They Are Just Words
I had been looking so forward to this day. A gauntlet had been laid down by myself, to act, and to act hard. My previous doctor appointment resulted in a stern warning about one of the many health issues I struggle with, as a result of my cancer treatment history, the measurement of my A1C, or the measure of hemoglobin to determine diabetes. By the wonders of medical science, this measures your blood sugars over the prior three months, in other words, don’t even think about just not eating candy and drinking soda a couple days before a blood test. The A1C rats you out. I discovered that several years ago, when my doctor made me aware as I bragged about my low blood sugar test, when she followed up with, “but your A1C…”
For the last several years, my A1C has been on a constant increase. Even with the intervention using a certain prescription, the increase continued. I was diagnosed with a condition called “insulin resistance.” My last doctor appointment, my level reached a new high, and a dangerous high, 9.0. I was on the verge of needing stronger intervention, but was resistant to anything injectable, and a newer medicine that was being recommended, of course, was not an affordable option. Other medicines that were suggested to be considered to lower A1C, worked by suppressing appetite, hence, losing weight, which in theory should lower the A1C. Now I was on to something. Those medicines would have no impact on me, as I have not had an appetite since my heart bypass surgery back in 2008. That meant, I was going to have to do this on my own.
For the last several years, my A1C has been increasing. I already at a low sugar, low carb, low cholesterol, low fat, low taste diet. Over the last nearly two years, I have been consistent with exercise, nothing heart throbbing, but exercise nonetheless. And no success with weight loss of any substance. Three months ago, I committed to near 0 sugar, near 0 carb, near 0 cholesterol, just as much protein as I can take, which is not hard considering my distaste for most vegetables. I finally kicked the soda habit. I quit eating bread and pasta. But I also made a request to my doctor. I have a friend who was taking a 3rd dose of the same medicine for A1C reduction that I was taking (I was only taking 2 doses), and they had experienced weight loss. I was told to “go for it.” With this, I was on a “make or break” mission. If after three months, my A1C had not lowered, regardless of my weight, yes, I was just going to throw my hands up and surrender. I used a personal scale, not for accurate weight, but just to observe any movement. Then came the moment of truth.
At the doctor’s office, following my bloodwork, my first stop was on the scale. Since my April visit, my official weight was 223 pounds. I was now not only below the weight of my bypass in 2008, but below 210 for the first time since early 2005. There was only one thing left to do, two actually. I was there for my cardiology appointment, so I had my usual echo to find out how my bypass (2008), stent (2019), and aortic valve (2021) were doing. There I would find out about my A1C. All three of the heart surgeries were still looking pretty good. Then came the news, my A1C had dropped 1.5 down to 7.5. Still considered high and in the diabetic range, but for the first time in years, the number had decreased. IT WORKED! Of course, my plan is to continue what I have done and has worked, as new numbers will be drawn in three months. Onward I go.
Then my heart said, “hold my beer,” a reference to the meme for when things look bad, but here comes something worse. Another doctor looking over my echo, noticed something that even I had overlooked, obviously too excited by the other results and my lower A1C.
There is another measurement for the heart, called “ejection fraction.” Ejection fraction simply put, is how much blood gets pumped by your heart. It is measured in percentage, but the higher the number is not necessarily a good thing. The best range for EF is between 55% and 70%. I have no knowledge of the higher range, but from what I can tell, 90% or 100% which is normally good on a school exam is good, not so for the heart. So I am going to focus on lower numbers since that is my new issue. But before I do that, I need to introduce another term, “congestive heart failure”, or abbreviated as CHF. That sounds bad, right? It is, but the question is, is it dire?
With CHF, the blood is not being pumped well enough. And up to this point, of all things I have had done to, and discussed about my heart, CHF was not one of them. Well… I had not realized it, but a few years ago, following my stent placement, a new diagnosis was listed. You guessed it, congestive heart failure. You want to talk about a huge pit in the stomach? I thought cancer was a death sentence? CHF definitely is, at least for some, those that have options that is, which I do not, but will get to that in a bit.
