Paul's Heart

Life As A Dad, And A Survivor

If At First…

It is hard to know if expressions that we were once told as children still live on. But one that has always stuck with me, and I definitely used with my daughters, “if at first you don’t succeed, try, try again.” It applies to many things that have been dealt with in our personal lives, as well as in the world in general. Perhaps none so important as the fight to end the Covid19 crisis.

If there is one thing that is most frustrating for me, is that there seems to be no patience, there has been none from the start, in dealing with a near completely unknown virus, one that will clearly go down in history as one of the most lethal, when you go by actual lives lost instead of the falsely encouraging low percentage rate. It was obvious, we had no way of knowing much of anything about the disease, how to protect or prevent the spread, and no plan.

What we did have, was a lot of politically misguided input, which in all my years of dealing with medical issues, I have never had one issue of conflicting politics interfere with my care. But here it was. If you dared to attack the leadership, many would blame the scientists for sabotaging the leadership. Now, I cannot speak for everyone, but I know of all the scientists that I know, not one has ever worked towards anything other than a solution to a problem. The end result is a huge score, their name attached. One such critical example, Jonas Salk, you may not know his name, but you can thank him that we do not see Polio anymore.

But just as the vaccine for polio, dealing with Covid19, from diagnostics, to preventions, to treatments, to vaccines, the process is the same, trial and error, try, try again. Though it can happen, it is highly unlikely that an answer to any complex problem can be discovered right on the first go. Because of the politics of Covid19 however, scientists were immediately discredited for the very process that we have relied on for centuries for our survival. It gave those whose political stance was stronger than concern for the well-being of fellow human beings, the opportunity to say, “see, you are wrong. You don’t know what you are doing and until you do, I am not going to do what you say because you are just trying to control me.”

As for me, I cannot afford politics with my health. I have been a benefactor of science so many times, several of those critical. I am thankful for processes, protocols, and regulations to make sure that things are as safe as can be. Notice, I did not say, “to make sure things are perfect.” I do not believe that we can have 100% success in most things. Yes, it is nice if we can achieve that, but that cannot be the goal, especially when we are dealing with the Covid19 crisis.

Almost a year and half later, we are at an encouraging position, we are dealing with several vaccines which show promise, with a success rate better than any other vaccines created. To be clear, I am not an anti-vaxxer, but I do believe in processes. As I have mentioned previously, I support the vaccines that have been given emergency use authorizations. And I do that, because I understand what that phrase means. It means that research has been done, and it current results show that it will be successful, and the crisis is bad enough, that the risk of not using the vaccine, is less than letting the virus burn through the population. Dealing with multiple late effects from my cancer treatments, I have these considerations on multiple occasions.

I will get the vaccine, eventually. I do not doubt its success, that is not the issue. The fact that it has not been “approved” is not an issue either. To get the approval, all that means is that all of the other studies must be completed, as well as the other processes. No, my unique health issues, had not been researched when it came to the emergency use authorization. So there was no studies, no data, no idea, how my body would react to the vaccine, me having no spleen, and multiple other complications. Would the vaccine draw down my immunity further making me susceptible to other illnesses? Would the vaccine have any impact on any of my health issues pertaining to my heart or lungs? So far, research had only been done on healthy people. Science.

Then there is this, and this is something I do know about the science of me. The importance of vaccines is to get the body to make antibodies. I learned several years ago, following my first heart surgery, my body does not make antibodies, or at least without boosters. This is a fact. There are two vaccines that I have had to have multiple boosters to produce antibodies. I know how my body works. So here is the problem.

There are no studies on boosters (yet), especially if they would be safe. There is no protocol. All I can relate is anectdotal from stories I have heard from other survivors of Hodgkin’s Lymphoma like me. Several have had Covid19. Many have gotten the vaccine. Some have had both. There are those still dealing with lasting effects from Covid19. I know of some who had severe reactions to the vaccine, and some who had none. What to do? What to do?

