Thursday, November 22, 2018

Thanksgiving Morning - Heart Sounds of Love

A favorite picture of Peter Timneh!

This Thanksgiving Day morning, with the help of my sweet feathered child, I find there is a continuing story of love and thankfulness to share. These are the heart sounds of love between an African Grey parrot and his human Mom, that I have to share this Thanksgiving. 

The two of us have gone through some long, sad days and nights together in the last year, after parting with our beloved "Daddy Bird".

Today we are both thankful to be together, to be alive!

And we are thankful for everyone that make our lives so very special.

Another Fight to Live - The Unthinkable Has Happened!
The setting today in our home is a familiar one. There is very special medication in the refrigerator, which must be given properly and on time, twice a day. Medication that is fighting a terrible infection.
In November 2017 we lost the fight with infection - sepsis and endocarditis - that parted us from our beloved "Daddy Bird". There was no more need for medication, nurses, and so many things that were part of that fight.

This year, the medication is for my beloved forever child, and I am the nurse. He is, of course, the most beautiful, intelligent, African Grey Timneh ever hatched into this world! Above all, he is the most loving creature on earth!

Those who do not experience it may find it difficult to understand the beautiful bond between an African Grey parrot and his human family. I can only tell you that no one could love more intensely - it is impossible. Perhaps we can aspire to equal it. In the wild, the bond between these bird pairs, as well as the greater flock behaviors that enable them to live and thrive, must be truly magnificent.

Peter Timneh came to live with us when he was almost two. His first home had become a disaster, and it took a long time, years, to undo the damage and completely trust each other. African Greys are highly intelligent and intuitive. They are not cuddly creatures, but we found our way to a deep and enduring bond of respect and love. I remember how thrilled I was when he snuggled his head into my hand the first time.

Another Fight with Infection
State of the Art Avian Clinic
Dr. Larry Nemetz
There is an avian specialist in this area, one of the few in the country, Dr. Larry Nemetz. We had been to him once for help early on, but over the years all had seemed well. In late October, I called for an appointment for a check up, thinking something was a little off, but not serious. However, a few days later, I called urgently - something was terribly wrong! There had just been a cancellation!

I was not at all prepared for what the doctor told me. X-rays showed severe pneumonia in those little lungs. Yes, another fight with infection. I was deeply shocked. I managed not to faint. The first dose of medicine was given by the doctor. We managed to drive home safely!

Love and Medicine

The medicine is given by a syringe into his mouth. The doctor showed me how to do it, restraining him in a towel! I had never ever held my beloved baby that way, having read he would never forgive me for such a terrible violation of his person! In the early years, I believe this would have been the case.

Now, we had no choice. Twice a day, twelve hours apart, the drug must be given. How much did we love and trust?!

One night  his breathing was so labored, holding him in that towel, I feared he would die in my arms. It passed over and the medicine went in! His doctor has now told me that having survived more than two weeks from the diagnosis, he should do well.

We have learned together how to take this medicine because we discovered the secret - the most important part is love! Soft words of love and reassurance help us both be calm enough to take the medicine, despite that terrible towel! Then, once the medicine is down, the magic words "All Done" are said, the towel goes away, and the best reward of all, a kiss!

When birds are upset and emotional, they may bite out of fear. I do not suggest that anyone else do this with their feathered family member.

When I mentioned how we manage the medicine, the lovely woman who works at the Bird Clinic told me that most of the time she hears horror stories about trying to give parrots their medicine....  and so I know, we have a very special relationship.... I am comforted that he has a wonderful doctor, the medicine is working, and he loves me enough to forgive me for what I must do to him....

Parallels Between Parrots and BAVers

I have been struck about some parallels between my feathered family member
 and those with bicuspid aortic valves and thoracic aortic disease. 

Resigned to going back for a checkup!
Unintentionally, they both are very capable of "hiding" a serious condition until it is critical. Somehow their bodies compensate until they are right on the brink of disaster. I will not count just now the times that "suddenly" we fell off a cliff into crisis with BAV over the years.

My feathered child has a doctor who understands this. He has told me more than once that a) this had been coming on for awhile, but not visible to me b) symptoms and behavior cannot be used to guide the treatment - xrays and testing must be used to understand the true condition!  How I wish that more human physicians understood this about BAVers!

Fear in the doctor's office!
Visits to the doctor, even though he is very smart,
 understands what is wrong and is saving my life,
 are stressful!  BAVers can relate!
The popular understanding of how long they live is not accurate. I had been thinking that at 24, my sweet bird still has many years, perhaps double his age now, before him. His doctor is telling me that is not the case. At 24 my beloved parrot is already very vulnerable to health issues.  No doubt there are a number of reasons for this, including diet and a weakened immune system. As we extend the lives of BAVers, some of them may develop other vulnerabilities also. We need to understand so much more about them!
Safely home from my check up - get me inside fast!

