Paul's Heart

Life As A Dad, And A Survivor

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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 – fiona

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.

Time Is Running Out


One month is done into the new school year already. My one daughter is approaching mid-terms in college. My younger daughter about to approach mid-term of her quarter of her senior year of high school. As their Dad, I play a separate role for each.

Throughout their elementary and middle school education, I could be described as a very involved parent when it came to their education. Not to be confused with “helicopter parenting,” I simply made sure that homework was completed, quizes and tests were studied for, and best efforts were always encouraged, and achievements were recognized and praised.

Once my daughters reached high school, they each developed their own unique study habits. I turned over all of the responsibility of their schooling to them, with the exception of important deadlines pertaining to milestones, the college application process, and of course, graduation. Not one to have any place to ridicule their methods and means as students and their study habits, I did not have great study habits either, they have done nothing but produce great grades.

The school district has a very well constructed communication tool to keep parents apprised of the status of their childrens’ grades and other personal information. All I had to do at that point, is just sit back and watch. Every now and then, I would be approached by either of them for help with a specific assignment, whether it to spellcheck, or provide information. Both knew not to come to me for math, at least the “new math”.

With my college student, I no longer have that ability to see how she is doing. I can ask her how here classes are going, and I get simple answers, “good.” Instead of seeing her daily progress, I am now just an observer and must wait for the end of the semester to hear of her results. I am just an observer.

But with my high school senior, I still have a little more time of usefulness as a role model with her education. As her senior classes seem more geared to current events of the world today, whether it be business, economics, or politics, I am watching her develop as an independent thinker, something I think a lot of people fail the ability to be.

Part of her Summer assignment for her AP Government course, was to select five topics, and then find three news stories with different leans; extreme right, right, center, left, extreme left. She had to summarize each and compare it with all of the facts that she had gathered with each topic. Her first impression while undertaking this assignment, is she now understands why so many adults cannot get along with each other. The confusion for my daughter, is that when only facts are considered, solutions should be able to be found. Of course she realizes that each media resource she looked at, many have a political lean or agenda, aligned with a certain party or sub-party. Again, another observation on her part about the generations ahead of her, by ignoring the facts, too many put a party affiliation over issues that really matter to people.

She will turn 18 years old next year, and I am proud to say, I will be two for two, with registered independent voters, such as myself. My daughter will not be swayed by one particular news source, but a variety, and only when all the facts are laid out, she will make her decisions.

Another assignment she has been assigned, to argue either that “greed is good for the economy” or “greed is bad for the economy.” The assumption that we have gone from a society based on capitalism to one of greed, simply by “trickle down economics”, going back to the Reagan presidency. Simply put, make the rich more wealthy, and then they will eventually share it with those below them. Only in the forty years since the concept, that has never happened. NEVER. With the values I have taught my daughter, greed being bad, I encouraged her that she would be able to make an easy and well defined case that greed is bad for our economy.

I have to admit, with the exception of the new math, I have enjoyed assisting my daughters with their schooling when asked. I know that as adults, they have been well educated, and can have intelligent and informed conversations with people, not based on media influences. But this time is going to end when she graduates from high school, and like my older daughter, totally independent with her future endeavors.

As I see many of my friends who have just begun sending their children to school, I find myself thinking, “oh how long ago that was.” But it wasn’t. The time really flew by.

The Days After


The first few days following a major hurricane can be described in any number of ways, likely depending on how much the devastation has affected a person individually. Shock and sadness are a given as the loss sets in that our once daily lives in paradise are changed forever, perhaps, irreparably. It is easy to feel overwhelmed at the amount of clean up and repair in the days ahead, not even knowing where to start. And when our mind stops whirling like a cyclone from all that must be done, either common sense or survivalist tendencies kick in. It is this behavior that can either help, or make things worse.

