Monday, September 5, 2011

Bob Gies, BAV, Aneurysms, and the White Cliffs of the Missouri

In September, Bob Gies always does something special on his birthday - he paddles down the Missouri River, past the amazing White Cliffs described by Lewis and Clark. This year, as he turns 67, this 40 mile canoe trip is extra special. The rock formations are a little more spectacular, Montana's big sky a little bluer, and the company of his wife and friends extra sweet as they paddle along and camp together. Why? Well, he missed doing this last year, for a very good reason. He was still recovering from surgery - major surgery that among other things removed an aneurysm in his chest. 

A Young Athlete with a Heart Murmur
Bob has always been active, athletic. Even as he marks his 67th year, those many years younger can't keep up with him. But there was a period of time when Bob wasn't sure he would see this day. There were times in the past when Bob was afraid - afraid of something wrong in his chest, something he didn't fully understand. 

Looking back, Bob remembers being told he had a heart murmur when he was just 14, during a physical before playing football his freshman year in high school. He was told he should be fine, and played football all four years.  Bob always came through when they needed him. As a senior, he rushed over a mile.  All these years later, everyone remembers that while others were good, Bob was an outstanding athlete in school. Bob still describes himself as always going all out in everything he does, pushing himself to the wall. After high school, he turned to hiking, biking, skiing, and fishing, which became lifelong activities.

Bob in June, 2011
After college, Bob and his wife lived briefly in Australia and New Zealand, but ultimately returned to their Montana roots, settling in the western part of the state, where the mountains provide the perfect setting for outdoor activities. He continued to be active into his 50's - pushing himself to the max and leaving those younger behind him.  He remembers starting to feel tired as he approached 60 and chalked it up to just getting older. He found himself needing a nap and decided to sell his business. Then, in his early 60's, something happened that frightened him. 

What Happened to Superman's Cape?
He was skiing with a friend on Lolo Pass when his heart rate jumped and pain in his chest traveled down both arms. In those moments on the mountain, Bob first seriously realized he might not be Superman anymore - something had cut off his cape. He returned to the car, took aspirin as a precaution, and when everything went away, chalked it up to indigestion. All was good until six months later when his heart began to race again. This time they had finished skiing, and Bob was driving down from the Pass. They switched drivers, and that time too, it went away.

Bob skiing again, the first winter after surgery
By the third time it happened, the snow was gone, and he was biking with his nephew. They were riding in the hills around town, nothing too steep, when his heart beat accelerated. This time, being nearby he decided to go to the hospital and be checked. At the onset his pulse was 220  - arriving at the hospital, it was still 196.

Hospitals and Doctors - A New Experience
Bob hadn't been in a hospital since he was born, and rarely had reason to see a doctor. As he stepped through the hospital door that day, that began to change. Ultimately he would seek several opinions, trying to understand what was happening in his chest. A whole battery of tests were performed. His heart murmur was brought up again, and he learned he had been born with a bicuspid aortic valve. The rapid heart beat episodes were given a name - "supraventricular tachycardia". With the tests and opinions, there were different solutions offered - an ablation for the rapid heart beat,  surgery to bypass a blocked artery in his heart and replace his bicuspid aortic valve.

Somehow, Bob was not satisfied with what he was hearing. At times he felt pressured to do something, which only made him more skeptical. One doctor told him he could wait until he couldn't walk to his mailbox anymore to have surgery, not an appealing thought for an active man.

 He kept researching his options, but life was difficult. Not knowing when his heart might begin to race, and the terrifying feeling when it did, made him very  uneasy. When he visited his daughter in California, he would ask how far it was to the nearest ER. He began to feel like an emotional wreck.

In early 2010, he was desperately searching for answers and mentioned his BAV to a lifelong classmate and friend whose brother happened to be born with BAV - who pointed him to the Bicuspid Aortic Foundation. In March 2010, when Bob visited his daughter in southern California, he brought his test records and images with him, and a CT scan and office visit were arranged with Dr. Sharo Raissi. There it was confirmed that Bob did indeed have a BAV, but something else was explained that Bob had not been told despite multiple opinions. Bob's ascending aorta was bulging - he had an aneurysm in his chest. Fortunately, unlike many of those with BAV, Bob has low blood pressure, a good thing when there is weak aortic tissue.

Bob Chooses to Have Surgery
It was explained to Bob that in one surgery, three things would be addressed: his bicuspid aortic valve, his aneurysm, and his rapid heart beat. His BAV would be replaced with a bovine tissue valve, his ascending aorta would be replaced with Dacron under total circulatory arrest, and his rapid heart beat would be corrected with a Maze procedure. It was confirmed by both a cardiologist as well as the surgeon that there was nothing of concern in the arteries of his heart - no bypass was needed.

Bob returned to Montana and made plans for surgery. He wanted to recover during the summer and be well on his way to activity by fall. And that is what happened!
Back on his bike, September 2010 

The Fear is Gone
Bob had surgery in May 2010, and recovered at his daughter's home. Returning to Montana, he spent the summer in cardiac rehab, while gradually increasing his activity. He learned to listen to his body, to pace himself as it healed. He was especially happy to hear how well his heart looked electrically. The rehab staff raved about the perfect tracings on his EKG. No more fast heart beats! By September and his birthday, he was biking again, but not yet ready for strenuous paddling down the Missouri. But he had a goal to aim for - seeing the White Cliffs in 2011!

Bob's first winter after surgery

By the time there was snow in the mountains, Bob was back to cross country skiing! In his first winter after surgery, he totaled 296.4 miles on skis, travelling between 4 and 12 miles in a trip.

Information Made All the Difference
Today, Bob credits the information he received from the Bicuspid Aortic Foundation as the first step in finding the solution he needed. He did need: replacement of his calcified BAV, removal of his ascending aneurysm, treatment for his tachycardia. He did not need bypass surgery (or stenting) of his coronary artery.
Bob fishing in 2011

The View from Here . . .
Perhaps if Bob had died suddenly on that mountain, in the absence of an autopsy it would have been ruled a heart attack. It would have been a great tragedy for us, because Bob is very close, like a brother, to our family. The classmate that pointed him to the Foundation is my husband's brother. It would have been crushingly devastating if I had learned too late that Bob had a heart murmur due to a BAV, but had never been screened for an aneurysm. I would have wondered if his aorta dissected or ruptured, and if his calcified BAV contributed to his sudden death. Today, we are all very grateful that is not our fate. Tragically, it continues to be the fate of too many with BAV and other forms of thoracic aortic disease.


The Montana skies were never more beautiful, the cliffs more enchanting, than when Bob floated down the Missouri this September, past the beauty described by Lewis and Clark so long ago.

Bob, you are an inspiration to us all.

Arlys Velebir
President and Chairman
Bicuspid Aortic Foundation

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