The Irish Medical Times - Beating the odds, why does my body defy expectations?
We all know someone who spent the pandemic with their mask on their chin, never feeling the tender touch of Covid-19 grip their throat. What about people defying medical expectation, achieving feats beyond their given circumstances? What are these ‘outliers’ secrets?
I’ll offer myself as Subject One. My medical records read like the collective history of a small hospital after a nuclear event. I am a multiple cancer survivor, living with chemo-induced heart failure and radiation-induced lung damage, sitting somewhere shy of fifty.
Since sliding dramatically into heart failure six years ago, I have walked a 26.2 mile marathon from Killiney to Malahide, cycled 100km at night from Windsor to London and back, and most recently cycled 247km from Dublin to Galway over a week. My exertion ability shows a definite pattern I can’t attribute exclusively to luck.
My Ejection Fraction (how well my heart pumps) trends around 30-35%. My lungs Forced Vital Capacity and Forced Expiratory Volume (how well my lungs work) are at 66-68%. Yet, I comfortably complete these hours long endurance events, with luckily (so far) no further organ deterioration.
I seem to be able to hold my own - but I have no idea why.
Aside from the brazen flex, why am I telling you all this?
For many reasons: Fellow heart patients with similar EFs (or better than mine) ask me how I can cycle 35km every day for a week and they can't do 15 minutes. Healthy people assure me my heart complaint must be mild/fixed because they know people with "real" heart issues and what I did is impossible with compromised heart function (for the record, incurable heart failure is as real a diagnosis as it gets). Their assurance comes from a good place, everyone with a phone is a part time doctor, nutritionist, and exercise expert - I know I am!
But I don’t want my actions to mislead others by implying everyone with my diagnosis could do the same. We are all weird and wonderful in different ways, I want to find out the root of my weirdness. For the record, I also have plenty of weird traits that don’t bestow me with an advantage which I chose not to write about in an effort to be kind to myself.
Medicine often examines 'risk factors' and why someone can't do something. I’m more interested in why someone CAN do something and learn from that. Perhaps something about the person, or their actions (past or present), translates to a 'protective factor' which could help others.
Despite appearances, I am not unaffected by my heart condition - I tire easily, take stairs slowly, avoid cycling hills, and can't run. Sometimes I feel ectopic beats/palpitations/high heart rates. In extreme weather, my ankles swell and my breathing is laboured. If I skip my morning meds by the afternoon I feel unwell. Last summer my daughter developed a small cold, I picked it up and ended up in hospital for 5 days with pneumonia. The evidence is there that I am more vulnerable and frail than your average 48 year old, yet, I can manage some activities that a "normal" person may find a challenge.
Medical intervention and supervision are a huge part of my stability. Progressive dilated cardiomyopathy has no cure, medication lets me live well, though I’m not on optimal doses due to very low blood pressure.
Therefore, I think there is more to my resilience than just medications, which leads me to the world of protective genes. Many moons ago, high level genetic testing revealed some interesting traits, such as genetic aversion to leprosy (surely we all have that, I hope!) and the ‘sprinters gene’ a predisposition to fast twitch muscle fibres.
I tend not to sprint (my reading glasses keep falling off) but the gene is also associated with increased strength and fast recovery. Could my genotype explain my exertion endurance despite chronic illness?
This gene may explain my overall persistent existence, despite nature’s many attempts to take me down. From a quick search it appears Stanford and Kings College are researching this gene in relation to longevity, it’s an area of ongoing discovery.
This might be my aversion to leprosy talking, but it sounds like a PhD topic: studying if the ACTN3 sprinters gene can be reimagined as a resilience gene and used to help patients. The concept of identifying genetic markers for resilience is gaining traction in research with studies exploring telomeres and genetic profiles of exceptional healthspans - Longevity aficionados, form a line. I don’t want to live forever, alongside tech billionaires, but I have enjoyed defying my survival odds since my first cancer diagnosis at age 23.
Perhaps my own longevity has to do with being a patient and the body learning to rebalance in that context. I don’t think I am remarkable in any way (aside from the leprosy thing, of course). It’s not commonplace but accounts exist of other patients exercising well with a reduced ejection fraction. I am assuming some adaptation and compensation occurs in the body.
[Heart patient disclaimer: Do not attempt an endurance event without discussing it first with your cardiologist, and possibly psychiatrist].
My heart was first damaged 25 years ago and stayed mild for 20 of those years while I remained active (running half marathons, cycling 100 miles, etc). My body had a long time to learn to adjust, perhaps I conditioned it to cope under duress. I might have enjoyed exercise but I also enjoyed life. There were periods of time where I did nothing, my favourite sport in London for a while was going to fancy restaurants with friends and living like royalty (more Henry VIII then Princess Diana).
When I had my daughter a decade ago, my ejection fraction took a nose-dive. I was living in America at the time and had a plethora of doctors overseeing me. They were in a panic, fearing my heart might not withstand the pregnancy, let alone the birth. The epidural did not work. In the US, they don’t give gas and air, so it was just me and a hospital bed - I might as well have been on a mountainside giving birth. With my husband's hand crumpled to bits, I managed to pop out our little one without too much drama. Shortly after birth, my heart quickly bounced back to normal levels, to my cardiologist’s surprise.
I asked my peri-natal doctor why my American cardiologist’s doomsday prediction of my untimely demise in the maternity ward never came to pass. He said he was never worried, knowing my prior fitness would stand to me. I had always thought of fitness as transient, but can an active early life lay the architecture which will see you through the tough times later in life?
My endurance might have a simple answer: a CPET (Cardio Pulmonary Test) could reveal if my tenacity stems from my muscles using oxygen efficiently, or a decent cardio-pulmonary reserve. Testing VO2 max (oxygen uptake) is a trendy trend for young muscle bound athletes, middle-aged triathletes, and anyone susceptible to fads (the weighted vest brigade).
But what if it proved I had abysmal fitness levels, and my achievements were powered by hubris and carb loading? My self worth would disintegrate.
The closest I came to a fitness assessment was after open heart surgery to repair my mitral valve. A physiotherapist noted my BP returned to baseline by the 3-minute check post-exercise, concluding I may recover and condition surprisingly fast. Is that part of what’s driving me?
Another driver is personal motivation. I can be as lazy as the best of them, but for reasons a psychoanalyst will have to unravel, I possess a determination bordering on self-destruction. I believe most things are possible, my husband has a similar mindset - we live in a world of no brakes. If you truly want to do something, then make it happen. Is it possible I just ‘willed’ myself across the country on a bike?
I should point out I am not haring around at top speeds in these pursuits (which also may explain a lot). The only person I am in competition with is myself (and any eejit that dares to overtake me).
Maybe I have no special gene, or physical efficiency/compensation, or motivation - maybe I’m just a nutjob, coasting on the contrails of a medication boost. Protective factors are intertwined, complex and multifaceted, also involving external influences I haven’t even glanced at.
Ultimately, who cares why people can do what they do, although it seems I care. I am conscious that most of my original family are dead, and I have a history of poor health. When I die, I don't want my legacy to my daughter to be the memories of some godforsaken tragic lineage. Perhaps instead, I could pass down knowledge of some inherent strength (which I may have gifted to her genetically - to protect her when I'm gone).
She also completed the Dublin to Galway cycle, she's only 11 years old and she breezed it - so, does she have my secret strength... or my insanity?
Whether I find an answer or not, I am not alone in this exploration, resilience and longevity are the new frontier in personal health, where understanding our inner strengths could guide our tailored care. Outliers, like me, may possibly hold the key to human adaptation.
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