From Patient To Survivor To Patient… Again
It is hard for me to imagine with my health history, that there is anything to experience something new or different when it comes to my health. Yet two weeks ago, that is exactly what happened to me. The difference this time, I actually noticed something not right, which is something I am not known for. My reputation is that I wait to respond to a medical issue until I am critical to do something or have my body react in such a way that cannot be ignored.
I have no shortage of health problems, all related to the treatments I received for Hodgkin’s Lymphoma back in 1988. In fact, the list of diagnosis would fill an entire sheet of paper. Some are just diagnosed and just “there,” some are being watched, and a few have a bit of a higher priority and are being more closely monitored. It has been since 2021 that I had my last procedure, to replace my aortic valve (my 3rd heart surgery). But if you read
“Paul’s Heart” you have seen the above picture before, the number of “swords” of Damacles that fairly accurately describe my health. Well, it appears another “sword” is about to drop, or is at least swinging perilously as legend describes it.
While out on an early morning walk, all of a sudden, I felt my body drift to my right, uncontrollably, I could not stop it. To be clear, I am not sure if I physically drifted, or if the sensation in my head, that of a lava lamp, was causing me to feel as if I was drifting. I did not fall over anything which is what is making it hard to figure out what happened. The episode lasted approximately a minute. Nowhere near my car, and in spite of my phone being in my hand, I returned to walking back to my car, my senses now straightened, and returned home.
To be clear, I have some of the best doctors taking care of me. I have also lost several of my best advocates to retirement. Their replacements are still learning about me. Like I said, my reputation, I often do not respond and react appropriately when a medical crisis pops up. This was not going to be any exception. I needed to be certain that this warranted further attention. The last thing I wanted to happen, which happens to many of my fellow long term survivors with late side effects, was to be gaslit, or told I was being a hypochondriac (this will be a separate post). Either of these two will completely shut me down. My prior doctors all know me well enough, I do not complain about my health, unless something is definitely wrong, and yes, likely very serious. It may take a little digging to find it, but there will be something there. But to tell me it is in my head or I am being a hypchondriac will shut me down, and possibly cause irreparable harm.
Though I am generally intimidated using it, I went to my AI app and stated what happened. I think if AI could dial 911, it would have, as the app began to actually argue with me to definitely seek help, based on my prior health issues. AI listed some possibilities, including a TIA, transient ischemic attack, sometimes referred to as a baby stroke, a clot, and a few others. The point was, that I should seek medical attention. I have a family history of strokes, both my mother and father, and my maternal grandfather. Add in my radiation history and chemo history and other heart stuff, I have quite a few strikes against me.
Though it took longer than it should have, a few days later, I reached out to my new primary care physician, my cardiovascular team, and my cardiologist. The first two decided to see what my cardiologist would find.
As if this was not difficult enough to deal with, I had some other things that I was dealing with. As John Lennon said, and I am paraphrasing, “life is what happens when you are busy making plans.” I am my mother’s caregiver as she recovers from a fall, and I had a scheduled trip to visit and attend my oldest daughter’s college graduation and my younger daughter’s 21st birthday. And no, AI had no answer for how to juggle everything, but it did continue to argue with me on what I should be doing, and was not.
My cardiologist had ordered a heart monitor for me. Yes, this is the device in the palm of my hand. The last time I saw a monitor, it was a huge box, about twice the size of a cell phone, hanging around my neck. But this monitor, is just larger than a zip drive, and will stick to my chest with a pair of sensors for just over two weeks, to measure my heart rate for any abnormalities.
Great, abnormalities. When it comes to my heart, my heart is a mess and it really does not need any further attention. I have had three surgeries, a double bypass of my LAD and a stent of my RCA, along with my aortic valve TAVR. But I still have other issues as well as some new diagnosis. My mitral valve is not great. I have a left bundle branch block (an electrical issue). My septal wall moves in reverse. I am in congestive heart failure as my ejection fraction currently stands at 40%. Recently I was diagnosed with myocardial ischemia (my heart does not get enough blood). And for purely entertainment purposes, I have an excitingly audible murmur, which draws attention from anyone who wants to hear a really strong murmur with their stethoscope if they have not heard one. I am a freak and should charge admission for this.
So sure, this incident should have a decent level of concern and response considering everything I deal with, especially with my heart. Just another “sword.”
The monitor arrived the day after I returned from the college graduation. And on it went.
It is adhering with tape, just below the top of my breast bone. You can see part of my bypass scar just below the monitor sensor. I don’t feel anything happening with it, and it does not make any noise. And compared to the old bulky type of monitors, this one is barely noticeable. Now, all I do is going about what I do, and make note if I am able, of any symptoms I notice, which again, is difficult for me to do.
I know the things that are being looked for, and no, I do not need any new diagnosis made. And I could go the whole test period without the monitor picking anything up, especially if this was a one-off event, which is what I am clearly hoping for.
I am just thankful that my doctors do not gaslight me, or treat me as a hypochondriac, and instead take my symptoms and descriptions seriously.
Paul's Heart 