Friday, March 09, 2012

The Journey We Take Alone -- Part 20

By Alexander "Sandy" Prisant

It was about 10 minutes to 6 in the morning when my arm woke me.

I was lying in a hotel room in Boston. It was December of 2002. I was experiencing a steady pain in my left arm, not sharp but not dull. I lay back. “What was that old rule? Wait for half an hour and if your upper left arm still hurts you’re probably having a heart attack”. (Much later, I learned this does not apply to people who have already had major heart surgery. People who have already had major heart surgery should get help immediately.)

But back in Boston, it was now 6:20 a.m. Based on my wrong-headed do-it-yourself doctoring, time was up. I rolled over to face Susan: “Hon, I’m having a heart attack.” Susan has had a lifetime of me saying strange things like this to her. She doesn’t flinch.

As I reached for the phone to call the desk, she was methodically waking and moving out of bed toward the closet. She was picking out my matching shirts, socks and slacks for the hospital. She knows her mate.

There was a knock at the door, but it wasn’t the paramedics. It was two fireman dressed in full gear, right up to the big hats. They strode past the bed and stood over near the bay windows. Taking their positions, they stared at me, but said nothing.

Minutes later, the ambulance crew arrived with a rolling gurney. The firemen, apparently there because of a union dispute over which city service could respond to emergencies, continued to gawk. I never saw them again.

The EMS team rolled me down the elevator, through the lobby and into the ambulance, parked at a discreet underground entrance. When the doors closed the paramedic leading the team said, ”The closest hospital is New England Medical Center (Now Tufts Medical Center). Where would you like to go?”

In one way, chronic illness is like the rest of life. Sometimes you have to be lucky. I was in Boston for the first time in years and, of all places, I was having my first heart attack here.

“Mass General,” I replied. The paramedic almost smiled. That’s where I’m going,” she said, “when I have my heart attack.”

What are the odds that anyone will be within 10 minutes of one of the very best hospitals in the world when a major cardiac event hits? By the time we reached Massachusetts General, there was no more pain and I was feeling in very good hands. After all, this is the teaching hospital linked with Harvard, what more do you want?

As they worked on me in the ER, not frantically but professionally, I saw Susan over a doctor’s shoulder, on the phone. She was calling our cardiologist, Eddie Anderson. It was 5 a.m. in Palo Alto, California. She passed the phone to a doctor, who took a quick history from Eddie. I felt calmer than I probably had a right to be.

Indirectly this heart attack had been caused by my lifelong kidney ailment. In an age of specialization when doctors are focused on only their organ of choice, somebody’s got to look out for the other parts. A lot of things that can help a wounded heart are not at all good for the kidney. Unlike some places, Mass General knows this. They sent two cardiologists to my room, but with them a respected nephrologist, Dr. Myles Wolf. Though young, he was already an Assistant Professor at the hospital, an Instructor at Harvard and he had links to MIT. He has since received numerous awards in every aspect of medicine—as a teacher, researcher and clinician. In 2009, he was elected to the American Society for Clinical Investigation, one of the most prestigious medical honor societies.

Dr. Wolf was my defender, keeping the cardiologists away from treatments that might be nephrotoxic (harmful to the kidney). In the end every medication you take for anything works its way through to the end of the system and the gateway -- your kidneys. If the “gate” is shaky, you need a gatekeeper, looking out for it. That was Myles Wolf. We’ve known each other for a decade now. Dr. Wolf was cherry picked to become Director of Clinical Research, an Assistant Professor and an assistant dean at University of Miami Miller School of Medicine. He continues to know more about more organs than all the doctors I formally work with.

Within 36 hours of admission however, it was clear there was a problem that Dr. Wolf couldn’t solve. Some of the vessels supplying the heart were becoming blocked. I would need another open heart surgery—another triple bypass.

This is where it got tricky. This is where I had to make a choice. Alone. The kind of choice you may have to make some day. The doctors won’t make it for you.

A self-confident gentleman came into my room on the third day and introduced himself as the cardiovascular surgeon who would operate on me. He tried to reassure me, mentioning that my first heart surgeon was an old friend. He’d even had dinner at Dr. Vincent Gaudiani’s California home. Fortunately, he then sat down and explained in detail what he would do. He even predicted the vessels he’d take from my leg to put in my chest would last for seven to nine years. That discussion was 10 years ago.

When a surgeon is willing to talk, be quiet and listen. Without going to medical school you may hear something that helps you work out what is really going on. This surgeon had said something we didn’t understand. He mentioned inserting some kind of heart assist device without explaining why. Questions swirled around—I’d already had this operation seven years before, why was this one being done differently? Was I going to be a research subject for this man’s latest technique? If I was uncomfortable with this guy, did I have any options? Was it realistic to fly out of Boston with my heart in this shape, to do this elsewhere?

We needed a second opinion. We called Eddie Andersen and laid out what we’d been told. Eddie had been receiving reports from Mass General. He wouldn’t come down for or against any surgeon, but based on what he saw he intimated there were options with some risks. For one, we might be able to come back to California and go to Dr. Gaudiani.

With echoes in my mind of what my father must have gone through when I was an infant--seeking advice everywhere for a risky surgery--we talked to anyone we could find, even in this hospital away from home. Mass General’s rabbi appeared in our room; we pounced on him in search of wisdom. We talked to everyone. Doctors propose options, but these days the patient literally has to sign on the dotted line. Lay people have to make the decision and accept liability in every sense of the word.

In the end Susan and I decided to go with what had worked before. We opted to go back to Dr. Gaudiani in California, even though it put my heart at risk on a 3,000-mile plane ride, complete with oxygen. Even though it meant delaying surgery for a few weeks. We decided to go with someone we knew, rather than the unknown.

This is a world with fewer “permanent cures” but many ways to “extend” or “improve” a patient’s life. We are sometimes offered subjective odds of success from well-meaning physicians for wholly subjective outcomes. This even applies to the most fundamental issues: risk, survival, longevity.

We may cling to an offhand suggestion that this procedure has a five percent better results than that procedure. But we may be kidding ourselves. Just this afternoon—in another place and another situation—a cardiologist said to me: I’ve given up paying much attention to those predictions for my patients. They’re often wrong.”

So then, what’s left for lay people to hang onto? Probably the same tools you use to pick a dry cleaner. Go with what you know. If someone’s done a good job before, stick with him until they don’t do a good job. I know. A lot could be riding on it.

While it might seem like an insignificant decision at the time, in medicine it rarely is. What would have seemed more innocuous than deciding whether or not take the last free seat on the plane with Buddy Holly and Richie Valens?

This is the stuff of real life--part of the journey we take alone.

Writer Sandy Prisant has for most of the last year been engaged in a writing project he has called possibly his last. A lifelong survivor of a serious kidney ailment, he is now on dialysis awaiting a double transplant, kidney and heart. He and his wife, Susan, live in Florida and are both writing. To read their work, go to the Search function on MyStoryLives, and type in each of their names.

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