Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

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.

This Is Why I Hate Insurance Companies


Today’s youth, and likely the previous generation has no idea what this device is. Nor, would they ever grasp how slow a communication tool it really was. If you were trying to call a family member, it took you roughly thirty seconds to dial the phone number. If you were trying to be “caller number 9” for a radio contest to win a pair of concert tickets for your favorite band, you basically had no shot, other than hearing a busy signal. A busy signal you ask? What is that? Well that was a beeping noise… oh never mind.

Time. Your time is valuable. My time is valuable. And when it comes to your health, time is valuable. When I was diagnosed with Hodgkin’s Lymphoma, all I kept hearing was how important it was to begin treatment as soon as possible. And yet, I managed to drag the process to get to treatment over three months. As a long term survivor dealing with a multitude of health issues from those very treatments thirty years ago, those involving the cardiac system, are definitely critical when it comes to “time.”

Four months. That is how long it took, four months, to finally make a phone call about a symptom that I was having, and then only because it was a pain in the ass to me. I was tired of it, not concerned about it. I was forty-two, in somewhat decent shape, shoveling snow, mowing the grass, moving heavy equipment at work. It was just an issue of inconvenience.

From the moment that I began any kind of exertion, you could call it a physical act of stress on the body, I would get a tightness across the upper left of my chest, that I would describe best as a severe cramp. And I would call it a cramp, as it went away after approximately a minute. Over those four months, it would happen more frequently, and get more intense, and always go away after that short period of time. And again, I was only forty-two, so I was not worried.

It was the second week of April in 2008, when I called my family doctor of more than two decades, who knows I am not the kind of patient who complains about anything. So this was an unusual thing for me to call her. She would order a nuclear stress test. Just as when I was sent to an “oncologist”, I was clueless what was being sought. She had a hunch, based on my treatment history, that something might be wrong. She made the call to a cardiologist, and got me in for that test the following week, and thirty-six hours later, I was on an operating table having open heart surgery to save my life. I was dying. One of the main arteries going to my heart was blocked 90%, and two other arteries also had blockages. These were not cramps. This was pain. This was my body trying to tell me that something was wrong.

Now, a smart phone, you can make a phone call real quick. In fact, you can pay your bills while you are taking a phone call, while making arrangements for take out, and checking in on a friend. Try doing that with a rotary phone. We are talking a difference from minutes to a half an hour.

If you are a patient, trying to reach a specialist, like a cardiologist, even for “chest pains,” you may as well be that rotary phone. Because the patient is the one making the phone call, there is not really any imminent urgency. After all, the recording says, “if you are experiencing an emergency, call 9-1-1.” So, you are likely to get an appointment several weeks to perhaps even a month or more later.

According to my cardiologist, it was not a question of “if” I was going to die, but “when.” I had already been experiencing the symptom for at least four months (that I can remember). Now, if my doctor had not made the appointment, how likely would it have been for me to survive weeks or even a month or two, just to even get to an appointment with a cardiologist? I do not think my odds would have been that good.

So, as an advocate for long term cancer survivors with health issues, I run into a similar problem, but it is not the patient causing the delays. It is the insurance companies. If you follow my blog, you know I support universal health care. And if anything, the Covid19 crisis has taught us, is that we need to have it. But in the meantime, as we continue to go from one administration trying to improve, trying to dismantle, back and forth, people are losing their lives.

A simple premise, an insurance company only makes money, if it does not pay out. How does an insurance company make money on sick people? They do not. They count on healthy people to make up the difference, those who will not need to use their insurance. But when costs cannot be controlled that way, another idea was created, to “pool” insurance by offering different levels of coverage. In other words, you get coverage that will cover basic needs like check ups and flu shots, stuff that will not break the insurance company banks. It will be cheap because there is not much cost in that. But then you are screwed when something goes wrong and do not have the higher protection. Want the higher protection? Then get a better plan. Oh, that costs too much? Then let’s choose an option that throws “speed bumps” (you know, things that slow you down in a car), that will restrict what testing can be done to quickly and accurately diagnose you. Before getting to any big and expensive test, we will check everything else first, no matter how obvious the symptom is.

I am going to stop that rant right there. Because this is what prompted this post.

A fellow long term survivor is likely experiencing a cardiac emergency. You would not know it by the actions of their insurance company. The cardiologist has been unable to get any pertinent tests done in the four months since the first visit. The insurance company has forced the doctor to exhaust all “electrical” functions of the heart to rule anything out as the source of the pain, yet it still continues to deny the one critical test that would at least confirm or deny a cardiac issue, a simple angiogram to check the vessels.

