Saturday, March 9, 2013

Living with BAV - Hope for Family Members

I took this picture at Sea World in San Diego. We may never
stand on the nose of a whale, but we may find ourselves
doing amazing things of a different kind when our loved one
has BAV disease.
My husband has bicuspid aortic valve disease. On at least five separate occasions, it has seriously threatened his life.  Like most people, I had encountered serious illness before, through my family and friends. But nothing prepared me for bicuspid aortic valve disease. Nothing. Perhaps it is the ability to suddenly create very dangerous situations in seemingly strong, healthy people that sets BAV disease apart. It has injured my husband, despite our best efforts to protect him. It has broken my own heart, only to find that my husband's smile could heal it again.

November 2007

Darkness comes early in November. Walking with my husband in the evening, twinkling lights outline the communities around us.  My eyes linger on one large building, its glow standing out from the general glitter.  Recognizing our local hospital, I remember again one particular night in November - the night when I drove toward those lights, following an ambulance. Inside that ambulance was my husband. An agonizing distance of just five miles, it was the beginning of an unplanned journey into the world of brain injury.  I realize now that it is more than time for me to say something important.
No matter what happens, keep hope with you always.

My last memories of my husband without injury to his brain are happy ones. There was no warning, no sense of impending disaster that morning. Later, while alone in our home, he fell repeatedly, unable to keep his balance. Finally, he could no longer stand at all. I found him on the floor hours later - alive, but disoriented and completely helpless. Paramedics came quickly. And so, I followed an ambulance into the unknown on a dark November night.
A Bolt of Lightning

The symbol for stroke is a lightning bolt. It is an accurate depiction of a "brain attack"; victims are stricken suddenly, without warning. The injured person often has no idea what is happening. In concept, an embolic stroke is similar to a heart attack. However, it is different also. Unlike heart muscle, there are no pain receptors in the brain itself. The cells do not cry out as they die. My husband remembers falling. He had no idea why.  He felt no pain at all.
"Creating a Climate of Hope"

"Creating a Climate of Hope" I love these words, the theme of the Bicuspid Aortic Foundation. In the years leading up to 2005, through my husband's critically severe pneumonia, congestive heart failure, and two open-heart surgeries,  I had already proven that hope is vital when confronted by aortic disease. But on that November night, I was about to learn something more about living in hope - this time, in the context of strokes.

From the moment I found my husband, helpless and paralyzed, I was shocked into action. No matter how much it hurt, this was no time to despair. As I write this now, I can think of many times when fear gripped me, but I cannot think of even one time when hope was not there.
Valvular Heart Disease and Stroke

"Progress in Medicine is often triggered by emotional circumstances. As a resident in cardiac surgery in the early sixties at the Hôpital Broussais in Paris, I was struck by an artist suffering from a valvular disease whose valve had been replaced by a valvular prosthesis. Three months after the operation, he presented with a severe brain damage due to the migration of a clot formed in the contact of the prosthesis. He couldn't paint anymore. The same valve, which had saved his life, had now definitely impaired his quality of life. At this very moment, I decided to devote my research to this problem."

   - Dr. Alain Carpentier's Acceptance Speech
    The Lasker Foundation 2007 Clinical Medical Research Award 
I was deeply touched by these words of Dr. Carpentier's. I did not know until recently, when I read Dr. Carpentier's acceptance speech, that he was so moved by a stroke victim that he devoted his work to perfecting bioprosthetic heart valves. Similar to the artist Dr. Carpentier mentioned, the mechanical valve that so clearly at one point saved my husband's life later became the source of serious injury to him - injury to his brain.
20% of Left-Heart Prosthetic Valve Patients
Have Strokes Within 15 Years

A paper from the University of Ottawa, 
"Late incidence and determinants of stroke after aortic and mitral valve replacement", studied those with left-heart prosthetic valve replacements. Published in 2004, the abstract states that about 20% of those who have a prosthetic valve experience an embolic stroke within 15 years after valve replacement.   

My husband had lived without incident for over a decade with a mechanical valve. Following the diagnosis and timely, marvelously successful removal of his ascending aortic aneurysm,  I dared to hope that we had conquered the worst this disease could do. However, I realize now that his stroke experience fits into these statistics reasonably well - my husband's valve had been in place just over 15 years when he suffered a massive right brain injury. 

A Shower of Particles to His Brain

As Dr. Carpentier mentioned, a blood clot is the likely suspect when someone with a mechanical valve suffers a stroke. In my husband's case, this explanation did not fit. Locally, I was told that they could not explain what had happened - the reason could not be found.  He essentially had multiple strokes at once - a shower of particles had reached his brain. Why?

It took careful investigation to find the explanation.  We learned that fine, hair-like strands of tissue had formed on the intake side of the valve. Pieces of these strands had broken off and traveled quickly through that efficient plumbing system, designed to keep the brain well supplied with oxygenated blood.  Reaching his brain, these fragments blocked blood vessels. Cells without blood flow cannot live very long.

Today, I wonder how many individuals have strokes, not from blood clots, but from valvular strands. There are only a few papers in the literature. My husband was the first case that his doctors had seen. In the months since his diagnosis, they have found these strands in four others. Valvular strands are only found by transesophageal echocardiograms (TEE). On the screen, they are small white dots that move quickly across the visual field. Physicians and patients are on the frontier of knowledge here,  learning together about valvular strands.
A Devastating Complication

The paper from Ottawa begins by describing stroke
as a "devastating complication".
It is.
But never let anyone take hope from you.

