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! 

Surgery Number Four - The Longest Day

The heart is a Red Jasper stone,
 known as the "warrior stone"

 We had been asked to come to the hospital early, and we were right on time. The clock said 5 AM sharp as we signed in at the front desk. It was the beginning of the longest day, his fourth surgery. . . .

I was prepared for this day to be a long one, especially from that moment when we parted at the "Kissing Door". 

After 27 years, some memories of his first surgery day have faded, but some never will. I remember the shock I felt, going in to see him in "recovery" in the afternoon. Later, I was there when  he awakened from the anesthesia with a great commotion of alarms blaring at 6 pm that evening. As soon as he opened his eyes, we connected again, although he could not speak yet. This is the most wonderful moment for me, when I feel we communicate again - we don't need words!

Until this recent surgery, that first one had been the longest - the longest period of time when I felt separated from him. The elapsed time of the two surgeries that followed (aneurysm in 2001, replacement of mechanical aortic valve in 2006) were shorter, and he woke from anesthesia quickly.

Why so long?

Why was this this surgery going to take so long? There are two main reasons: 1) scar tissue and 2) the delicacy of my husband's own tissue. I have been convinced for some time that in our family as well as many others, BAV is a sign of something that involves the body's tissue more broadly, not just the aortic valve and aorta.

1) Scar Tissue

After a first heart surgery (and he had 3 prior!), the body forms scar tissue, not just on the outside of the chest where we can see it, but on the inside. This scarring has to be gently and carefully navigated.  "Rise of the Redo" , an article from Royal Brompton and Harefield hospitals in the UK, describes the challenges.

2) Delicate Tissue

It was the next morning, in ICU, before my husband was even allowed to wake up and breathe on his own, that the surgeon told me about how very delicate his tissue is inside now. It had been 11 years since these same hands had last operated on my husband.  Now, his tissue generally is so much more fragile, only the gentlest touch would not damage him! In the wrong hands, this surgery would have been a disaster. 

Many BAVers, including my family members, have delicate tissue that manifests in various ways, and it seems to become more so with time.

A few weeks ago now, I heard Professor Mona Nemer describe her work with BAV mice families. I was thrilled to hear her say that the genetic defects in these mice, so like their human counter parts, are defects of the tissue. BAV has not been called a "connective" or other kind of tissue defect historically. Professor Nemer's work is vital to looking beyond a malformed aortic valve alone, and accurately characterizing those with BAV.

Progress, One Step at a Time 

The most lovely liaison nurse went into surgery periodically and then updated me on the progress through out the day. It was just after noon when she told me that there was lots of scar tissue, but the old valve was out! 

It was great progress, and I felt relief flow through me for a moment. Then I realized that he had no aortic valve at all now, until a new one was safely anchored in place! 

It took the remainder of the day to place a new valve, slowly rewarm him, and close the chest. The surgeon came out to tell me about the surgery around 6 pm.

I will write separately about what the surgeon said about the old valve. What was it really like? How well had the echocardiograms and CTA tests prior to surgery portrayed what was happening inside my husband's chest? Learning from this is extremely important, given that these tests, along with symptoms, help guide the decision to have surgery or to wait longer. I will just say now, the tests and symptoms were accurate enough for us understand that waiting was not an option for my husband, if he was to have this surgery at all. 

More Waiting 

Yes, surgery was over, but my husband would not be allowed to wake up as quickly as he had with his past surgeries. Before surgery, his right heart had been overworked by the failing bovine valve, and the long surgery time had also been hard on it. He was to remain sedated while his right heart recovered. Thankfully, his left heart, the main pumping chamber, was strong! 

It was a long night, thinking about that right heart. By 8 the next morning, I was told that his right heart had completely recovered during the night. Soon, he was awake and then breathing all on his own once again!

Family Friendly Care 

I was allowed to remain with my husband in ICU from that very first night, which was wonderful! This is generally not the case in ICU's. We would spend a total of four nights there. I remember that first night, looking at all the technology surrounding his bed, lights glowing in the darkened room. It had a surreal quality, the feeling of another world, another universe.

Not everyone may find that they can do this. All the machines, the tubes, and the sight of their loved one can be more than they can bear. This hospital is new, 'state of the art", and the nurses so supportive, that I was indeed comfortable there. I remember the warm blankets brought for me to  rest under, and the hot tea given to me at 3 am that first morning. These are beautiful touches of care, not to be forgotten, in the midst of all that technology. A century ago, those kind of comforts were all that could be done for the patients themselves - none of the drugs, the surgical and intensive care expertise and equipment, existed.

The Heart of a Warrior,
Healing Once Again,
27 Years after His First Battle

Post Surgery Day 16 - Recovery at Home

Today is the 16th day following the day of surgery. With the attentive care of his surgeon and a home health nurse coming in, I am comfortable caring for him as he recovers. We just need to stay vigilant lest any complications should develop. From our own family and others, we know how nasty some of these complications can be! 

Overall the hospital was a great place to be as long as he needed that level of care, but there is just no place like home for recovery! 

I am not a nurse, and I admired many of the things nurses did for him in the hospital. However, I do tell my dear husband that no one else could ever put so much love into his care!