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.
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| 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. |
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.
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| 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.
