Thirty Years
As 2020 comes to a close, today I reflect on the experience of three men who each had aortic valve replacement surgery from a thirty year perspective.
What was it like for people who needed aortic valve replacement in 1990?
Full open heart surgery was required to replace the aortic valve. Surgical replacement with an artificial heart valve had about a thirty year history then, dating back to roughly 1960.
What kind of artificial valve would a given person receive? It seemed straight forward at that time. There were two general kinds of artificial heart valves: mechanical and tissue.
For younger people, with the exception of women who wished to become pregnant, a mechanical valve would be used, requiring anticoagulation (warfarin) to prevent blood clots and strokes. Taking warfarin required periodic blood tests. Warfarin patients were also given dietary restriction counseling.
Older people were offered tissue valves projected to last about 10 years, allowing them to avoid living with warfarin.
Thirty Years Later, 2020
These three men all received mechanical aortic valves, valves that were intended to be a lifelong, durable solution for each of them. After healing from surgery, all three men resumed their lives.
Two of these men continue their lives with those original mechanical aortic valves. They have reached "old age" now and have developed other health problems. However, their original mechanical valves continue, just as intended, to open and close with each beat of their hearts.
The third man's experience turned out to be very different.
The Third Man
The third man lived for 27 years following his first surgery. Between 1990 and 2017, he underwent a total of four open heart surgeries and experienced a major stroke due to valvular strands and pannus that had formed on that original mechanical aortic valve.
He lost his life following a tremendous fight with sepsis and persistent endocarditis due to resistant bacteria introduced into his blood stream at the time of the fourth open heart (third valve) surgery.
Was there something different about this man, the third man? Yes, he was born with a bicuspid aortic valve (BAV).
How do I know so much about him? When I met and married a man with a heart murmur, the future unknown to us then as it is for us all, I married the third man.
Much of what I have learned about BAV and thoracic aortic disease (TAD) is from what became our relentless pursuit of answers and help, as we faced together yet another battle, too often an ambush, when various complications confronted us. Far from being "fixed for life" as we happily believed when told this in 1990, we would become, out of necessity, readers of the medical literature, keepers of medical records, and searchers for answers along with the physicians and surgeon who bravely helped us.
We remained hopeful that each intervention would be the last, but over time our "heart journey" was much more like a convoluted roller coaster than the hoped for predictable path forward.
My beloved husband's life ended that way, after months of precipitous ups and downs, with so many unanswered questions about the mysteries, the most obvious clue being that two-leaflet aortic valve replaced in 1990 and the large ascending aortic aneurysm "discovered" in 2001. There were other congenital "anomalies", somehow part of the package accompanying being born with a bicuspid aortic valve in this man. Eventually, I have recognized some of those things in others who also have been born with BAV.
2020: What has Changed?
It is three years now since this one man's last battle ended, but the fight continues for others living with BAV/TAD and their physicians. Many questions, that persist since at least the days of Abbott and Osler, remain today for pursuit by those in research.
Some born with BAV, like my husband, will take their physicians far beyond what is known, out on the frontier so to speak, where unexpected battles are fought and only sometimes won.
At this time, the big change regarding aortic valve disease is the availability of TAVR, which I first learned about in the 2005/2006 timeframe. My family and others I know have clearly benefited from this technological innovation. However, along with this new option come numerous questions to be carefully considered for those with aortic valve disease, perhaps most especially younger people born with BAV.
What Will Another Thirty Years Bring?
In the context of 60 years of history, what does the future hold?
In our family and so many others around the world, there are those with more severe, not readily apparent BAV/TAD variations. Given the prevalence of BAV in the population, their actual numbers likely are not small globally. What does the future hold for them?
One of my greatest hopes for the future is that there will be the ability to proactively identify "the third man", those with complexities in their bodies that challenge the most skilled medical and surgical solutions. Yes, I continue to hope that in my lifetime, there will be greater understanding, more answers, and increasingly better treatment options than we have today.
Best wishes for the New Year,
~ Arlys Velebir
