Bicuspid Aortic Foundation "Stories of Hope Jim Velebir"

Jim Velebir
August 2006

April 2006
About four and a half months after his stroke and two months after valve surgery,
Jim's therapists at Winways, a rehab facility, arranged an outing
Jim is not a fisherman, but he caught the first fish of his life - the only one caught that day!

My husband, Jim, had his severely calcified bicuspid aortic valve replaced in 1990. That was when the word "bicuspid" entered our world for the first time. Eleven years later, he underwent surgery again, this time to remove an ascending aortic aneurysm that very fortunately had been discovered.

Six months after his aneurysm surgery, in the fall of 2001, I shared his story on the aneurysm support web site maintained by Professor Bill Maples. You may click here to read that account, which was last updated in 2004. Here is our African Grey, mentioned in that story.

Our beloved African Grey, Petie, now 12 years old
This picture kept Jim company while hospitalized in December 2005

In that first account I wrote, I mention that we were told that Jim was "fixed" by that first valve surgery in 1990. The mechanical valve he received then was intended to be a life long solution (projected to last 150 years or more). But it has not been the case for Jim. We know now that one is never "fixed".

This year a cardiologist spoke very different words to us. He said that in having valve surgery, one replaces their own native valve disease with prosthetic valve disease - in other words, one is not "fixed". I also found this expressed in the new 2006 Guidelines for valve patients from the ACC/AHA, "Patients who have undergone valve replacement are not cured but still have serious heart disease. They have exchanged native valve disease for prosthetic valve disease and must be followed with the same care as patients with native valve disease (993). " Jim's experience certainly confirms these words.

It was in 2004 that a murmur was again heard in Jim's chest. Investigation showed some pressure increase across the mechanical valve - possibly because of tissue growing around the valve opening - something called pannus. The mechanical valve continued to open and close well. There was another new development - leakage of his mitral valve. The possibility of another surgery at some point because of these new valve issues now entered the picture. But something else happened before it was determined that surgery was needed.

My husband unexpectedly suffered an "extensive" stroke on November 30, 2005. There was no obvious reason for that stroke, but it was ultimately found that fine hair-like strands of tissue underneath the mechanical valve were the culprit. Normally someone would not have major surgery so soon after a large stroke. But as long as the mechanical valve with its strands remained in place, there was risk of another stroke. There had already been so much damage that I did not believe he would live through another major episode with those strands. His very survival was at stake.

So Jim underwent surgery in February 2006 to remove the mechanical valve. The aortic root was enlarged with a bovine pericardial tissue patch in order to make room for his new bovine pericardial valve. Calcification on one leaflet of his mitral valve was also removed. It was a complex surgery, made more difficult by the amount of calcification in the area surrounding the aortic valve. Expert hands made this difficult procedure a wonderful success. This surgery saved his life.

Compared to the many papers written on other topics, there is very little written about valvular strands. They are not visible to the eye so would not be seen in the surgical field by the surgeon. They would not be found in an autopsy. The only test that "sees" them is transesophageal echo (TEE), and as in everything, it requires skill to recognize them. It raises the question of how many strokes experienced by valve patients are thought to be related to improper anticoagulation when in fact valvular strands may be present. It is an unanswered question, and Jim finds himself again on the frontier.

Jim could have easily lost his life that day last November, when he collapsed to the floor in our kitchen. I found him there 8 hours later. His life was spared that day, and we trust that in our search for the answers of what happened to him, someone else's life may be saved also. Since this happened to him, valvular strands have been found in others.

Five years ago, when Jim's aneurysm was found, there was little information about the relationship between BAV and aortic aneurysms in the chest. Today, that has begun to change. Other areas, such as valvular strands, that today are obscure must also come into the spotlight.

These are life threatening issues - aneurysm, valvular complications, stroke - that Jim has encountered in his experience with BAVD.

Now, in August of 2006, Jim continues to work on recovery from his stroke and a TIA that he experienced a few days after surgery. His focus on the positive through out these last months has been a great help to his recovery and also to me. Hope is not an abstract concept, it is a sustaining force for us both. As we explore further steps in this journey, we continue to live in a climate of hope.

Arlys Velebir

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