Brain injury was completely foreign to me as I entered the emergency room that night, totally unprepared. Sadly, it is not a stranger in that setting. Stroke is the leading cause of disability and ranks as the third cause of death in the United States. Hearing "Code Stroke" over the hospital loud speaker always filled me with tremendous sadness. In addition, motorcycle and car accidents, falls, and many other catastrophes result in "TBI", traumatic brain injury. We found ourselves in this world, where young and old alike desperately seek help, where ever it may be found.

I have read the reports now, including the technical description of the damage to multiple lobes of my husband's brain. Words on paper, had I seen them then, in those early hours, they would not have mattered to me. I, who knew him best, was focused on any evidence, any tiny sign, that my husband was still there.

He was! But like the landscape after an earthquake, there was damage. Vital bridges were out. Some structures had crumbled, others partly collapsed. I remember watching as the ER doctor asked him to wiggle his toes, move his left foot, leg, arm, fingers - nothing. Paralyzed on his left side, I also thought he was blind in his left eye. Later I would understand it was not his eye - it was damage to the visual centers in his brain.

With time I would find that many things were still intact. But vital links and functions were gone - things we so easily take for granted. What we both needed then above all else was the conviction that what was lost could return again. We needed hope.

There is a common thought that the first 6 to 12 months are generally when recovery occurs after a stroke. We have long ago passed that time frame now, and we know from experience that the first year is not the end of improvement. Perhaps for some things, it is still just the beginning. 
It is important not to under estimate the ability of the brain to heal and repair itself. There is a term used to describe this ability of the brain to adapt and change - neuroplasticity. The brain is indeed capable of recovery.
It would be a tragedy to limit the brain by giving up.
Hope will never let that happen.

Tread Mills and Roller Coasters

What is it like to go through a major stroke with your loved one? It is a complex experience, and a book with many chapters would be required to cover all that should be said.

Along with my husband I suddenly became part of a chain of events beyond our control.  Imagine that you both have stepped on a treadmill that never stops. There is no way for either one of you to get off. Your only choice is to keep going, one step at a time. That is what the intensity of the come back from a stroke has been like. There are no days off, and no vacations, from brain injury.

My husband's experience was complicated by two things: 1) there were "multiple infarctions" or areas of injury to his brain, 2) shortly after his stroke, he underwent his third open-heart surgery to replace the mechanical valve. Both of these made the experience especially challenging. At times, it has felt more like a roller coaster - there have been definite ups and downs, but the trend always upward over time.

Along with the stroke came a confusing deluge of papers and forms - insurance, disability claims - that must be dealt with. At times it was over whelming, and I learned to prioritize. Researching options for treatment and therapies - and a relentless round of doctor appointments, lab work, medication adjustments, and therapy sessions - all were part of the experience, especially in the early months. We both look back now and wonder how we did it. It must have been because hope was always there . . . . 
When exhaustion sets in, hope is there too.
Reminding you that you still have each other.
You can keep going, because you are together.
Together, you can make it.

The key for us was and still is in surrounding ourselves with positive people, working with those who are fully committed to the concept that the brain does indeed come back. We are fortunate to live in an area where there are a number of choices and to have the ability to take advantage of them.
Courage is doing what needs to be done,
when it needs to be done.

Someone described courage this way, and  it has helped me very much. I do not always feel very strong or very brave. I have found that this condition that affects my husband  has at times terrified me, and I know it may do so again. But it need not  affect my courage. And I would like to share that courage, because I believe it can help someone else. It is just a matter of doing what is before you at this moment, today. It is not about what has happened in the past or what waits in the future. It is simply doing now whatever it is that needs to be done.
You will find that you can do amazing things.

There are so many  things you can do if you have courage. You can search for the best information and expertise. You can pursue every option in understanding what has happened and what choices are available. When time for surgery comes, you can wait for an eternity while it is performed. Later your touch, the sound of your voice, your love - these are powerful medicines, indespensible "critical care" that you alone can give.

Yes, you can smile when your own heart is breaking . . .
                           and bring hope with you always . . .  
                                      because your loved one
                                               needs your strength,
                                                          your reassurance.

               Later,  you may cry, all the tears you have  . . . .

And Hope Will Bring You to a Brighter Day
December 2007

Two years ago in December I pushed my husband in a wheel chair -- to his meals in the hospital rehab dining room, sometimes outside for a breath of fresh air on a sunny afternoon. This year, what a different setting - December found us enjoying a day at Sea World in San Diego! Walking everywhere together on a glorious sunny day!

Along with hope, I have found other treasures on this journey. Costly ones. Perhaps they would not have come to me in any other way. Love . . . faith . . . comfort . . . peace . . . strength . . . courage . . . the caring of  friends . . . the kindness of strangers . . .  my husband's smile as we mark another milestone together . . . .
These jewels sparkle in my memory . . . priceless gifts . . . .  

Yes, we have come to a much brighter day,
and hope continues to whisper in my ear,
telling me of wonderful possibilities still ahead,
because the body loves to heal.

For anyone who wishes to reach me, you may do so by emailing the Bicuspid Aortic Foundation. - Arlys Velebir

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