Paul's Heart

Life As A Dad, And A Survivor

Only Time Will Tell

From the day I was diagnosed with Hodgkin’s Lymphoma back in November of 1988, I firmly believe, the physiology of how my body worked changed forever. Surgeries removed organs and other parts of my body as part of the diagnostic and staging procedures, complicating my body’s day to day survival. Then my body was subjected to all kinds of toxicities from extreme dosages of ionized radiation to poisonous chemotherapy, all in the trade off for survival from cancer, and changing more of my body. And then, as time passed, decades in fact of survivorship, late developing side effects from my treatments now have the largest impact on my health.

And then, there have been all the major surgeries and trauma events that have occurred. My body is always under some sort of strain.

For the last fifteen years, I have been closely monitored by doctors who know and understand what late effects from cancer treatments are about. I get followed up with bloodwork, x-rays, scans, and even procedures to make sure that everything is still on the path of survivorship. Occasionally, there are things that do raise a concern, and when possible, they are dealt with or managed.

Bloodwork is a valuable tool, in that numbers, whether too high or too low, can indicate a problem and the need to investigate further. Some of those blood tests may just be a wake-up call, that something needs to change. My thyroid took a major hit from radiation damage. My blood is monitored annually, my thyroid scanned for polyps or tumors, and medication is taken. I am currently at my highest dose since I began taking it long ago.

Cholesterol is another bad word around me, and I kind of get a double whammy. High cholesterol runs in my family history. But the fact that my liver took a hit from my chemo, makes treating my high cholesterol complicated, as even medications struggle to keep levels to a safe range. I already eat a low cholesterol diet, and exercise as best as I can, but it often feels like I am going up a river in a canoe without paddles.

Recently, another blood level has reached an unhealthy level, and it is just as confusing because between my activity lifestyle and my diet, below average in carbs and sugars consumption, my A1C, the test that measures your sugar levels over the last three months and the answer to cheating for the simpler blood sugar test, has reached an all time high for me, and well into the diabetic range. My A1C has been on the constant rise, in spite of my diet, in spite of my exercise, in spite of being on medication. While my doctors try to figure out what is going on with this issue, I have my own suspicions, of course, just more late side effects leading me to be insulin resistant. My current weight, which has been the same for as long as I can remember, has not decreased at all, in spite of my diet and exercise, but of course is also associated with the higher A1C. My inability to lose any, did I say “ANY” weight has always baffled me.

I know stress also has played a major role.

My exercise regimen, not anything that would lead me to a physique like Lou Ferrigno, simply a large amount of walking, and some upper body strengthening, are meant to either get me into shape from a recent surgery or procedure, or to prepare my body for the next surgery or procedure. I always thought I was doing the right thing. A new situation has me wondering.

Recently, I cracked a rib on my right side, with a casual motion sitting on a chair. The susceptibility from decreased bone density because of my cancer treatments, is responsible for this easier injury to occur. While I am able to function, my arms and legs work, I have had to stop exercising because of the soreness to my rib cage. After one week, and note – nothing after nearly two years since my last heart surgery, I have dropped four pounds. But that is not all. An obvious physical symptom to spot with the naked eye, swelling in my ankles is also down. I have been involved in medicine now for a decade and a half, and can hypothesize, there may be something else at work. And given the history of the health of my body, anything is possible.

As I said, I have been baffled why I have not been able to drop weight all these years of exercising. But as I recover or give myself a rest while my rib heals, I have not been able to exercise. And given my last A1C blood result, and inability to afford the new diabetes medication my doctor wants me to take, I am resorting to the same method I do every time I get confronted with a health problem, major denial and I will prove them wrong. So, two months ago, when I got this news, I made the change to my diet, eliminating 75-90% of any of my carbs and sugars. It is still two months until I will have my A1C checked again, but in the two months I have been doing this, no weight loss.

But after one week, resting from an injury, I got results? Now I know, previously, when I have had to skip exercise for a few days, I recall the loss of swelling, and maybe shedding a pound or two, only to gain everything back, including the swelling, once I returned back to exercising. Again, I am not built like a body builder, and as much as I would love to lean on the theory “muscle weighs more than fat,” something more sinister may be at work her.

Congestive Heart Failure. Do not panic. I know I did the first time I saw it on my chart, which oddly enough did not occur until thirteen years after my first heart surgery back in 2008. But just before my aortic valve was replaced two Octobers ago, there it was on my chart, at least me noticing for the first time, the words, “congestive heart failure.” The term refers to the hearts ability to pump blood and becoming progressively more difficult. The fact is, many heart patients are likely to be considered in CHF.

But my diagnosis of CHF actually makes sense. Though honestly, I do not feel any differently, and actually have been impressed with my exercising and my breathing while doing it. But if the heart is not pumping correctly or maximally, it can cause fluid retention (also known as swelling and weight gain) and other issues. By exercising, I have been making my heart work harder, pump harder. But the time I have taken off to recover from my injury, my ankle swelling has gone down, and I lost a few pounds.

It will be two months before my blood gets tested for my A1C, and will see if my Draconian diet change had any impact. But I am going to refrain from exercising another week, just to see if my current conditions continue, and just as importantly, see if I lose any further weight. Yes, it is a “catch 22”, but if I lose more weight, that is a very important symptom for my cardiologist to be aware of with my history.

If you are someone who has never seen the inside of a hospital, as a patient that is, and have had nothing more than routine annual exams, I am so happy for you.

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2 thoughts on “Only Time Will Tell

  1. Tricia Henry-Roos's avatarTricia Henry-Roos on said:

    I can’t imagine a life where I couldn’t tell you how each hospital in my smells because each one has their own scent. Your story is so similar to mine. Mine was kicked off with a Hodgkins diagnosis at age 17 in 1996.

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