One thing we can and are doing is improving his diet. This is a good idea for us all! It gives us every advantage when the time comes to fight a disease. He cannot have any fruit at all or anything with sugar due to the infection. And long term he needs to give up seeds and nuts for specially formulated pellets! He is not enjoying this, but at his recent checkup, he has gained 20 grams!

Heart Sounds of Love
Above all, those who seem so strong and healthy and actually have something wrong need extra special love in their lives! It is my greatest wish for all with BAV and TAD - that their loved ones walk beside them, every step of the way, no matter where it leads. I have no doubt it will lengthen their lives!
This Thanksgiving morning as I write this, he has chosen a soft perch with a cheerful view. The sun is shining after the rain. And there is thankfulness and love in our hearts, for each and every one who we are blessed to have in our lives.
There is much more recovery ahead;
 we know that love will get us through it!

Happy Thanksgiving with love,
Arlys and Peter Timneh

Saturday, February 17, 2018

Broken Hearts this February - Remembering Bill Paxton and Those Who Grieve

Red Jasper
The Warriors' Stone
In February . . .

as children, we gave valentines to our classmates.

growing up, we learned about "Heart Month" - a time to focus on heart disease.

feeling invincible, we found our very own heart-mate, our one and only valentine.

later, we learned about BAVs and aneurysms, and wondered why we had never heard of it.

one went into the OR and the other waited as our heart-mate had open heart surgery.

some remained in the fight to overcome BAV and aneurysm.

And, in February, some lost their heart battle.

Yes, February is still about valentines, chocolate and flowers.
For some, it may be the month their hearts were saved.
And, for some, this month our hearts are broken.

Bill Paxton

We were almost ready to leave the hospital a year ago, following my husband's third aortic valve and fourth open heart surgery, when Bill Paxton's death became public. He should have had what all BAVers should have, a successful surgery, his first. What could have possibly gone wrong?

When someone with BAV is lost, we all lose. 

I did not know Bill Paxton, but there are things about him I know well. Like my husband he had rheumatic fever as a child. They also were both born with BAV and over time an aortic aneurysm developed. Like the majority with BAV, he was high energy and gifted, described here by co-star Mary Kay Place.

Video clips show him as the youthful picture of health, almost too perfect, that is typical of BAVers. Others may not notice this detail, seen in some BAVers, but in his smile I see the slight gap in his front teeth. My husband's gap was more pronounced.

If it hurts me to look at video clips of this vibrant man, what indescribable grief Bill Paxton's family must be living through now, the time of the one year anniversary of his surgery and then 11 days, one by one, until his death.

It is extremely painful to read the law suit just filed by his wife and children, grieving the loss of their husband and father. The words take us into a place of horror, with no escape for Bill and his family. 

The Right Hands, Not the Right Buildings

There is no time we are more vulnerable than when signing the papers, giving our hearts, our lives, into the hands of a surgeon and all the others involved. There are up to 100 "Does" listed in this lawsuit, their names unknown at this time. 

Having been through 4 open hearts with my husband, two of them in that hospital, I can easily picture the physical setting. How much of what is written in the lawsuit can be proven in a court of law? I do not know. I do know what is alleged is indescribably horrifying and tragic.

It reminds me of what I heard once - that buildings don't provide care, people do. The absolute greatest challenge for those with BAV is to find, not the right buildings, but the right people to undertand us, to save and extend our lives.

It is a challenge that my own family and other dear friends continue to face.

My February Memories

Memories may not comfort those who grieve at all. They haunt us. I have my own February memories, including two open heart surgeries in this month. We fought for about 8 months after that last February surgery before losing the battle. 

Others tell me the "firsts" are the hardest. I cannot tell you whether this is the case. It is too soon.

I can tell you that this is my first February without my husband, and I am among those with a broken heart. 

This February
may I rise beyond
 the grief and sadness,
and be
more understanding,
more empathetic,
and more caring.

                    ~ Arlys Velebir

Thursday, November 16, 2017

Until We Meet Again, My Love - the Last Heart Sound

Under the wide and starry sky
Dig the grave and let me lie.
Glad did I live and gladly die,
And I laid me down with a will.

This be the verse you grave for me;
"Here he lies where he longed to be,
Home is the sailor, home from sea,
And the hunter home from the hill." 
-                                               -  Requiem by Robert Louis Stevenson

Somehow these words of the poet have come to me, perhaps from school days, as I made the arrangements for my husband's body to finally rest under the beautiful Big Sky in Montana.

