Monitoring Will Always be Needed - Special Considerations for BAV

[Arlyss]

It is very concerning to me to read of others who were told something similar to what we were regarding my husband in 1990. In a nutshell, it was: You're fixed. Your new valve has never failed in the laboratory and will last over 100 years. Take coumadin, and go on with your life.

We had good years when that seemed to be the case, but if you look at what has happened to my husband since 2001, listed below my signature, you will see it has turned out rather differently. I want as many people as possible to be alerted that there is much more to the story for those with BAV. No one can predict what might be ahead. We are very grateful that my husband's life has been extended several times, but this means there is no "history" of what will happen next for someone like him. In the past, they did not live.

It is very appropriate that there is so much discussion today about the choice of valve used for replacement. There are more options today, because there is more information about what has happened with the passing of time - some tissue valves have proven to last longer than once thought possible, mechanical valves are not "forever" in many cases.

Everyone who has had valve surgery needs lifelong follow up. The 2006 guidelines for valve patients make that clear.

For those with BAV, no matter what choice you make regarding valve replacement options, and no matter how good you may have been told your aorta looks at the time of surgery, you (your heart valves, your aorta, your head and neck vessels) should have lifelong monitoring with diagnostic imaging. Why? Because "problems" not just with valves but with the tissue of these major arteries - aneurysm, dissection - can lead to injury and death. It doesn't have to, if one is proactively watched and aware of the latest knowledge.

This comes to mind because I have heard of BAVs and heart transplant - where the replacement was of course not just the valve(s), but the entire heart. But the abnormal tissue associated with BAV was of course still there in the aorta, and over a number of years, an aneurysm developed. Just a reminder that no matter what, please be sure to be on a regular follow up program for your blood vessels, if you have BAV.

Also, there is a paper that I find very important - published earlier this year. This is not just for those with BAV. It mentions the valvular strands, as well as pannus, that can develop with prosthetic valves. (My husband was the first of 4 people I know of in the last few months to need the mechanical valve removed because of strands.) Because this information is so new, I encourage everyone to print it out and share it with their physicians.
Here is the link to a PDF of that paper
http://www.bicuspidfoundation.com/Evaluation_of_Prosthetic_Heart_Valves_Van_den_Brink.pdf

Best wishes,
Arlyss

 

[jbrown413]

i second arlyss' opinion...

i second arlyss' opinion...

those of you who know of me, can skip this paragraph. i was born with a bicuspid aorta valve in 1955. i was told thoughout my life, that when it wore out, they'd pop a new one in there. that came to be on dec 12, 1995. in january of 1999 i went for a follow-up echo, and was told by a cardiologist i "no longer needed a cardiologist". i went on my merry way for 8 years. this year, as part of my new years resolution (having just turned 50), i decided to get on top of some health stuff. you know -- the 50's kind of stuff, get a colonoscopy, see the dentist more, get new glasses, and take a peak at the st jude heart valve that was now 10 years old. after making the cardio appointment i posted here at vr.com, asking what i should be looking for. i was told of the increased risk of aortic aneurysms in people who have had bicuspid aorta valves replaced. i went to the cardiologist in march of 2006, told hime what i had heard, and he thought i was crazy. because of that i put off the echo i had to insist upon until golf season had ended. i had it early nov of this year. within a week i had a CT scan, which found a 5.8 cm ascending aortic aneurysm. i am having an aorta graft replacement on jan 3rd at MGH. but first i have to have all my teeth pulled this coming wed, there is no time left to do any periodontal work that could save my teeth. and because i was not monitored during this time, we have no idea how fast the aneurysm is growing. this is especially bad since my aortic arch now measures 3.2 cm, slightly larger than expected, but we cant tell if that should be replaced at this time. thus, i may have to have not only this second ohs, but a third someday. all because my cardiologist sent me home one day saying all was fine. so please, dont let this happen to you or someone you love -- joe