The nursery rhyme goes, “sugar and spice, and everything nice. That’s what little girls are made of.” This is one of many rhymes and lullabies my daughters heard from me when they were younger. There are still buzz words and phrases they hear from me, that remind them, I have not forgotten their childhood memories they have given me. Of course, that often more likely results in the teenage “eye roll”. I don’t care.
Those days are so long ago now, and Easter dresses and other holiday outfits, are now prom gowns and other formal dance dresses.
But this moment is more than just about inevitability. It is yet another milestone that I have been able to reach in my cancer survivorship, and with all the health issues I have faced because of that survivorship. In the past, many of my caregivers often accused me of understating and undervaluing the events that I have gone through, just because I keep on “keepin’ on.” It is all I know.
The reality is, and words I will never forget hearing from my cardiologist, I was dying back in 2008. It was “not a matter of ‘if’, but ‘when’ from a fatal heart condition.” Not my cancer, but an issue related to the radiation therapy I received for Hodgkin’s Lymphoma back in 1988. That therapy has cause many issues, just to my heart alone.
My daughters now old enough, did not witness my cancer journey, and were just toddlers when I had my life saving open heart surgery (the first of three eventual heart surgeries), so they really do not have many memories of that. As time has gone on, they have seen more of the issues I struggle with, but now they are older and can understand why.
They understand it goes beyond a Dad being all sappy and mushy as I cling to pictures with the Easter Bunny and playground games, and then look at them now, and lose it.
My doctors now know, I do not underestimate or undervalue the medical challenges I have faced. But boy do I celebrate each new milestone and event, I otherwise would never have seen had it not been for the medical experts and the science that found the cures and surgeries to help me heal.
I warned my older daughter that with this being her last semester of high school, these next few months were going to fly by. We are already through two months, and prom season is around the corner. Another milestone by all rights, I know I am more than lucky to be able to see.
Of all the issues that I deal with from my treatments for Hodgkin’s Lymphoma over thirty years ago, my heart has consumed the majority of the focus. Obviously, the heart beating is the most important factor in our life. My first heart surgery was an emergency double bypass for what is nicknamed a “widow maker” blockage (the name speaks for itself) of the main artery to the heart. Then, eleven years later, a second heart surgery to place a stent in another major artery of the heart.
It is the third heart surgery, just over four months ago now, that psychologically had managed to jar my thinking. The diagnosis was “congestive heart failure.” The widow maker had it occurred would have been an instant event, and without immediate intervention, as my original cardiologist put it, “was not a question of ‘if’, but ‘when'” I was going to die. But in the years that have passed since then, I had never seen the words “congestive heart failure.”
Being as involved in cancer and survivorship support, I have heard of CHF, many times. And really none with any positive outcomes. From those I knew, if you were diagnosed with CHF, there was really only one eventual possibility to survive it, and that would be a heart transplant. Heart transplants are not an easy thing to get done as it is. But it is literally unheard of in my world of Hodgkin’s survivors. Because of the chronic, progressive, and permanent issues, we are typically not candidates for heart transplants. The odds of survivorship are insurmountable. We may be getting closer to that option, as last year, a fellow survivor fought hard enough, and advocated enough to finally find a doctor willing to perform the transplant. Alas, there was a complication pre-surgery, which then disqualified her for the transplant. She died soon after.
It is easy to get lost in the words “heart failure.” Simply put, it means that the heart is not beating as it should. It is not however, always as bad as it seems. There are certain levels of heart failure. For the purposes of today, and this post, I am referring to the heart valves. There are four: aortic, mitral, tricuspid, and pulmonary.
What leads to heart valve disease can vary. You can be born with valve defects. Infections are also a cause of heart valve disease. Heart attacks and other cardiac events can cause damage to the valves. Other factors can include diabetes, obesity, high blood pressure, and high cholesterol, all contribute to heart valve disease. And then there are causes, created by curing other illnesses. Such is the case of treating cancer. Exposure to chemotherapy and radiation therapies can cause progressive and cumulative damage to the heart valves. I can speak to this personally.
Unless you are under a cardiologist’s care, it is difficult to recognize when you are dealing with heart valve issues. But the symptoms are there. The trick is to recognize them. Some symptoms can be quite subtle and almost unrecognizable, such as lightheadedness, more tired than usual, or even feeling “off”. A little more attention-getting could be an irregular heartbeat you feel, or a flutter, perhaps even chest pains. And the most noticeable, swollen ankles and SOB, shortness of breath. Though I had been aware of my valve issues for more than a decade, my health history required a lengthy “wait and watch”, to determine the right time to repair the affected valves, as my breathing issue got worse, I could tell the time was getting close. Something needed to be done.
There are various means to fix bad heart valves from open heart surgery to methods using trans catheter means (through the leg), much less invasive. And that is the experience that I now have.
What you are looking at is a replica of my new aortic valve. And it is amazing to know, it is close to its actual size. This is what is known as a bio valve (artificial). The other option is a mechanical valve which results in a much more monitored after care and precautions.
Whichever valve is used, the result following the procedure, provided your symptoms were severe enough, is immediate relief. After more than a decade of feeling this way, four months later, my heart is still working great, well, better than it was. I still have other issues with the heart that have to be addressed, and my other non-cardiac issues, but for now, I am enjoying every step I can take without collapsing from the lack of proper blood flow. And you do feel the difference.
So today, is Heart Valve Disease Awareness Day. You might just be surprised who is celebrating today. Celebrate with them. You and they have that chance.
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.
Paul's Heart 