Red Jasper
"The Warrior Stone"
Yes, the last battle has been fought in a war that he and his courageous, wonderful physicians ultimately could not win. It became clear that it was no longer necessary for him to hunt, to seek more help from medicine or another procedure. He could return from the sea of life, where in 2017 he was hospitalized five times, and take his last breaths as he desired, in his own home.

On February 28th, he underwent a high risk, technically challenging fourth surgery to replace his failing bovine aortic valve once again. The surgery was perfect, he did well, and came home to begin what seemed like a routine recovery. However, he abruptly went into kidney failure a little over two weeks after surgery, coming to the brink of death before fighting back and returning home. There was no explanation for the kidney crisis then, but in retrospect I believe it was the extreme response of his immune system to a foreign invader, bacteria that entered his blood stream at the time of surgery. In the course of time, the bacteria was identified and he underwent multiple rounds of treatment, most recently about 8 weeks continuously. Removing the infected valve surgically was not an option - he would not come off the operating table alive if it were attempted again. He was still in the fight, however, and an expert in valve-in-valve TAVI offered him a procedure to insert a new valve into the infection-damaged one. However, it became apparent that the infection was still present, and it viciously destroyed the electrical node near his aortic valve. He was in complete heart block, and it was not hard to understand it was time to leave the battle to others with BAV.  This heart warrior, who underwent 4 open heart surgeries and suffered a major stroke from valvular strands, had been given permission to leave the fight.

Since he has left me, our beloved Dr. Rose and many others have remarked on how amazing it was that he was able to go through so much: 4 open heart surgeries and the stroke over a period of 27 years. He was hospitalized 5 times in 2017. It is true that he was gifted with great physical strength, and his heart muscle was strong. Above all, he had learned that his help and strength came from God, who had gifted him with life, breath, and all things. Over and over, I saw him rise above the pain from the infection and the painful things done to him, things necessary in order to help him. 

But they that wait upon the Lord shall renew their strength;
 they shall mount up with wings as eagles;
 they shall run, and not be weary;
 and they shall walk, and not faint.
                                                - Isaiah 40:31

This verse from the Christian Bible has beautiful imagery, as does this picture of a soaring eagle. As I walked beside my husband every step of this journey, every battle he fought, I know that these words are not just beautiful, they are the answer to how he continued to cherish the life God gave him, regardless of what happened to him, until the moment it was time to go Home. I write this here because I know he would want to tell you this, if you should ask how he was able to do the things he did.

The bacterial infection caused his new bovine aortic valve to leak, and once again he had a heart murmur. When at last his heart stopped beating, the murmur stopped too, never to be heard again. 

My beloved, the battles are over,
 the murmur is gone, forever.
  Soon your body will rest
 under the wide and starry sky,
 as you wished.

Sunday, August 6, 2017

Reasonable Hope - Infection and Heart Sounds

His nurse was listening to his lungs recently. It was a relief to hear her say the lung sounds were normal. And then she said, "You have a heart murmur though." 

It was not the first time, of course, we have heard those words. My husband has lived with them from childhood. Over the years, there have been surgeries to address that murmuring aortic valve. Three of them. (A fourth surgery addressed an ascending aortic aneurysm.) The murmur would improve, then worsen again as the man-made solutions, mechanical and tissue, failed over time and in different ways.

Recent echo with DeAnn Paul, who has expertly
imaged his heart for many years. There are videos of her explaining echo's
on the Bicuspid Aortic Foundation YouTube channel.
 And so, here we are again, despite so many efforts to have a working aortic valve. We know why the bovine aortic valve, just a few months old, is murmuring now. There is infection in his heart, caused by bacteria acquired in a hospital.

Courage, In the Presence of Fear

I had watched the latest echocardiogram, heard what his doctor said. Somehow, though, when his nurse said "heart murmur", the all-too-familiar icy fingers of fear grabbed my own heart once more. It is the cost, those moments of fear, of loving and caring for someone complicated, someone who was born with a bicuspid aortic valve. It is at such times we find within us the depths of love and courage we need, in spite of the fear. Perhaps those depths are never realized, except in experiences such as these.

Vancomycin - Packaged for home use

Reasonable Hope 

One of his doctors used these words recently, "reasonable hope".  Hope is a special word, and this time it needed to be qualified as "reasonable". What is this reasonable, medical hope? The hope is that a long series of vancomycin treatments will help him.

