"If you cannot do great things, do small things in a great way." - Napoleon Hill
The Search for Help
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| Diseased aorta, including ascending aortic aneurysm |
bicuspid aortic valve ascending aortic aneurysm
That is what I typed in the search engine in 2001. I found important answers from a somewhat surprising source. Williamsport, Pennsylvania, is a town of about 30,000 people. It is not the home of any famous heart centers. I am not aware of any well known heart specialists who practice there. There would not be any large research grants or costly, multi-year studies of patients happening there. But in 1998, cardiologists there published a paper that is very important. In 2001, it was this paper that helped us understand what no physician had explained to us: that someone born with BAV could have an aneurysm, and get into trouble, whether their valve has been replaced or not. Someone like my husband. After his successful surgery, I wrote to Dr. John Burks to request the full paper and thank him. I am forever grateful and will treasure this paper always. Just one paper, perhaps it may seem small, but it was done in a great way. I like to think it awakened others and spurred them to do more for those born with BAV.
Gone Fishing
Here I will spend a moment on our local experience. Once the CT confirmed the aneurysm finding of the echo, our internist suggested we contact the surgeon who had replaced the valve about 11 years earlier. Although we continued to search online, I did go ahead and call the surgeon's office. I remember telling the woman I spoke with that my husband had an aneurysm. I am not sure if she was a nurse or not, but there was a serious tone in her voice after she heard me say those words. She told me that the surgeon was out of town, on a fishing trip with the cardiologist that we also had met 11 years earlier.
This was a good thing.
We did not waste any further time with them. Today I know that there is nothing in their backgrounds that would particularly equip them to handle what some call the most difficult surgical procedure in the chest: aortic surgery. Years later, someone locally told me that this same cardiologist first referred them (adult man) to a surgeon whose specialization was in pediatric heart surgery! Then they were given another name, in Houston, of an aortic surgeon who had been dead many years. I suppose I was not surprised, but I was certainly saddened, at such inappropriate "help" being suggested.
Still today, I rather marvel that the internist did not have more knowledge or take more time with us. He was in many ways a very kind man, but clearly not equipped in the face of BAV and aortic disease. Kindness alone cannot save lives.
Regardless, it was time to move on. We were on our own.
Searching online, I discovered PubMed, the online US National Library of Medicine. What a treasure! I read that the aorta is replaced by a "tube" made of Dacron. I read about the aneurysm sizes at which the aorta is replaced. I tried out a calculation based on my husband's height and weight versus aneurysm size. Most of all, I searched for surgeons who did aortic aneurysm surgery in the chest.
Meant to Be
Did we really know how to look for help? Not very well, but we could follow clues. Today, when I think back to that time and all that has followed, the phrase "it was meant to be" comes to mind. We did not know then so many things, that eventually we would learn.
We did not know about the pioneering work of Dr. Randall Griepp in New York, and his collaboration with Dr. Nicholas Kouchoukos in St. Louis, among others. We did not know that Dr. Griepp had mentored Dr. Sharo Raissi in aortic surgery, and that Dr. Raissi had brought his exceptional aortic surgery skills quite near to us.
At a time when the bulging aorta, and worse yet, the horrendous bleeding emergency of aortic dissection, were viewed by many physicians with helplessness and dread, these skilled, courageous, and compassionate surgeons ran not away from the fight, but directly into it. They are the "special forces" of heart surgery - the most skilled, the bravest, the best. The biggest challenge yet today for those with BAV and aneurysm is getting themselves to skilled hands like these.
Perhaps some angels paved the way to Dr.Raissi's office that day. We were rather terrified really, consulting a surgeon on our own after being told years before "never ask a surgeon if you need surgery"! The aneurysm terrified us more.
About half way through that appointment with Dr. Raissi, I felt the icy fear begin to melt. We went home with blood pressure medication prescriptions and strict instructions to start them that very night! Wonderful! At last we had found someone who understood and cared.
Regardless of how it came to be, we know how hard it can be still today to find help. We share our story to help others who also must travel this road after us.
Here is a video where I describe our search and aneurysm surgery experience.
I also mention here that this aneurysm surgery was not the end. My husband would need another valve surgery just 5 years later, in 2006. Perhaps it has taken all these years, and we are still learning today, the reality that some born with BAV are never "done"!
Best wishes to all who read this, in this New Year of 2015. May you have happiness, good health, and be led to those who can help you in your time of need.
- Arlys Velebir
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