Paul's Heart

Life As A Dad, And A Survivor

Poster Child For The American Heart Association

The caption for this photo may be a little hard to read, or even recognize. But this photo is a forty year old photo of me, in my senior year of high school. You just have to take my word for it, unless you can actually read the blurry print accompanying the photo, but it is me. The significance of this photo as it turns out, is pretty strong, especially if you believe in fate.

How many times have you been somewhere, and donations are being collected for a specific cause such as a homeless shelter, perhaps someone who lost a home in a fire, funeral expenses, anything really? Some may think that spare change or a few dollars will not make a difference and not put anything in, or perhaps they will. The truth is, you never know the impact it has on the benefactor. Unless someday, you end up in that situation yourself.

So, here is where the photo came from, my senior yearbook from high school. Forty years yesterday in fact, was to be a “jump rope-a-thon” to raise money for the American Heart Association. It was to take place that morning, from 9am to noon (basically two periods and my lunch time). Teams of up to six were to participate. Usually this event has a pretty good turnout.

And then, one parent became a killjoy, contacted the school district administration to complain about missing classes, and a district administrator then, put pressure on the coordinator at the high school to change the date and time from Friday to Saturday. Well, you guessed it. The fundraiser was cancelled due to lack of interest to be done on a Saturday morning.

I had been raised with the mentality to make a difference wherever I could. And though I was unaware of anyone in my family who had ever had to deal with heart disease in any form, I felt this was too important not to happen. So I approached the gym teacher and said that I would still like to do the “jump rope-a-thon,” solo (as my team was not available with the proposal I was about to make).

As it was my senior year, I had two study halls at the end of my day. Add an extra hour after school, I offered to jump rope, for the entire three hours as the event would have been conducted, that same day, only in the afternoon. Other than jumping rope in gym class, I have never trained or endured any extended time jumping rope. But I was a kid of 17 years of age. How hard could it be?

With a five minute break every half hour to either drink water, or use the bathroom, I completed the three hour challenge/fundraiser, raising $170. But that was $170 more than what the AHA was going to get thanks to the efforts of a whiny parent. Yes, I said that. Considering today that kids miss classes for all kinds of activities, even “tolerated” “skip” days. Yes, as a parent, I know about those as I have older teenagers.

Anyway, getting back to my effort, I did not give it any further thought. I felt good about what I did, and that it would at least benefit someone. As I got older, I would have relatives who would be diagnosed with heart disease. My grandmother would require a pacemaker. My father would suffer a major heart attack. I never forgot about that day that I jumped rope for three hours, grateful that hopefully my efforts helped research in treating cardiac patients.

Now for the kicker. I never expected to be one myself.

As a result from being treated with an extreme dose of radiation (4000 grays, you can look it up, that is bad) for Hodgkin’s Lymphoma, combined with the toxicity of chemotherapy, damage to my heart developed over the next eighteen years.

This is a diagram my new doctor, a cardiologist, was using to explain what was happening to me. Cumulative damage from radiation therapy, over time, had caused enough scarring to block the left main artery to my heart. Though his note said 80-90% blocked, it was confirmed 90% once inside. This resulted in an emergency double bypass to save my life before having a heart attack referred to as a “widow maker.” I do not need to explain to you how serious that is, because the name speaks for itself. You die from this.

It would be nice, if that is where the story ended. The doctors left the one marked “RCA” alone, as it was “only” 30-40%, and expected my body to fix itself, with proper diet and exercise. Not shown here, is the report that also showed I had an issue with two, eventually three valves inside the heart. Again, they too would be assumed to recover on their own with a lifestyle change.

Unfortunately, there is no lifestyle change that can be made to reverse these late developing issues from radiation and chemotherapy treatments. Eleven years later, I would have my second heart surgery, which even looking at that word “second”, I could never have imagined having one, let alone another. Remember that “RCA”? Well, in 2019 it reached the 90% threshold. Fortunately, this was correctable with a stent.

You see, one thing about us Hodgkin’s survivors who have been exposed to the extreme treatments that we were, we carry extreme risks later in life, with corrective surgeries, especially open heart surgeries. One open heart surgery is risky enough, let alone a second one, with risks being bleeding to death, to difficulties healing.

A warning came along with this stent. One of those valves, discovered back in 2008, was nearing severe need to be replaced, likely to occur within years of having the stent replaced. And a couple years later, that valve needed to be replaced, my third heart surgery.

There are no guarantees how long each procedure will last, and as of right now, patients in my situation are not usually candidates for heart transplant because of all the risks. It is quite jarring to see the words “heart failure” written on your medical record, and only recently, were the words “radiation induced”, a crucial distinction and finally a recognition of a condition as a result of extreme levels of radiation exposures and toxic chemotherapies.

I would like to think that is the end of the story with my heart surgeries. I know that it will not. Part of the close surveillance that I am under, because it is important to follow up all of the repairs, that the bypass is still working, the stent is still open, and the valve operating as planned, these things are not permanent. Meaning? I am likely to undergo more heart procedures in the future. I do not know when, just that it will happen. The good news is my bypass is still doing great (I was told 10-15 years) as I am near my limit on that, with the bypass still holding at 40%! Stents and valves are not permanent, expectancy is usually ten years or less, I have a ways to go on both of those.

For now however, I am riding my new “feeling” of health for as long as I can.

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