Monday, September 3, 2012

Choosing your Doctors and Hospitals


Give a man a fish, and he will eat for a day.

We Have Something in Common
In some ways we are alike, in others we are different. But we all have something special in common in our chests - aortic valve disease, aortic aneurysm, aortic dissection. Sometimes, we have brain aneurysms too.

And so, we have something else in common.
 Decisions about who to entrust with our medical care.

Critical decisions.
Too critical to rely on a simple list of names. 

My Family Needs Help! Who Is the Best?
Like most people, we turned to local physicians when my husband became ill the first time. We learned that he was in heart failure due to a severely narrowed bicuspid aortic valve. At that time, we had no way of researching our options.

We simply went from the internist to the cardiologist, the cardiologist to the surgeon. You may find it hard to believe, but we did not even meet the man who would open his chest and touch my husband's heart until the night before surgery, already admitted to the hospital.

Years later, the internet had emerged when the aneurysm was discovered in his chest. This time I knew there was no one in the local community equipped to understand and help. But there was still very limited information. There were just scattered crumbs along the way that we used to reach the hands of a skilled aortic expert.

As I write this in 2012, we still do not have all the tools we need to help families like my own research aortic disease in the chest. But we do have some - and we can use them to find help.

Researching Your Options Learning to Fish!
The Foundation is often asked about finding physicians with expertise in aortic disease in the chest. Until recently there have not been many options - just a handful of major centers in the US pioneered aortic surgery over the years, while heart surgeries in most communities were bypass surgery, along with some heart valves.

When it came to bicuspid aortic valves, it was considered simple, something that did not need specialized attention. That is just beginning to change.

This is where the fishing lessons come in - we all need to learn how to find the medical expertise that can help ourselves and our families. It will continue to evolve, new expertise and capabilities will emerge. How will we know who to trust with our lives? It is not as simple as a list of names. We need to do our homework. The Bicuspid Aortic Foundation has updated it's  Support Community Page - there are some ideas there to help you!

                             Teach a man to fish, and he will eat for a lifetime.                    

Bob Gies Learned to Fish and You Can Too!
Look carefully and you will see the fish on Bob's line in those clear Montana waters! When he began to have symptoms, Bob visited several cardiologist and surgeon offices, looking for help, not satisfied with the answers.

Today, he has both local care and follow up as needed with a specialized bicuspid aortic valve program. But he had to search to find it!

Bob has care not just for one day, but for a lifetime.
He knows how to be an active partner in his own health.

When Bob approached the Bicuspid Aortic Foundation, he did not just receive a fish for one day. He learned to fish for a life time. Today, he volunteers with the Foundation, reaching out to others. He knows they too can learn to fish!

This is an important topic for us all. Please check back for additional future stories to help you in your search.

Best wishes from my family to you and yours,
Arlys Velebir
President and Chairman
Bicuspid Aortic Foundation

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