Several weeks of another drug, daptomycin, failed to clear the infection. In the struggle to understand and treat this, at least there is no debate about that drug's failure. The recent echo clearly showed infection still present.

This leaves only the drug vancomycin, administered intravenously also, through a catheter called a PICC line. That in itself is not without risk, another catheter dwelling in his veins, ending near his heart.

 A high enough dose of "vanco", maintained for a long enough time, is what we pursue today.  The treatment is somewhat complex. The drug has significant side effects, and the level in the blood must be measured to insure there is enough present to kill the bacteria.

We can do this! 

Hospital Acquired Infection

This infection is the result of bacterial contamination of his blood, most likely through one of the catheters inserted into his veins at the time of his surgery.  This unwelcome bacterial invader  took time to clearly reveal itself, however. It nearly cost his life more than once. Who knew that sepsis and then later endocarditis can be so difficult to diagnose, at least in my husband?

The Cleveland Clinic has established an Endocarditis Center. There are two videos at this link where doctors describe their approach, along with text explaining about infection in the heart. 

This article, also from the Cleveland Clinic, sheds some light on infections in the heart: Infective endocarditis

A War with Many Battles

There is so much still not understood about the bodies of those born with abnormal aortic valves. It leaves them vulnerable to aortic stenosis, aortic insufficiency. aortic aneurysm, aortic dissection/rupture, and endocarditis. My husband has had all of those things except dissection/rupture. In addition, valvular strands on his mechanical valve caused a stroke.

His aneurysm was discovered and "disarmed" in time, before it could tear or fully rupture. We thought that was the last big battle. It was not. There have been many since.

This is a lifelong war with many battles. He remains in the fight.

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.

Saturday, June 3, 2017

Emergency Again!

A Lifelong Journey

The drive to this local hospital remains unchanged. It's ownership and name have changed with time, but we are very thankful that the small hospital nearest to us, where my husband was first hospitalized 27 years ago, is still there for us today. 

A beautiful natural setting, this hospital overlooks the Pacific. 
His first echocardiogram, later his first CT scan, were done here. We had no idea, so long ago, that important battles in my husband's fight to live would need to be fought here once again in 2017.

When we made the decision to have surgery once again at the end of February, our hope was to have a recovery similar to his other surgeries. Some things have been different with each surgery. 

No doubt the easiest and best recovery was in 2001, just 16 years ago now. We were admitted to the hospital on Memorial Day. This surgery removed his ascending aortic aneurysm, removing the danger of aortic dissection or rupture. He was strong, healthy and discharged on the third day after surgery. He healed well, and never looked back!

 Recovery from his first surgery, in 1990, and this last one have been the most difficult.
 Both times, he was in varying degrees of heart failure.

 His surgeon tells us his tissue is very fragile now. I truly hope that doctors will recognize the connective tissue aspects of those with BAV that genetics
 are beginning to reveal.
  It would help so much in understanding the whole person.

We repeat history, returning  to the same Emergency Room decades later.


After what we call the "kidney crisis" at the end of March, we returned home with hope in our hearts that the worst was behind us. After only about a week, he developed shoulder pain, which gradually became worse and reached the point where we were working on seeking help. Before that could happen, he spiked a fever!
Walking through the ER door once again, 27 years later, with a fever.
Fortunately, by this time we had met with a local physician who is very familiar with his heart issues and had arranged for him to take my husband as a patient. That day, we had an appointment just as the fever peaked. We were sent directly from his office to our local hospital, where the battle was fought.

The parking area also remains unchanged.
He was admitted to the hospital and started on powerful IV antibiotics.

I found comfort in the words of his doctor, "It may take some time, but we will get to the bottom of this."


He had been treated with powerful, IV antibiotics immediately that are known to be most effective, while waiting for blood culture results. Then one day we were told the something was growing in the blood cultures!

Sepsis is bacterial infection in the blood. The blood should be sterile, no bacteria should be there. It is to be especially feared in someone born with BAV or who has an artificial heart valve. They are magnets for bacteria!

I had horrifying visions of his new bovine valve, just two months old, being damaged by some vicious bacteria. If the bacteria should settle on his valve or tissue lining his heart, the infection would be called endocarditis. This should always be feared. They had told us this 27 years ago, with that first prosthetic valve. It was a known risk long ago for those born with BAV, long before there were antibiotics. It remains a danger today for native BAVs as well as artificial valves. What is worse, in today's world many antibiotics no longer work against bacteria. Infection can indeed be a deadly killer once again.

Echocardiogram - Is the New Aortic Valve All Right?

My husband had paid a high price already to receive a new aortic valve, first the surgery and recovery, followed by the kidney crisis. It was unbearable to think that the valve might be damaged and fail all over again.