When I realized I had been diagnosed with CHF, I expressed in “WTF” to my doctor, who told me that it was not a big deal as my EF was still good, that simply saying that I had CHF was just saying my heart was not perfect or perfectly working as a normal healthy heart. Okay, while having the diagnosis did not feel good, I trusted my doctor was telling me that I was still in decent shape.
Side note, just a reminder, all of my heart issues are attributed to my treatments for Hodgkin’s Lymphoma thirty-five years ago. The radiation damage is progressive, will always progress, never get better. Things that can be fixed, have been fixed. There are others on a “watch and see” basis. A better solution for my heart, would require a heart transplant, which I will never be eligible for, or even if I was, likely would not survive. Now I think you have everything to follow along.
While my A1C had been climbing all these years, it turns out my EF had slowly been declining by one or two points every year. Again, nothing major, and still within the range of working efficiently enough. And just as with my other issues, due to the treatment damage, it really came as no surprise. That is, until this appointment. My EF has plummeted 10 points down to 40% since my echo last year. This is a dramatic drop and needless to say, I am super frustrated, as once again, I felt I had been doing everything right. I got my weight down. I got my A1C down. All my other blood tests looked great. My exercise is consistent. But an EF of 40%, while not horrible, is not great either.
The Cleveland Clinic, the “star” of those of us with irradiated hearts, lists a normal EF range to be between 50-70%, with mildly reduced EF between 41-49%. I am now 40%, putting me in the category of moderately reduced, in the range between 30-40% EF. There is only one other category, severely reduced, which of course is 29% and below. This is when the really bad stuff is likely to happen. So far, I have no symptoms reflecting my lowered EF, or that I have at least noticed before researching and writing this. My appointment with my cardiologist, I did not mention any symptoms anyway, a problem for me since I do not usually notice symptoms until it is too late. So he did not seem concerned by this drop. But my other doctors did raise a concern.
The Cleveland Clinic does list some symptoms, that in retrospect, I can say that I have, just as usual, I have not paid attention to them. Fatigue, I deal with every day, always have, is nothing new. Heart palpitations, have always had them. Shortness of breath has always been a tricky thing for me to keep straight because I also suffer from restricted breathing, another complication from treatments, and it is difficult for me to tell them apart, but there is clearly a difference. Water retention in my abdomen or feet, which in spite of a diuretic, I am unable to overcome. As of late, this diuretic has only been working 25% of the time. Not to mention I take a medicine for my heart, which is known to cause additional fluid retention. But I have had this for years as well, with my EF in the upper 50’s.
There is a new symptom though, that has become noticed, though no explanation or correlation until I started writing this post. Cognitive impact. At the beginning of the month, I wrote a post called “5 Second Paul,” referencing a noticeable change with my short term memory, confusion.
I had received a call from my cardiologist a few days ago. He had heard that I was concerned about this updated issue. He did his best to assure me that everything was good, including with another unresolved issue with my heart, something called a “left bundle branch block,” that occurred following my aortic valve replacement two years ago. That is for a different post.
The problem is, I have personal experience and knowledge with EF problems. And now it becomes a matter of how quickly this issue progresses, as my other issues have progressed over the years, some slow, some rapidly. When these issues have hit the severe stage, there was no mistaking symptoms, and interventions were required. Unfortunately, for me, EF will leave me with little to no options to treat or reverse. Worse, I have seen what happens.
With all that has happened with my heart, three surgeries so far, and more complications, while there are a few possible and temporary solutions, a heart transplant really will be the only option for me. Unfortunately, a heart transplant is not an option for long term Hodgkin’s survivors like me, exposed to the levels of radiation for treatment that we were. The risks of complications from such a surgery, from rejecting to death, is dramatically increased, making us nearly impossible for a candidate for this level of intervention. I am only aware of two other survivors who had even come close to qualifying.
So, just like I have done for other conditions, I wait. I will have my next echo in a year. By then, I expect to have lost more weight. I expect my A1C to lower additionally. And I will continue to exercise. Do all I can do. The next result will likely determine the next phase of my survivorship. It just depends on how quickly.
Paul's Heart 