Continued Thoughts and Prayers for Adam

Adam was slated to have surgery last week.

Plans sometimes change due to circumstances beyond our control.

That is what happened to Adam.

He is now scheduled for surgery early Monday morning.

Our thoughts and prayers are with him, his family,  and his surgeon. 

The Three W's: What, Where, When

Coming to grips with having open heart surgery is a process, except in emergency situations. Adam had done this once before, when the aortic valve he was born with and the bulging aorta above it, needed surgery. That is how we at BAF first met Adam, as he researched information as part of his decision making process. 

This time, with infection in the picture, surgery needed to be done promptly to fully vanquish the bacteria and put a new, undamaged aortic valve in place. When was to be last week. Where was also settled - Adam lives in an area large enough to have not only an infectious disease specialty center, but also a skilled aortic surgical specialist. Peace with the What (mechanical, homograft, Ross procedure, bovine, or porcine for the new valve) also finally came after weighing the choices carefully.

Valve choice decisions, so many years after the first prosthetic valves were implanted decades ago, remain a thoughtful, individual decision based on many factors. As I heard many years ago now, there is no perfect choice! That is true, but there are many good ones.

When infection enters the picture, as it has for Adam, the considerations are altered. The risk of life-threatening infection returning and destroying the new valve weighs heavily, along with other factors, on the decision-making scale.

Ready for Surgery - Let's Get This Done!

With the help of his physicians and his own reading, Adam was at peace last week and more than ready very early the morning of surgery. By 6 AM he was prepped for surgery, partly sedated, and then . . . . he waited. And waited some more and some more . . . .

Finally, as morning faded and turned into early and then late afternoon, plans were abandoned for Adam to have surgery that day. His surgeon had been working to save someone else all those hours.

Adam says that whoever the other person was, they needed the surgery more than he did.

Adam's Turn - Monday Morning, June 10th

Adam will be ready once again, very early Monday morning. May it be his turn this time, since no one wants any complications to hurt him before the damaged valve with vegetation still clinging to it and any other remnants of infection are safely removed during surgery.

The plan is that Adam will have the Ross procedure. He has a skilled surgeon who will do all that is needed during surgery to clear the infection and save Adam in the best possible way.

Adam

Adam is a strong man, muscled and physically vigorous, with lots of energy! He is a loving husband and father, very much loved and needed. He is still young, with so much to accomplish.

How could it be that he has been so attacked by infection? He does not know how it got into his blood. Once finally diagnosed, he found that he was not alone, that there were so many at the infectious treatment center with their PICC lines in place, being treated for dangerous infections. 

Looking back, he says that, knowing what he knows now, with the first fevers he would have gone to the hospital and requested a blood culture be drawn. It is important for all with prosthetic or abnormal (bicuspid aortic) valves to realize that infection in the blood stream is a formidable enemy that does not play fair. The sooner it is found and treated, the better!

We join together in support of Adam and his family, 

asking that he have a safe, successful surgery, 

and that Adam will soon be home again, 

restored and infection free.

~Arlys Velebir

                           Bicuspid Aortic Foundation

Our Thoughts and Prayers for Adam

Red Jasper
The Warrior's Stone

It is special to hear from someone again after many years.
Sometimes it is good news, just checking in to say how well it is going.
Sometimes it is far from good news, it is heartbreaking.
That is when we are reminded why BAF exists.

I spoke with Adam today. He had his aortic valve and aortic aneurysm replaced in 2006. He was so young when he had surgery, just 30 years old. A checkup last November showed his prosthetic bovine aortic valve, over 12 years old by then, still holding up well.  He and his wife have a lovely family of four children. Life had been good!

And then without warning, everything changed.

Infective Endocarditis (IE)
 Beginning in early January, Adam ran a fever and did not feel well. He went to a doctor, who prescribed an antibiotic. It did not help. He continued to run daily fevers. He saw a second doctor, then a third. The medicines prescribed just did not work.

Finally in early April, three months from the first onset of fever, a fourth doctor diagnosed the problem: infection in his heart valve, endocarditis.

He has finished a course of intravenous antibiotics and now faces surgery. There is a question about the best option to replace the damaged bovine valve. There is some controversy that makes the choice difficult. The reason is that once the heart has been infected, there is an increased risk of getting infection there again.

Yes, infection changes the picture, because infection in the heart may be deadly. No one wants another infection there, and it dominates the thinking and planning for surgery.

Bacteria in the Blood
How did Adam get this infection in his heart? He does not know how it happened. Maybe a small cut or break in his skin. Somehow, the bacteria entered his blood. As his blood washed over the bovine aortic valve surfaces with each heart beat, some of the bacteria "stuck" to the valve surfaces.

Over time the bacteria grew entrenched on the valve, damaging the leaflets, forming clusters called vegetation. The bacteria may also hide in crevices that are not visible or easily reached by antibiotics. Surgery is aimed at addressing all of these issues.

Endocarditis Increasing
While many things may have been conquered or at least reduced with time, endocarditis is not one of them. It is actually increasing according to medical articles such as the following.

Endocarditis: An Ever Increasing Problem in Cardiac Surgery

Current practice in prophylaxis of endocarditis: are we running into trouble?

Only the introductory text is available to the public, but these example articles speak to the increased risk of infection in the heart.

Cleveland Clinic has an endocarditis center, where more information is available.

Thoughts and Prayers for Adam and his Family
Adam is in the midst of working through the three W's: What, Where, and When surgery will be done. Surgery must not wait because of the vegetation still in his heart, so the what and where need to be settled quickly.

At the same time, this beautiful family has just learned that their little daughter, age 2, has leukemia.

Yes, this father, his little daughter, and this entire family will appreciate positive, loving thoughts and prayers today and in the days ahead.

Surrounding them

 with positive thoughts and prayers,

we Create a Climate of Hope.

~ Arlys Velebir

                           Bicuspid Aortic Foundation

*Originally published under the name Aaron, BAF now has permission to use his actual first name, which is Adam.