Fortunately, science is doing what it needs to do, through trial and error, Big Pharm is at the stage now that they are looking at boosters, and feel that boosters will be helpful in dealing especially with the variants. But again, the is not based on people with health like mine. But science will get there. It just takes time. It is not perfect. “If at first, you don’t succeed, try, try again.”

I do have one encouraging hope, in that because I had what is considered a blood cancer, while I wait for the scientists to catch up, the Leukemia and Lymphoma Society has not waited, and is running their own studies on survivors of blood cancers such as Hodgkin’s. Fellow survivors are reporting their data to the LLS about their exposure to the virus, the vaccines, whether their bodies have produced antibodies, all of the information necessary to form an opinion on what to do with patients like me.

It is a hard balance, personally speaking. I hear my doctors tell me, “Paul, get the vaccine, if anything at least it has the potential to make the effects less severe.” And they are likely right. Unfortunately 31 years ago, I had been given an option as well, based on limited knowledge, other than “it would work.” Do not get me wrong, I am grateful for my 31 years of survivorship, and I likely still would have opted for the treatments that saved my life in spite of the potential for side effects. But my life would have been a bit more easy, had the research been done, as to what the side effects and risks of my treatments would have been, more importantly, how to handle them if and when they would appear.

And that is my only hesitancy at this point. I will get a vaccine, not sure which one yet, but I will get it. But I am following, and trusting the science. Honestly, in my lifetime, I have never seen a process or crisis, like this, and I never want to again. But I do believe we are doing the best we can.

Thank You Nurses

Today is National Nurses Day. In fact, the entire week, we honor the caregivers who follow the orders given by the doctors in our care, make sure that we follow those orders, and with all the care in their heart. In fact, for the last year, their career choice has exposed and challenged them to no levels ever expected when the first stepped foot inside of med school.

I often brag of the fact that in my fifty-five years of age, that I have had only three primary care doctors, my current one going on over thirty years. And any specialists I see, I am just as loyal to them. These doctors know me inside and out. I do not have to waste time, reciting my health history every time, because of a new doctor I have to see. The same can be said for the nurses that have cared for me.

I remember nearly every one of my nurses in my adulthood, and most of my childhood. My family doctor nurses, my oncology nurse (an irreplaceable team member for my cancer), and the multiple nurses that have taken care of me during each and every one of my health crisis and surgeries. I remember them all by name, and what they did for me.

Today, many of my friends in my circle are nurses.

The challenges that nurses face, I can only understate, because I truly have no idea what is a part of their average day, only what it took to care for me and my current issue. I know that in the hospital environment, they often worked at minimum, a twelve hour shift, multiple days in a row. I know that regardless if in a clinic or office setting, or in the hospitals, nurses suffer losses of those that they care for, and are needed to continue on with their care for others.

I know that many of these heroes are selfless caregivers, prioritizing their careers over their families. Most, would not do anything else with their lives.

My last interaction with nurses occurred earlier this year, and I had to deal with three of them. All of them were nurses less than three years, two of them, just over a year. Which means, in just their short career, they had to work through one of the worst crisis in over a hundred years. Welcome to nursing.

As I am prone to do, I love to talk to my nurses, because it gives me an opportunity to let them know, that I appreciate everything that they do for me (as a frequent patient especially). All three nurses were young, as I said, but they had no issue sharing their grief and sorrow at the things that they had seen over the last year, not only wishing that things had gone differently, but that others would have taken it more seriously. They did not complain about the exposure risks caring for those who denied the virus as serious. They did their job. But there is not doubt, the impact this crisis has already had on their short careers. They have already seen in one year, suffering and death that most nurses would likely experience in their entire career. And yet, these nurses have no intention of giving up. And that is what makes nurses so special. They have a gift, to care. And they do it well.

I will come across many more nurses in my lifetime of that I am sure. And it will not be just May 6th every year that I make sure that they know that I appreciate them, but every day of the year.

Damn S.O.B.!

No, I am not cursing anyone out. I could. But I am not. Instead, I am frustrated by a health condition that I have had for many years, related to my treatments for Hodgkin’s Lymphoma decades ago, shortness of breath, or what we call in short “SOB.” When one of my fellow survivors mentions “SOB,” we often do a double take just to make sure what they are talking about.

