Lessons from my father

December 3, 2010

One physician and his physician wife made a pledge early in their careers that they would not treat family members.

My dad first started having difficulties 5 and a half years ago. His health problems coincided with the birth of my youngest daughter. As my wife was wheeled into labor and delivery, my dad was wheeled into the emergency room. They both were admitted to the same hospital, with my wife on the 4th floor and my dad on the 3rd floor. In between contractions, I would go downstairs to check on my dad, then run back upstairs to make sure my wife was all right. By the end of the night, I think I actually started telling my father to push, prompting him to ban me from the room until after the baby was born.

My dad was very weak when he entered the hospital. His blood work showed that his hemoglobin level was only 6.0 g/dL. It was soon discovered that he was bleeding in his gastrointestinal (GI) tract. He had an extensive GI work up, which revealed that the bleeding was from arteriovenous malformations (AVMs) in his small intestine.

Heyde's syndrome is the association between bleeding AVMs and severe aortic stenosis. It is believed that the narrowed aortic valve destroys von Willebrand factor, making these patients much more prone to bleeding. The good news is that once you fix the valve, the bleeding stops. The bad news is that you need to fix the valve.

My dad was considered a high-risk surgical candidate. In addition to his severe aortic stenosis, he also had severe emphysema. If you factor in his persistent bleeding and his low blood pressures from the bleeding, you can understand why the local surgeons were hesitant to take on my father's case.

BECOMING AN ADVOCATE

It was at this point that I became tormented about what I should be doing. If I pushed for surgery and it didn't go well, I would feel responsible. If I didn't push for surgery, things would eventually go bad, and I would feel responsible. Either way, I felt the decision rested on my shoulders.

This was where my wife set me straight. She reminded me that it really wasn't my decision-it was my dad's. My role was to be his advocate and, according to my wife, what better advocate can a person have than a son who is a physician? My job was to help him fully understand the medical issues, to make sure he was seeing the very best specialists, and to logistically help him schedule tests, make appointments, and deal with insurance issues. Ultimately, he was the one making the major decisions, and I was his medical "sous-chef."

With my new role better defined, I presented my dad with the options. He could continue on as he was currently, which would likely result in re-admissions to the hospital and a gradual decline in his functional status, or he could have a high-risk surgery that could kill him but, if successful, would solve his problem completely and return his quality of life. He thought about the options, asked appropriate questions, and then decided on option 2. He told me that he needed to become acquainted with a new granddaughter, and he wasn't ready to die yet. He asked me to find him the best surgeon on the East Coast.

His surgeon was good. He exuded confidence, and he boldly predicted that my dad would do great with surgery, which he scheduled for the following week. As promised, the surgery went off without a hitch, and most surprising, his postoperative course was uneventful as well. My family felt as if we were defusing a bomb and had just cut the red wire. We were waiting for the boom, faces squinted, shoulders shrugged, but then the countdown clock stopped. Nothing happened. No boom. No complications. My dad's condition stabilized, his bleeding stopped, and after a few months, he started feeling like himself again.

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