When his doctor reviewed the first echocardiogram done at his bedside, it did not show the aortic valve clearly enough. The next day something very special happened at my husband's bedside. His cardiologist personally came, along with his echosonographer (who has become our dear friend, looking out for his heart for so many years). Together they persisted until his aortic valve was clearly seen.

I will never forget them, and what they did for us that day. Only the most dedicated, the most compassionate, do such things. I wish every person could receive that kind of care.

Initially it appeared that the new aortic valve might have developed a significant leak. I felt my own heart breaking. This was among the lowest points in our recent battles. In my moments alone, I cried over that bovine valve, still so new and possibly already damaged. It seemed too much, that he would lose the function of the valve he had braved so much to have.

After more review and discussion with his surgeon, it was decided that the new valve was not damaged after all. We could breathe again!

Final Results

At last the bacteria from the blood culture had developed well enough to determine what it was. He was to continue the IV antibiotic, a PICC line was inserted, and we were allowed to go home with assistance from home health!

As we returned home, it was to see this lovely planting, a reminder of endurance over many years.
This plant, a gift at the time of his first surgery,
faithfully blossoms year after year.
It is a gentle reminder
to keep hope
 in our hearts,

Sunday, April 9, 2017

When a Heart Valve Fails

It is 27 years this month since my husband's own bicuspid aortic valve was replaced. It had completely failed him, causing his entire heart to fail too.

Since that time, we know now that his body has struggled with the artificial valves that have kept him alive, aortic valves made by man. First a mechanical valve. Then a bovine tissue vale. And now, it is almost 6 weeks since he received his third artificial aortic valve.

Why another surgery? He was, quite simply, on the brink of losing his life. The 11 year old bovine prosthetic valve in his heart was failing.

The 2 leaflets at the bottom were completely frozen,
only the 1 leaflet at the top was moving to let blood flow
Tissue Valve Deteriorating at Eight Years
At 8 years, we were told that one of the leaflets was not moving well. Only 8 years?

We had hoped that he would be like many in his age group, whose bovine pericardial valves still function at 20 years.

Inside his body, for whatever the reason, the valve is considered a foreign invader, something that needs to be attacked or healed!

I had read that tissue valves like this last about 6 years in children, and that was the case for one teenager we know.

He had a transesophageal echo, and those findings was more hopeful. The one leaflet in trouble was moving enough to close completely, it just could not open all the way. Maybe it wasn't too bad, and would still last quite a long time.

Another Leaflet in Trouble

Late in 2016, with the valve approaching 11 years old, a "regular" echocardiogram, through the chest wall, showed that two leaflets were in trouble now. We had to face that it wasn't just one leaflet, and that this valve continued to deteriorate.

Surgery the Only Hope

My husband was not a candidate for TAVI (TAVR), the procedure where another valve is threaded up and inserted inside the old, failing valve. One of the reasons for that was that his aortic valve diameter is too small, only 21 mm, to accept another valve inside it.

There was another reason also, that would have prevented TAVI from helping him. On the bottom, or "intake" side of the valve, my husband had grown scar tissue, called pannus all around the ring of the valve. It is pictured on the left. Most of the tissue was cut away and sent to pathology, so only a small part of the softer tissue remains attached.

This tissue was also blocking blood flow. In order to have full blood flow, those failing valve leaflets, and the scar tissue attached to the valve ring, had to come out. There was no other way.

Today, understanding these things, I am surprised that my husband's heart and body had coped as long as it had.

I found a paper from surgeons in Japan, Subvalvular Pannus Overgrowth after Mosaic Bioprosthesis Implantation in the Aortic Position, that discusses this happening in some of their patients. There is a picture, Figure 1, that shows the ring of scar tissue below the valve. In the conclusion, it mentions that preventing this scar tissue formation is unsolved.

My husband also grew pannus and strands of tissue on his first prosthetic valve, a mechanical valve. My personal feeling is that there is something about his body's reaction to these "foreign" valves that causes it to want to heal. However, in the body's attempts to heal, it has hurt him.

I do not know how many people form scar tissue on their artificial valves. Perhaps some of them do not live long enough.

In any case, this is why time was no longer our friend, and the surgery door was our door of hope. 

No Solutions?

And that, in this year 2017, remains the challenge. There is still far too little that is understood about the tissue in some of those who are apparently most complex, like my husband, who were born with a bicuspid aortic valve. For the sake of generations following us, we need answers to these mysteries.

I am glad that physicians such as those in Japan have seen and published about this. I refuse to believe that there are no solutions to these problems, if only someone will look for them!