Paul's Heart

Life As A Dad, And A Survivor

A Moment Sinking In

I do a lot of writing. There are several destinations where my thoughts end up. Yesterday, I was approached by yet another organization that I have just become intimately connected to.

This photo, is a replica of an artificial heart valve, that is sitting in my hand. I should be more specific. This is a replica of an artificial heart valve, that has been placed inside of the aortic valve inside my heart. Now, while I think I can be described as having a large heart, I am confident that the actual valve that was placed inside of me, was much smaller. I do know this. On an x-ray, it is visible to the eye. Cooooooool!

The company that manufactured this valve, asked for a small essay on what life was like before the surgery for me, and life after. To be honest, I had never really given it much thought. This surgery was just yet another surgery to correct progressive damage caused by the treatments for Hodgkin’s Lymphoma thirty two years ago. This was actually the 3rd surgery to my heart. The first, a double bypass of the LAD (left anterior descending artery), a main artery of the heart, back in 2008. The second, a stent placed in the RCA (right coronary artery), another major artery, in 2019. Unlike my bypass in 2008, the other two surgeries did not require open heart surgeries. With the risks that Hodgkin’s survivors have with open heart surgeries (bleeding to death one of them), having more than one, increases the risks. The amazing thing is, just ten years ago, these last two surgeries I underwent, were not even options for patients with my type of history.

As I was limited to a thousand words, I had to stay focused on what I needed to say about my aortic valve.

Well, I first found out that the aortic valve was going to be a problem, back in 2008 during my bypass surgery. In fact, the RCA was also discovered to be an issue at that time. Two other valves would also attract attention. Because of the lack of experience of my cardiologist, and understanding my treatment history, it was just assumed that all of the other issues would correct themselves with a perfectly functioning heart following the bypass.

Today, we now know that cumulative radiation and chemotherapy damage, does not just “go away.” It does get worse, just how much. But another factor played in to the decision to just do the bypass. Any of the surgeries that I have gone through are not permanent fixes. How long each one will last is not known, only speculated. My age in 2008, was 42. As the nurses reminded me as I was laying completely “exposed” on the operating table in all my glory, “he’s so young,” age has a lot to do with determining what can be done, when, and how many times. The decision back then was made, to sit back and watch. Over time, the valve did get worse. And some time over the last year, got much worse, very quickly.

I did not need the annual echocardiograms to tell me that. I could feel it. I could see it. My legs and ankles had begun to swell quite a bit, common for a heart that is not pumping like it should. And then there was the SOB, shortness of breath.

On a trip with my daughters to “Graffitti Highway” in Centralia, Pennsylvania, home to the large underground mine fire, we took a walk along the now closed former main road through the town, decorated with spray paint, which is how it got its name. At some point, my daughters realized I was having a hard time catching my breath, as I had to stop repeatedly to restore it.

Last Summer, that valve got much worse, to the point that I was no longer able really to go ten feet inside the home, without being out of breath. Tests would confirm, the time was now to replace that valve.

As I mentioned earlier, in a procedure that was not possible for myself and my fellow survivors, doctors were able to use a method called TAVR, to go through my leg, and insert that valve, the replica pictured in my hand, into my failed aortic valve.

When I awoke, the relief was instantaneous. As soon as I was able to sit up, a fete that prior to the surgery often left me struggling for air, I was now able to breathe easily. I cannot remember the last time I was able to breath this way. My recovery was going so well, I was actually discharged the next day. According to my research and fellow patients, I was anticipating at least a four to five day hospital stay. But not the next day!

From there, just as I had with my prior two surgeries, I followed my doctors advice, to get active, at least go for several walks. I completed my third round of cardiac rehab with flying colors. After struggling for thirteen years, because the job was not done completely back then, I felt a sense of normal (at least as far as my heart goes).

I now feel more than confident, that my long term goals of my cancer survivorship, have an even better chance now, to see my daughters grow into adulthood. Every year is another milestone. And it is definitely happening. A major milestone will be hit this June with my older daughter.

So, I finished my essay acknowledging how great life was again, now that I did not feel that my heart was going to fail me.

I do have two other valves in my heart being watched, but are nowhere near the level of action yet. And it is likely, my bypass, stent, and this new valve, will all have to be dealt with again, quite possibly as some sort of cataclysmic event several years from now. And then there are the other issues of the systems in my body, dealing with late effects from my lungs, my spine, my esophagus, my thyroid, and more, are now making themselves known.

My heart has always been the one getting the most attention, and giving me the most to think about. Because if anything were to happen to the heart, that would be the end of the story. Now, I get to live out more chapters. And this book is only getting better.

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