There are two main things that those in the path of a hurricane, or the devastation of a hurricane, will need, gasoline and bottled water. The demand for both is an immediate switch that gets flipped, with the first words uttered by a weather forecaster, before suppliers have a chance to prepare. Artificial shortages are created, leading to panic of the possibility of not having what is needed. Someone with a calm demeanor can rationalize, that if we just purchase our goods at our normal rate, we should be able to get by until increased supplies arrive. Instead, supplies are empty of both within hours, and from there, supplies of both are not able to be kept up with. As the storm passes, all anyone knows is that there is no gas and no water. Lines form for hours at any gas station able to operate, and grocery stores, ration out water supplies as they become available. Then come the days after.

There are several behaviors that come forward in a time like this. First and most obvious, the curiosity of the devastation. As soon as you step outside of where you rode the storm out, you can see the immediate impact. But without power, cable, and wifi, we want to know just how bad it really got. This actually ends up being a bad decision for several reasons. One, with downed lines and trees, these dangers, especially if submerged in water, can be deadly. Second, “looky-loos” as they are called, often get in the way of rescue efforts, in worst cases, needing being rescued themselves. And of course, there is the unnecessary waste of gas just “riding around.”

Which of course, leads to the next issue, finding gas, or even an operating gas station. Relying on the “gas buddy” app could be misleading with people putting in false information. But the first thing you had to do was to find if a station was working, which if you saw a nearby traffic signal working, was an encouraging sign. Likewise, there would be a lengthy line of cars, many there for seven to ten hours, having hopes of being lucky to buy gas. It is inevitable that throughout this process, there would be at least one jackass somewhere, cutting into the line, causing authorities to respond as tempers flare.

Grocery stores, would open as soon as they could, if able to, usually with the help of a generator. But as good as sign as this was, anything in the store that was refrigerated would be tossed and unsellable. You would be able to buy bottled water as long as supplies lasted. I can tell you that as of today, four days after Ian, all shelves locally are still completely empty of fruit, vegetable, and dairy products. But as supplies come in, they will be gobbled up and hoarded by those afraid it may be too long before they get a chance to buy more. So this supply will remain near zero.

Traffic is a major safety concern, as many intersections no longer having operating traffic signals, with a six lane road intersection. It is a “courtesy” situation, everyone is expected to stop at each light that is not working. Six lanes of north and south traffic intersecting with six lanes of east and west traffic, all trusting each other to be courteous and take turns, until someone just says “fuck it” and ignores the unwritten respect. Then it becomes a free-for-all and then humans are placed in the intersection to direct traffic. This is another reason authorities do not want unnecessary vehicles on the road. But you know society, “I have a right to be on the road.”

There are several local businesses who may have been able to survive with little damage, enough to still be able to be open. Many will work to serve food to first responders and emergency workers. Others will try to prepare foods for locals, unable to cook or even have a place to stay. Unfortunately, there will be those who look at the open sanctuaries as an opportunity for “life as usual – ‘I’m out for a nice dinner” and end up being demeaning and disrespectful because the restaurant may not be able to offer a full meal, service may be slow, because workers still have their own mess to deal with damage wise back at home.

Finally, this is a heavy tourist area. And once the fall rolls around, along with hurricanes, so come all the vacationers, snowbirds, and seasonal homeowners. Things are bad enough for us as locals with the devastation and shortages, but curious or entitled travelers will soon arrive, compounding our problem. On social media pages, you can already see locals emploring everyone to stay away, at least for the the time being. If you need to come down, to check out property, and it must be done personally, fine. Plus, with groceries already at a minimum, gas in short supply, we do not need the thousands and thousands of visitors right at this moment compounding our needs. But the reality is most will come down to pick up their seasonal traditions of eating at coastline restaurants, boating excursions, and many more activities that make this such a great place to live.

But as I experienced with Irma five years ago, and the great everglade brush fire two years later, those here for recreation are not shy expressing their displeasure with having their fun times interrupted by inconvenience, expecting everything to be normal before they arrive. But the truth is, it will be a long time before anything is considered normal. And if that is how they want to spend this season, and they know this upfront, then fine. They have no right to complain how slow recovery is going, or how short supply things are, especially if they are adding to the problem.

Like I said, you can either stay out of the way, help, or add to the dilemma. It does not take long to see who is who.

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