Get a good team

As a patient with a Chronic Illness, you need to remember two basic rules:

1) There are a lot of good doctors out there.

2) Some doctors are better than others.

Now the trick is to actually find a doctor who is in category 2! I’ve got a good Cardiologist: We were talking once about how long I had been a patient of his and I finally settled the debate. “You took over my care not long before that Fontan surgery went wrong in 1988,” I said.

“That one was my fault,” he said, completely serious but with a chuckle in his voice. “I’m the one who recommended that operation!”

True, he did recommend that operation, and I almost died on the operating table. But I’m not holding that against him – he had no idea that scar tissue was going to rip open when they cut through my breastbone. The hospital did all the usual pre-op tests, catherizations, and X-rays. No one saw the scar tissue. With the technology available in 1988, they may not have been able to see it.

My Cardiologist was at a world class hospital, and then he moved – a smaller hospital, but one interested in starting an Adult Congenital Cardiology program. You could tell they were not at the level of his former facility, but they were eager to learn, and part of his job was to teach them the correct way to do things. And later he moved yet again, to another world class medical center. When you have a chronic illness – especially if it is a difficult chronic illness, like a Congenital Heart Defect – you look for those big hospitals with a high volume of patients seen. And not just total patients, but patients with your problem, because the level of care improves as they treat more and more patients. They learn the best way to do things and care improves. Traditionally the surgeon gets the credit when an operation goes right – but he functions as part of a team. And everything – diagnosis, admitting, pre-op prep, perfusion, anesthesia, post-op care – all work together to get you on the road to recovery.

“Practice, practice, practice,” Coach John Wooden once said. “When you aren’t practicing, someone else is. And when you play him, he will beat you.”

So who do you want in your corner? The guys who see someone like you once in a while, or a team that fights this battle every day?

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