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.

Fever

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."

Sepsis

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,
always!

Imperfect Heart Valves - Treasure the Ordinary Day

Background


With every beat of his heart, my husband's bovine aortic valve leaflets open and close. He received that valve 10 years ago. Statistics gave us hope then that, given his age, this valve might last about 20 years.

 Statistics are just that, nothing more.

 They are not promises.

 After just 8 years, there was evidence that one leaflet had begun to deteriorate. And we have been told that artificial tissue valves can fail suddenly.

Can We Avoid An Emergency?

Mechanical valve removed from my husband in 2006

We have already been through urgent situations because of his aortic valve. First it was his own BAV that put him abruptly into pneumonia and heart failure.

 Then, 15 years later, it was complications from scar tissue (pannus) and strands on his mechanical valve that injured him, sending particles to his brain.

 Each time, we were blindsided by the suddenness. Now, with this tissue valve showing a problem, is there anything we can do to be better prepared?

Sudden Failure

I am thinking of two people with bovine valves whose symptoms became severe suddenly. They found themselves urgently needing another surgery. One, a woman, had "redo" surgery locally to replace the valve. She was too sick to travel anywhere else. The recovery was not easy, but her life was saved.

 And then there is a young man. He developed severe symptoms, in a place far from the surgeon who performed his first surgery. He had to make a difficult decision. Step on a plane and fly for hours to reach his surgeon again, or entrust himself to whoever was local. He stepped on the plane. I still remember the relief I felt when I knew his plane had landed.

A failed bovine valve that required urgent removal

Knowing this, I wonder, can we know ahead of time, before it is urgent? We have been told that one reason for sudden problems is calcification buildup at the "hinges", the bottom of the leaflets where the tissue bends as the leaflets move. And when the valve leaks (regurgitation, insufficiency) for whatever reason, severe trouble can develop. These are two key things (the hinges, the leakage) that help me understand, removing some of the fear that comes with uncertainty and mystery.

Keeping Watch

When he first received this bovine valve, because of the severity of what happened with his mechanical valve, he was watched closely. Then it was checks just once a year, as things continued to look good. Just when we might begin to think all was well, there was the damaged leaflet!

These last two years, his bovine valve has been watched more closely again. The interpretation of his regular echocardiogram was rather alarming two years ago. A TEE (transesophageal echo, which requires anesthesia) was more re-assuring. The damage to that  leaflet is at the top, not at the hinges!

This leaflet does not move far enough to open as fully as it should, but the other two leaflets do. All three of them close well, so there is no significant leaking.

Another echo followed by a CT scan recently showed the valve about the same. Good news, for now!

Imperfect, Life Extending Solutions

I remember again how we were told 26 years ago that he was fixed for life. Today we know that for my husband, these artificial valves, first a mechanical and then one made of bovine tissue, have been life saving but imperfect solutions.

Coping in Our Three-Foot World

In the book No Hero, Mark Owen writes in chapter three about fear and the three-foot world. It is something he learned in rock climbing training. Not to look down, not to look off in the distance, not even to look for help from others. Focus on the things within reach, things that you can do. We can do that!

In our three-foot world, we do not have to live in fear of things in the distance that no one can control. Here is what we can control:

• living a healthy lifestyle
• monitoring blood pressure and taking blood pressure medication accordingly 
• listening to his body, knowing that even mild symptoms are messengers
• keeping appointments to check on the valve
• learning from information as it emerges about artificial heart valves 

Treasure the Ordinary Day

This thought comes from a Swedish proverb. It would be so easy to forget that every ordinary day  is special, a treasure. For us, a day when, with every heart beat, an imperfect valve opens and closes well enough to make it a perfect day!

With very best wishes to all who,

like we do,

 live each day with an imperfect heart valve.

 May you have many perfect days.

~ Arlys Velebir