The heart can function perfectly electrically, but if the blood flow being restricted is a major problem. And worse, if our body is telling us so. I can only hope my fellow survivor is not in the same condition as I was, because otherwise, time is not on their side.

I am sensitive to this type of medical complaint. Whenever I have heard of someone complaining of this similar symptom, long term survivor or not, I have wasted no time in telling them to get to an ER. I am not a doctor, but I am three for three with encouraging a survivor to get help before it was too late, with them ending up with the same emergency open heart surgery.

I do not know what else has to be done to convince everyone that we need universal health coverage. We cannot have pen pushers who follow only a flow chart as to how a patient gets treated. Time is too important to be wasted. Our health care system is broken because it is run by the insurance companies and not the ones that matter most, the doctors. We need to let the doctors dictate the care we get. To Hell with the insurance companies and their billion dollar profits. People are dying because of this greed.

Yes, I am pissed, and scared for my fellow survivor, as they wait for their appeal to be heard, now causing this situation to reach five months, and that is just even to get the test approved. It still needs to be done, and if something is wrong, then fixed. Time. It is running out.

The Scariest Time Of My Life


Nobody told me what to expect.

I was literally on an operating table less than twelve hours after being told I was dying. I was still under the influence of anesthesia from the procedure that discovered a lethal blockage of my heart. As the fog cleared, I was being transported here for this pre-op test, there for this pre-op test, and then being hounded that I needed to eat because I was going to be fasting in less than two hours in preparation for the emergency bypass.

There were two things on my mind. I wanted to at least talk to my daughters that night. And the final thing that I needed to do, just prior to the surgery, a visit to the hospital. Over the evening, there was more prepping, and eventually around 4am, an orderly would transport me downstairs to the surgery suit. That is all I knew.

Today, because of Covid19 issues, caregivers are usually no longer allowed even in the hospital until a patient is moved to a private room, to limit exposure. A patient coming out of surgery, wakes up without a loved one in sight, a calming person in the panic of becoming coherent as to what has happened. But back in 2008, that was not the case.

Up until my bypass, I had gone through four other surgeries. And though someone was by my side when I came to from the anesthesia, I was not in any kind of state of confusion. I have witnessed my daughters go through this when they had tubes put into their ears, a minor procedure, but they were asleep for it, and woke up somewhere else after it was done. Clearly it was upsetting.

I have my hands on the surgical report. Quite fascinating actually. A truly historic tail of what was done to save my life. But there was one thing that I had not been prepared for. No one had told me. And no one was around me that I recognized when I came to. And then the panic hit me, in a very bad way. That much I do remember.

I woke up in the intensive care unit, obviously surviving my bypass surgery. It was much different than the last room I remembered, strapped to an operating table. It was a dark room, but there were a lot of lights flashing all around me. I felt as if my movements were restricted, even barely able to turn my head. What the Hell had happened to me? Then I realized I was unable to talk. Not for lack of trying. Something was physically preventing me from talking. I saw no one.

My heart rate must have skyrocketed at that point, because someone came rushing in. But it was not anyone I recognized. “Please someone explain what happened to me,” is all I could think, since I could not ask it. And then I heard a voice, “my name is Joe, I am your nurse. You are okay Paul. The surgery is done, you are now recovering, you made it.”

He must not have been convincing enough. This was a stranger. Where was someone I knew, someone who knew me. I wanted answers. As my eyes gained focus, I could see a lot more than lights. I saw machines, many of them. There were hoses and cables. I began to process, they were all connected to me. What the Hell happened? Nobody is telling me what happened. Nobody told me this could happen.

I could see Joe had a syringe in his hand and he was inserting it into my IV line, and soon I had fallen asleep again. The whole infamiliarity of the room, not recognizing anyone, was sending me into a full blown panic attack. I am not sure how long I was out. When I woke up, Joe was still there. Only now there was another nurse, her name was Jackie.

Jackie was young, very soft spoken. She could see my eyes scanning the room, still unable to turn my head. And again my heart rate began to accelerate, now not just from confusing, but from anger. I wanted answers “what the Hell happened to me.” Jackie could see I was panicked. Not sure how she knew what was in my mind, though I am sure she had been in this situation before. “It’s just Joe and I. But we are here. You are fine. You did well with the surgery. I need you to calm down, you are fine. You have a breathing tube, and there are other tubes and wires doing what they are supposed to do, so you are not able to move all that well right now, but you are doing great.”

Again, my eyes raced back and forth, scanning the room for others. Jackie knew I was looking for a familiar face. “There’s no one here.”

Did this mean no one else knows if I am dead or alive? Just me, Jackie, and Joe? What the Hell! Nobody told me about this moment or what it would be like, or that I would be doing it alone. And I should not have had to.

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