  Plus, getting out five days a week for a few months would be too much for me.  So, I thought on the matter and went looking for a recumbent bike.  I found one that was approximately 75% of my grocery budget and bought it.  For the past four weeks (and two days), I have ridden on it (tortured myself) and eaten lots and lots of oatmeal (it was a good thing my freezer was overly full following the Grand Visit of 2015).

One of the symptoms of NCS is exercise intolerance, which is why my pace on the treadmill has gotten slower and slower.  Already I am struggling to finish my 30 minutes even close to the pace I was able to do the first week.  The cardiologist is right, though; I am able to do more than I can on the treadmill.  I huff and puff and sweat more than I ever did at the gym with the personal trainer.  I torture my body and yet my heart rate barely gets above 90 BPM.  It's not enough for such work.

That has been a large part of my decision to ask about trying the CLS setting again.  But I also know that the CLS pacemaker is the best for patients with NCS.  I have essentially been handicapping Georgie (my pacemaker) and my cardiologist.  Here this is this merciful technology that helps folk whose need is not based on large movements.  I need that help.

On the theophylline, I had a constantly high heart rate.  But I also had tachycardia and terrible spikes in blood pressure and dangerously wide pulse pressure (the difference between systolic and diastolic readings).  Making the move to the pacemaker was the right choice.  Only the pacemaker is doing far more work that the cardiologist thought it would be and my heart is just plain lazy about beating on its own.

During the testing, the reports showed that my measly little 30 minutes of torture were the most my heart has beat on its own for an extended period of time since the surgery.  I got brownie points for that.  The nurse technician was surprised at my suggestion about changing back to the CLS setting, but she agreed that it would be better. As did the cardiologist.

The cardiologist worked very, very, very hard to adjust the testing so that it would be less traumatic for me.  Georgie's daily tests and Hal's daily reports give a fair amount of information. A lot of that is repeated in an interrogation.  So, he stripped out the redundancies, using the data from the test and report from that day for assessment, and minimized what they needed to do.

Thankfully, the testing showed that the pacemaker leads have healed and are secure in my heart.  That means no interrogation for another six months (I am already campaigning for every 12 months, arguing that is a nice, round number).  Knowing that my cardiologist is willing to minimize the testing helps me immensely with the thought of the next interrogation, but knowing I need to have ECG leads placed beforehand is equally hard.  And rather discouraging.

I still feel, two days later, the brush of her hands against my bare skin and I cringe in shame and revulsion.  Even now, just typing that, Georgie is firing on all four cylinders.  Yes, I now have this barometer of my emotions sitting in my chest.  SIGH.

You chose this, Myrtle.

Afterwards, I was struggling with my emotions and called Becky.  As we talked, I calmed down, but each time my mind returned to the thought of being physically exposed, Georgie went off.  She was paying attention to what was in my mind rather than the words in my mouth.  Gosh, I sort of dread counseling next week ... wondering how it will be possible to get through it if Georgie is going off the whole time.  SIGH.

What is interesting to me is that the CLS setting is a learning algorithm.  I asked the nurse technician if she would forgive me if I needed the setting changed really quickly.  She assured me that it would be perfectly okay.  Then, I girded my loins and asked what would be a reasonable amount of time to stick it out, to try to endure the setting to give it a chance.  She promptly answered, "One month."  That's when she taught me about it being a learning algorithm and that the first week with it turned on would be much different than the fourth week with it turned on because by that time it would have adjusted to my body and lifestyle.  A modern marvel actually.

I am not sure if it is too soon to really notice that, but Thursday evening, Georgie did not fire at all during the bike riding.  My heart rate never rose above 93 BPM.  However, yesterday and today, Georgie kicked into action and, for the second half of the session, my heart rate never dropped below 130 BPM. That's more like it!  Did the CLS setting learn between Thursday and Friday???

I ride 5 minutes at the 2nd lowest tension, 10 minutes bumped up to the 3rd, and 15 minutes at the 4th tension setting.  That second switch of the dial has become harder and harder.  Even the first switch has been difficult.  I do not know how long I can do this or if I should, given the exercise intolerance.  My goal has been to do so until April 21st, my next appointment, so that the cardiologist has more than two months of data to examine.  Does cardio therapy have lasting benefits on my average heart rate, on getting my heart to work on its own?  If so, How much do I need to maintain those benefits? would be the next question.

In the first 24 hours, the CLS went off twice whilst I was not doing anything particularly hard or thinking things particularly difficult.  Both times, my heart rate jumped to the 130s and my blood pressure was higher than it has been since the surgery and starting the beta blocker.  I was bothered by that, but instead of wanting to call the cardiologist immediately, I told myself to just get through my 30 days.

30 days.
I can do this.
Can I do this?

I love what the beta blocker is doing for me.  I was so worried about strokes with my spiking blood pressure and pulse pressure.  And tachycardia just stinks.  All three make me feel even more wretched than I was.  More so, I have been increasingly worried about my asthma and not being able to take the emergency meds (unsafe to do so because of my heart and blood pressure).  The beta blocker blunts the malfunctioning, disproportionate responses of my body.  But without the constant heart rate increase of the theophylline, bradycardia comes into play.  Hence, Georgie.  As my female surgeon pointed out, daily Georgie is saving my life.

I want this treatment protocol, but I still doubt that I can actually ... endure it.  I find it difficult to see past the next week with it, much less the next month or year.  I have not gotten any more used to the accelerometer or how it feels.  I struggle with both the emotions surrounding the pacing and then my emotions about how poorly I am handling being a pacemaker patient.

Reading the book on shame research has already changed some of my thoughts, but I honestly doubt I will ever be free of the shame of my body.  I might become more resilient during those times of shame—at least I hope so—but free of it?  No.  How could that possibly be?  I loathe that I have something in my body that requires it to be exposed to doctors for the rest of my life.  There is so much that I did not understand when I agreed to its implantation, but having regular ECGs was definitely not something I knew would come into my life.

I wonder, in the quiet of my mind, if I asked for the CLS setting because I would not be able to deny when my emotions are getting the better of me.  I wonder if I wonder if the CLS setting might actually help me, since I feel the pacing so strongly.  Wait, let me clarify.  I do not feel the near constant pacing at 60 BPM, but I feel the accelerometer every time it is used to suddenly increase my heart rate to support what I am doing.  I wonder if I asked because I wanted to be sure that I would keep working on emotions and shame even though it is so hard.

And I feel so alone.
SIGH.

30 days.
I can do this.
Can I do this?