The Door of Hope - Surgery Once Again

Beautiful Pacific Coastline, Southern California

There are always memories, whenever we have reason to visit our local hospital. This hospital happens to have a beautiful natural setting, overlooking the sparkling waters of the Pacific.  My husband's heart experience began there so long ago now, in 1990. His first ever echocardiogram was done there at that time. 

Last Monday, February 20th, was such a day of memories, as once again we drove there and parked. It was time for another echocardiogram (ultrasound) of his heart. We are so grateful for a very special sonographer there, who over the years has so carefully taken the images of his heart. Once again she did her excellent work that afternoon and coordinated getting the results read and the doctors connected.

On Tuesday evening, the 21st, the results were explained to us, and it was clear that it is time to intervene once again. After 11 years, the artificial tissue aortic valve is severely narrowed and also leaking. The heart, especially the right side, is working very hard, there is back pressure affecting the lungs, and there may be some risk of another stroke if we wait! The good news is that his heart muscle remains strong and vigorous, and placing a new aortic valve will allow blood to flow properly again and address all these issues. If the mitral valve needs any attention, it will be addressed as well.

And so it is time for surgery once again. Having done this three times previously, we know what this means, but of course each time the body may respond somewhat differently. We look forward with hope that he will soon feel better with his heart and blood flow working properly again.

We understand that it is wise to do this soon and eliminate the threat of further injury. The arrangements are all in place for his surgery, 24 hours from now. All that is left is just to get to the hospital on time!

Without intervention, in 1990 my husband would have lost his life to heart failure. He was incredibly sick, with critical BAV stenosis at that time. We had never even heard of BAV until then, although we knew he had a heart murmur! 

Keep Hope in Your Heart!

Since then there have been 27 precious years, thanks to his heart surgeries. It is a great comfort that once again when he needs it so much, this surgical door of hope is open to him. 

This is why I write so often about hope. As my dear friend BJ shared with me once again with the picture here, always "Keep Hope in Your Heart".  I know there are so many in BAV families like ours, some just newly diagnosed, others facing another surgery. On the threshhold of my husband's surgery, his Door of Hope, may all who need it find their door of hope and receive the help they need.

Always,

Keep Hope in Your Heart,

~ Arlys Velebir

Bicuspid Aortic Valve - Our Dreams for 2017

On December 20th, 2016, the Dalton Daily Citizen brought back this column from 1990.  Lewis Grizzard: A Christmas dream    When Lewis Grizzard wrote this, his mother, father, and some of the others in his family he writes about were no longer alive. Yes, this family gathering for Christmas was only something he could dream about in 1990.

Lewis Grizzard was born with a bicuspid aortic valve. It is deeply touching to me to read this part of his dream :

 "I've got so much to be thankful for, this and every other Christmas.

 I've got my health. When I was 15, the doctors discovered a heart murmur.

 But it didn't turn out to be anything serious.

 I can still boast of the fact I've never spent one night in the hospital."

This was also only fantasy, just a dream. Lewis Grizzard had indeed spent nights in hospitals by then. He had already had two heart surgeries.  His first aortic valve surgery had been in 1982, with another just 3 years later. It had turned out to be "something serious" indeed.

During his life span, Lewis Grizzard would have a total of 4 open heart surgeries within 12 years, from 1982 to 1994. 

In this article announcing his death, Lewis Grizzard, Southern Humor Columnist, Dead at 47, his first heart valve surgeries, in 1982 and again in 1985 are mentioned. In 1993, he received a mechanical valve, as well as aorta repair and coronary artery bypass, a very large surgery. In February 1994, it was reported that he was hospitalized in Florida to deal with an aneurysm of the right kidney:  Lewis Grizzard in Critical Care at Florida Hospital February 1994 .  In March 1994, a very high risk surgery was done to deal with a "life threatening mass" in his aorta. This time an aortic valve from a human donor would be used (perhaps to be less prone to infection). Lewis Grizzard did not leave the hospital alive. His brain was too injured, due to lack of oxygen at some point. Perhaps particles from that "mass" had escaped during surgery and blocked blood flow in his brain? 

Lewis Grizzard Obituary (died March 20, 1994) following 4th heart surgery

Dreams for 2017

Just for  a moment, we can give ourselves permission to dream a "heart dream" too. Dream that our lives are not touched by bicuspid aortic valves, aneurysms, and surgeries.

There is no harm in dreaming, but we cannot linger there too long, in our dream world of the heart.

In these first days of the new year, let us resolve to do all we can to live fully, including being fully informed, as we embark upon the next part of our journey with BAV.

In the reality of our journey with BAV, some of us will be called upon to make important decisions this year. All of us in BAV families must take the very best care of ourselves possible, stay informed about our own bodies and about the research in progress that may change our futures, and seek the answers we need.

Living with a "special" heart does not mean that our dreams of time spent with loving family, of achieving things important to us, cannot come true. The number of leaflets of an aortic valve need not rob us of so many important joys and goals in life. May we find, after all, that even though we have imperfect heart valves and delicate tissue, that our dreams do come true in 2017!

Wishing everyone courage, strength, and joy in 2017,

~ Arlys Velebir