Paul's Heart

Life As A Dad, And A Survivor

Happy TAVR-sary?

If you have followed “Paul’s Heart” for at least a year, you know that I mark various health anniversaries and milestones, beyond my cancer survivorship of 32 years from Hodgkin’s Lymphoma. Today marks a new anniversary, an amazing procedure, replacement of my aortic valve.

This is a picture of the replica of my actual valve replacement, actual size, in the palm of my hand. Now for the cool part of this post. If you are wondering how they put this large device inside my heart, as I did once I received this replica, here is a short, and very cool video, showing how the procedure is done.

@ghostmedical

Aortic Stenosis is a type of heart disease where the valve becomes narrowed and doesn’t open properly. #medicalanimation #awareness #heartdisease #interestingfacts

♬ Somebody That I Used To Know (feat. Kimbra) – Gotye – wednesday

Pretty cool, right? What is even more cool, is that just a few years ago, I would never have been eligible for this surgery, because of the late effects I live with from my cancer treatments. You see, the radiation damage that caused so much extensive damage to my heart, this is my 3rd heart surgery, is also, what made this type of surgery, nearly impossible years ago, from “scarring” caused by radiation damage. But because of progress and technology, I was able to avoid having my chest opened again, and have the procedure go through my leg, into my heart as the above video demonstrates. The obvious advantage, much faster recovery time, I was doing stairs in two days as opposed to building up a tolerance to walk even at eight weeks.

I knew this day was coming. However, when I arrived back home from a visit with my daughters, there was an envelop in my mail, which I recognized the sender as the manufacturer of my valve.

I was initially jarred by the surprise mail. Other than receiving the package with my valve replica, I have only received emails with surveys and topics related to good heart health. Over the years, I have also learned to recognize signs, such as when you are the first patient to arrive, yet the last to leave, you know a doctor wants to see you, and that will likely not be a good thing. In this case, if it was going to be bad news, I know it was not going to be about my heart, as testing recently showed my valve was working as it was supposed to. If it was going to be bad news, it would have to be some sort of recall, which would mean yet another surgery.

But there was also one other possibility. Have you ever gotten a “birthday card” from either a dentist, auto insurer, which of course came with a reminder of a soon due premium or appointment? I allowed my mind to take a slight detour from the usual “oh here we go again” path, and recognizing the upcoming date, could it be possible…?

The manufacturer of the valve, sent me an “anniversary” card. They referred to it as a TAVR-sary, TAVR standing for Transcatheter Aortic Valve Replacement. Transcatheter, meaning, it would either go through the arm or the leg, to the heart, no open heart surgery.

It is hard to believe that it has been one year already, fourteen years from my first heart surgery, open heart for an emergency double bypass, and three years from my second heart surgery. It is also hard to believe, that this needed to be done during one of the most difficult times for hospitals, in the middle of a pandemic.

But unlike my open heart surgery, I was walking long distances the next day, and no discomfort from the surgery.

One question that I always get when it comes to all of the procedures I have faced since my days with Hodgkin’s Lymphoma. “If they knew all of these things were wrong, especially back then, why didn’t they fix them all while they were in there?” This is a perfectly reasonable question, and one that I could not grasp the answer until this procedure. The position had always been:

  • “we need to wait until the risk of a heart attack outweighs the risk of the surgery”
  • “we need to wait until the risk of a stroke outweighs the risk of a stroke during surgery”

You get the idea. My body is treated like it is a ticking time bomb. But here is the reason why, I have to live my life on the edge, waiting for another shoe to drop in an event, much like the Sword of Damocles.” All of the repairs that have been done thus far, are not permanent. My bypass, the stent with my heart, the stent with my carotid, and now the valve, all have potential expiration dates. And if those times come, I will have a very difficult decision to make, because going through them again, will be even more risky than the first time. On top of that, I still have two other issues with my heart, considered stable at this point that could require attention in the future.

I have never been able to get a firm answer on how long my bypass should last, but I have been able to estimate approximately fifteen years on average. The good news so far, as I approach my fifteenth anniversary in April, the stats are still encouraging that I have a few more years to not worry. Stents are usually patent ten to fifteen years. The type of heart valve I received, should last between seven to ten years (a mechanical valve, is thought to last a lifetime, but there are several factors that led me not to consider that option, mainly having to be done by open heart, and a lifetime of maintenance of heavy blood thinners and other potential complications).

While doctors were aware that I had these other heart problems when my bypass was done, at the age of 42, had those things been corrected back then, while they had me opened, it is very likely, at least the stent and the valve would have needed to be replaced again by now. So I get it why they made that decision years ago.

So until that time comes, that either additional procedures need to be done, or re-done, the company that made my artificial valve, had a message inside of my anniversary card, how to take care of my heart, suggestions that actually can apply to anyone, regardless if you have had heart surgery or not.

It is not easy being a long term cancer survivor. But I have had, and continue to have, a great life.

I have had fourteen more years with my daughters than I quite possibly might not have had. I have gotten to watch both grow into adults, and will get to see who they become and the lives they will have. And that in the end, is all that matters to me.

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