To give you the sensation of what it is like to have SOB, imagine you went for a jog or run and completed it. Chances are likely that you are panting, trying to catch your breath. SOB, at least in my case, occurs within the most minimal activity: tying my shoes, a short walk up an incline, carrying groceries, even walking from the kitchen table to the refrigerator. Besides the actual exertion levels, the main difference between the two situations, you expect to have to catch your breath after an extreme physical act, not after something so minimal.

I have a couple of possible causes and conditions that do not make it any easier on me. Weather happens to play a role in that extreme temperatures such as high heat and humidity or cold and blustery can trigger one of my attacks.

Stress also has an impact on this condition, because if I am already stressed out, the effects are quadrupled and recovery is three times as long. So, in the heat and humid conditions, I need to get into air conditioning as soon as possible, and when it is cold, I need to get into temperatures in the seventies.

Physiologically, there are also reasons I have SOB. I have a reduced lung capacity from my radiation treatments doing long term damage over the decades, with the lower left left of my lung referred to as “dead.” The more prominent cause however, is likely my heart.

Back in 2008, when my cardiologist realized I had a fatal condition involving my heart, he was unaware of the cause and the cumulative and collateral damage, cancer treatment late effects. In fact, what was originally supposed to be an emergency triple bypass involving two of the three major arteries of the heart, the surgeon opted to let the other artery alone because it was not blocked enough, leaving me only to undergo a double bypass. The problem is, that unrepaired artery would continue to get worse, and need surgery in 2019, but that is another story.

The thing is, had my doctors been more aware of my treatment history, other studies would have been done as well, including giving more concern to the artery that they left alone. The actual heart had been impacted as well, but not until it was studied later, did doctors realize there were more problems. But now, because of the risks involved with Hodgkin’s survivors and second heart surgeries (major risks), any corrective action taken, is only done so when it has to be. Think of it as a ticking time bomb.

In other words, it has to be bad enough that the risk of the surgery is less than the risk of the condition.

Further heart studies soon after my heart surgery revealed that three of my heart valves have been impacted over time from my treatments, aortic, mitral, and tricuspid. They are actually listed in the order of the severity of damage. What I find odd, is they were all exposed to the same amounts of treatments, yet one is coming close to finally needing some sort of action, the others, are just continuing to gradually progress.

The valves are often described as “leaflets” on my reports. And after “leaflets”, comes the descriptions and conditions, calcified and stenosis. These can be seen on the studies. The fact is, it can also be heard. Evidently, I have a very strong heart murmur, which always draws a crowd when I am in a hospital, giving anyone nearby the opportunity to hear a well defined murmur. I should charge admission for this.

Anyway, this “calcification” is actually a stiffening of the leaf of the valve. This can allow the blood to leak back into the chamber of the heart it came from, instead of where it was meant to go. And because of that, that means your heart has to work harder, and your body is not getting the oxygenated blood that it needs. The result, a shortness of breath, called dyspnea.

It does not take much to trigger these episodes of SOB for me. And as I am aware of what does, I do my best to either avoid or mitigate them. And if by some chance, an attack does come on, my response must be quick to minimize the recovery time. Hot and cold conditions each take their own different times to recover, though the coldness does take longer to recover from.

I am encouraged to exercise, and I do try. But I have my limitations, not just physically, but thanks to Covid19, accessibility. I cannot get to a gym (indoors) to use a treadmill even for the lightest of exercise, walking. The hotter months are now coming, which means even morning or evening walks will not provide me any comfort.

It has been this way for years now. I know the time is coming. And I am hoping as it does, technology continues to advance, to make any surgery less risky, and less invasive. I am not sure when it will need to be done, it is not a question of if.

Frustrating to experience? Yes. But with so many long term survivors out there who have no idea what is happening to their bodies, because they have no follow up care, I am lucky if you want to call me that. At least I know my SOB is not in my head.

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