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.