Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

02 May 2021

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.

Posted in Cancer, Education, Family and Friends, Side Effects, The Heart | Leave a comment
27 Apr 2021

Playing Semantics – Sometimes It Matters


Do you remember, when as I child your parent would scold you, “did I say you could do that?”, and perhaps you might have responded with “you didn’t say that I couldn’t.” Semantics. We knew the right answer, and it was not our response.

The definition of semantics is a bit complex, because it all depends on what type of semantics that you are talking about. There are formal, lexical, and conceptual. Simply put, formal semantics is basically a reference or implication.

Two more definitions, “optional” and “recommended.” I am not going any more in depth than Google because we all know what these words mean. Optional, of course refers to being able to choose, or not. Recommended means advised or suggested. Now, you can have the “option” whether or not to follow a recommendation, but something being “optional” versus “recommended” are not the same at all, even though the “implication” is being pushed on a recipient.

What the Hell am I talking about? Well, obviously, with the mask on the cover of this post, we had something occur last week where I live. Our local representatives had chosen to let a “mask” mandate expire without renewal, a move cheered by many, still scoffed at as “never should have happened by others.” But to the rest of the public, this decision will have an impact.

We are all still in the middle of this pandemic. Yes, there are still plenty of naysayers out there still even claiming this is not real. And the truth is, our daily numbers are just as high as last year when the mandate was put in place. Of course, this opens a door for those against to masks to cry out, “see! The mask mandate did not help!” Wrong. With not enough people wearing the mask, it was not expected that 100% of the people would wear masks, but more needed to wear them, the concept was simple. It is as much the difference of trying to put out a brush fire with a garden hose versus an actual fire hose. There is no chance.

Yet, here we are. We are more than double the daily cases we had last year at this time, when the mask mandate was put in place. We are approaching a staggering 33 million cases in the US alone, and will easily break 600,000 dead fairly soon. Yet the one thing we can do, to at least help, is wear a mask.

Yes, I get it. It has been over a year we have been asked to sacrifice, and many have done that. But, over 587,000 have paid the ultimate sacrifice.

The only thing quicker than a trip to the bathroom after eating at Taco Bell, was the actions of our local community once the mask mandate expired. Social distancing stickers on the floor, gone. Signage reminding of mitigation efforts, gone. Masks, at least a 75% reduction in usage. Remember, we are double in cases where we were last year at this time, and we are just under where the numbers would be during the summer, before the huge spike kicked in. We are far from this being over, in spite of vaccines being administered. Vaccines are only part of the plan. There are still too many in denial, too many fighting common sense. And only time will tell. But if yesterday is any indication of how ignorant and selfish the population has become to Covid19, it is going to be bad.

I need to offer a couple of qualifications before anyone tries to argue with me. I get my information from the doctors that handle my care, not the media, not from friends. I do not live in fear, afraid to live my life. To the contrary, I have lived through so many virus outbreaks, and because we knew how to handle them, I was able to live “with” the conditions. And that has been the difference with Covid19. We had no idea what we were dealing with in the beginning. Now we do, to a degree. Mistakes may still happen as experts try to adjust from the constantly changing developments. But for the last eight months, I have made the adjustments to carry on in the most important areas of my life that matter most to me, including seeing my children. No, I am not living in fear. I am following guidelines that are recommended because they make sense, and they work.

So, as I mentioned, yesterday, I went into a restaurant to pick up some takeout as I had done previously, before the mandate had expired. Before last Tuesday, it was not uncommon, in spite of the local mandate, that there were some people who “opted” or chose not to wear a mask. Honestly, the mask was a toothless tiger, in that enforcing the requirement was pretty much non-existent with a major business flaunting his rebellion against the mandate, scoffing at any measure of safety against Covid19. For me, I know you will not get 100% of the people on the same page, but at least I felt comfortable enough, to support my local businesses either getting curbside pickup or take-out.

Then Tuesday hit. No more local mask mandate. I walked into one of my favorite places to pick up my dinner for the night. And as I often do, as I entered, I scan the room, so that I know where inside I need to try to avoid. It was not overly crowded inside. But I saw no one wearing a mask, not one person. Okay, understandable, they were all eating. Then I saw the staff. Not one staff member was wearing a mask either.

I was beginning to feel uncomfortable, that I actually thought about turning around and thinking of a plan B for dinner. But I had confidence knowing that I had eaten food from here before, and it was fine. But it was a reaction that I got, that I had not experienced in over thirty years. I was being glared at by a waiter because I was wearing a mask. “Oh, great, you are one of those,” I imagined the waiter thinking. Their eyebrows were dropped, so I definitely had a feeling from them of disgust.

This business had been one who had been honoring the mandate previously, and likely reluctantly. Now, throwing away any concern for clients, they saw the face mask as something that would have a negative impact on their business. They want clients who are ready to forget nearly six hundred thousand dead Americans. Covid19 never happened. Stop reminding them it did.

Having gotten food from the restaurant several times before, because I felt with my vulnerabilities, I could do so without the likelihood of contracting Covid19, that is no longer the case. While I am sure the manager would take exception to my claim, his employees are underneath him, and they are a reflection of the business.

As I have always stated, I am one of the vulnerable. I have also delayed getting the vaccine, because I believe in research, and more needs to be done before I get the vaccine. I now know of one other fellow survivor like myself, who got the vaccine, and a couple weeks later, tested positive for Covid19. The decision I make wearing a mask, or coming into a business imposes on no one. I still have my freedom, a frequent false war cry of anyone asked to help do the right thing, to care for others. And we have learned so much more from a year ago of how to deal with Covid19. There is clearly a lot more to learn. But as we advance, certain recommendations are being made, others are being relaxed. Clearly, had there been a plan last January or February, we would not be in this situation that we are today.

A headline reads today, President Biden to announce easing of outdoor mask wearing recommendations. You see? Mask recommendations were not a mistake, they were using recommendations to mitigate, and control the spread. Some of us helped, some of us hindered, and at times, quite rudely.

Just as I had to through SARS, bird flu, swine flu, and everything else, I learned to live with the risks, only after the recommendations were made. And that was my option, my choice. There is a difference. That is not living in fear. That is not a loss of freedom. That is concern for myself and those around me.

Posted in Bullying, Education, Family and Friends, Inspired By..., Politics, Side Effects, The Heart | Leave a comment
21 Apr 2021

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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment

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