Sunday, January 8, 2012

Life from Death - The Contributions of Patients

There are two people that are very special to me. I know very little about them, not even their names. They made great contributions to medicine and surgery. No, they were not physicians. They were patients. They both lost their lives, and they both contributed to the care my husband would one day receive.

Death from a Torn Aorta after Valve Surgery
The first man was born with a bicuspid aortic valve. I believe it was sometime in the 1980's that he needed surgery to replace his aortic valve. He came through the surgery well and was moved from the operating room to intensive care. But sometime during that first night, things went wrong. By the time it was realized that his aorta had torn (dissected), it was too late - they could not save him. When I think of him, I only hope that lying in that hospital bed, probably still on a respirator and unable to speak, the drugs he was given for pain kept him from suffering and that he slipped away in peace.

A dissected aorta after valve replacement? This was not supposed to happen. Why did his aorta tear? There was a young surgeon at that hospital, still a resident. From that day on, this surgeon never forgot what happened to this man with a bicuspid aortic valve. He never forgot that those with bicuspid aortic valves may have abnormal, delicate aortic tissue.

Blood Pressure and Aneurysms
The second man was about 50 years old. He was an airline pilot, and like my husband, he had an ascending aortic aneurysm. He needed surgery and was sent to a surgeon for consultation. A surgery date was set, and the pilot would follow up with his other physicians regarding medical care and additional pre-surgical testing. Before his surgery date arrived, this man's aneurysm either tore or fully ruptured. He died.

From that moment onward, the surgeon vowed that he would personally manage the blood pressure of all his aneurysm patients prior to surgery. This video explains why.

In simple terms, it is similar to the balloons that I loved as a child - as I blew air into them, a point came when the pressure and size were too great for the wall to hold, and my beautiful balloons would burst.

A "Balloon" in my Husband's Chest
When my husband's aneurysm was diagnosed in 2001, we had no idea where to turn. The aortic aneurysm in his chest, just above his artificial aortic valve, had been "discovered" - it was not looked for intentionally. We confronted a vital question immediately - where could we find someone that could help him?

Prior to this, having been born with a bicuspid aortic valve had been spoken about in very optimistic terms.  That rosy view had lost its credibility with me. No one had linked the fact that he was born with a bicuspid aortic valve to a risk for developing an aortic aneurysm, although having read Dr. Abbott's work from the early 1900's, I know she clearly identified this risk.

Knowing he had a bulging aorta in his chest was one thing. Knowing that he had high blood pressure that was not being treated added to our desperation. (I just couldn't escape those childhood memories of my balloons abruptly bursting.)

Meeting an Aortic Surgeon
We walked into an office for a consultation with an aortic surgeon. On our own, without a referral.

Along with many questions I had, there were two major things I was looking for as we entered the surgeon's office: someone who appreciated the connection between a bicuspid aortic valve and aneurysm of my husband's aorta, and someone who would be concerned about my husband's blood pressure.

I braced myself for the response when we mentioned that my husband was born with a bicuspid aortic valve. Would there just be a "that's no big deal" attitude? And what about that high blood pressure?

Perhaps now is the time to tell you that, unknown to us, we had walked into the office of an aortic surgeon who as a young resident saw a man die from a torn/ruptured aorta after valve surgery. This was also the surgeon who was never able to help the airline pilot, because he died too soon. A surgeon who has never lost another aneurysm patient prior to their chosen surgery date, because he personally monitors their blood pressure and adjusts their medication.

Two men who died, and the surgeon who vowed that never again must such things happen - because of them, my husband received immediate, expert help with his blood pressure and the surgery he needed.

Becoming A Well-Informed Patient
It remains a tragedy that those two men lost their lives. I share their stories here, with tears in my eyes. I think they would want you to know and to avoid what happened to them. Tragedy is greatly compounded when we fail to learn from it, and stop it from being repeated. As patients, we can learn what is vital for our treatment and seek it out.

There have been many who have experienced aortic catastrophe. May our tears pay tribute in some small way to all who have gone before us. In recognition of them, we can become well-informed patients - seeking information, asking questions, and making informed decisions with the knowledge we have gained.

To that end, in 2012 the Bicuspid Aortic Foundation is launching an informational program called "The Well-Informed Patient". It is intended to save many lives. Our goal is that no one should die from treatable conditions. 

May life come from life, not death, as we share our lives together, creating a climate of hope.

Arlys Velebir
Bicuspid Aortic Foundation