Saturday, July 8, 2017

The Struggle: BAV, Medicine, and Mystery

Medicine -  what is it, really?

According to Merriam-Webster online, one meaning is  "the science and art dealing with the maintenance of health and the prevention, alleviation, or cure of disease".

I have my own definition, based on years of walking beside my husband as well as others with bicuspid aortic valve (BAV) and thoracic aortic disease (TAD). Here it is:

"Medicine is the struggle to discover the secrets, to solve the mysteries, and unmask the disease processes in the human body, in the hope of preventing or relieving injury and suffering."

Having spent a great deal of time with doctors and hospitals again these last months, the struggle is very real. For some like my husband, and his doctors, it is a lifelong struggle, a lifelong fight. Where, oh where, are the answers?

Hasn't Modern Medicine Solved the Mysteries?

When we are healthy, reports about the latest discoveries and breakthroughs, often described in glowing, wondrous words, can give the impression that much of human disease and suffering has been solved and eliminated. As we learn about BAV, we learn there is treatment for it. Later we may learn it is rather generic, one-size-fits-all treatment. Sadly, those with BAV may too often find that their experience, their bodies, are not understood. There are no wonders, no miracles, for the most complex among us in their time of need. Instead, there are many questions, many challenges.

The Challenge of the Unknown

I remember talking once with a young pre-med student about this. He was volunteering in a major medical center, where his eyes were opened to the many unknowns in aortic disease in the chest. We both agreed that day that there is still so much, too much, about aortic disease that is unknown. He is learning to be a surgeon now. I hope and believe he will always remember what he learned then, that there are many challenges awaiting and needing his skills - the challenge of the unknown.

Vulnerable, Fearful, Uncomfortable 

For about 16 years, I have been trying to understand what being born with BAV means for my husband and others like him. I am extremely uncomfortable with not knowing, because it means there may continue to be surprises - unpleasant, ugly surprises that bring suffering, pain, and potentially untimely death.

Treat the Symptoms, Save the Life, but What about the Cause?

I have written before about being told that with the mechanical aortic valve implanted in his heart in 1990, my husband was "fixed for life". Since then, there have been more heart surgeries (a total of four!), a major stroke, and now infection in his blood stream (sepsis) and heart (endocarditis). In hindsight, it is clear how little has been understood about this one man, born with a bicuspid aortic valve.

Imagine multiplying that across every 1 in 50 people, across the entire world. The issues are massive.

There is a great deal of uncertainty in medicine.
This is why I call it a struggle. 

When It Doesn't Make Sense 

Over a decade ago, a man born with BAV had a stroke, just a few hours after his ascending aneurysm surgery. I will call him Matt. The doctors looked for the explanation, but there was no obvious reason for it. The stroke was relatively mild, and Matt went forward and recovered well.

Matt had the same mechanical valve and the same aortic aneurysm surgery as my husband. I always remembered that he had a stroke that "didn't make sense". Why did Matt have a stroke? Everyone moved on, the question not answered.

Sometime later, a shower of particles injured multiple areas of my husband's right brain. Locally, the doctors had no explanation for it. It was another stroke that "didn't make sense". We persisted in seeking the reason, and this time we found the answer through a test called TEE (transesophageal echo). There were still strands of tissue, hanging off the mechanical valve, floating in the blood
stream. There was no doubt that some strands had already broken off and gone to his brain. (There were a few medical papers, very few, that supported this.) We had found the answer! It was important to tell others!

I told Matt and his wife that we had an explanation for my husband's stroke, in case it might apply to him. It did! Matt also had strands on his mechanical valve. Reviewing images from the time of his surgery, the strands were there but not noticed, not understood. Strands were the cause of his stroke right after surgery. Matt had the valve with its strands removed before it could injure him further.

If the reason for Matt's stroke had been found sooner,
 it could have protected others, including my husband, 
as well as Matt himself.

Unanswered questions are dangerous.

After my husband, strands on other valves were found by his surgeon, but always after a stroke. I had always wished that the strands could be found before they hurt the brain. My wish was granted when Father Prodromos had aneurysm surgery, and the strands on his mechanical valve were found and addressed before they could hurt him!

Understanding why
makes all the difference!

Prevention of injury
and providing proper treatment 
depend on it! 

Somewhere, out on the horizon,
there are answers for those with BAV!
We just need to find them!

My husband continues to experience "fall out"/complications following his most recent surgery. Among the biggest challenges has been to make his body give up its secrets, to fully understand and fully treat what has been happening inside him. 

Who Will Unravel the Mystery?
Researchers at Northwestern University and the University of Alberta have been awarded funds to work on the mystery of BAV:  3 Million Dollar Grant Brings Precision to Heart Patients

 Answers cannot come too soon. I wish these researchers well and look forward to their work changing in a positive way the lives of those with BAV.

After centuries of pain, suffering, and death,
may this be the time when BAV remains a mystery no longer.

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