MGH--February 2004

When I was a senior in medical school, the Chief of Medicine called me in to tell me that he was giving me his personal recommendation to  the Massachusetts General Hospital. I was to be the standard bearer for my medical school, blazing the trail into America's most prestigious hospital. I went for a series of interviews, but ultimately ended up at BU. The General seemed too large, too unfriendly. BU seemed more manageable and accessible. People all knew each other, and seemed warm and kind.

Still, when I went to MGH in 1980 for a routine post-coronary heart catheterization, people seemed efficient, flexible, warm and kind.

There are certain books and films that have an uncanny ability to predict the future with all its horrors: A Clockwork Orange, 1984, the movie Network, where TV news becomes entertainment, and the film Hospital, in which George C. Scott watches his quality hospital crumble before his eyes.

So here I was back at MGH, with a week's workup planned to see if I were eligible for a transplant. Things started well, and I went directly to the Cath Lab for a right heart catheterization. It was done painlessly under Versed. I returned to my room. I was supposed to receive 15 meals that week. I got 5. Carol had to go down to the hospital cafeteria to get me some food. What meals I did receive were the antithesis of a renal diet--a baked potato, minestrone soup, tomatoes. That night, I was getting some cranberry juice, but the nurse told me I was NPO after midnight, since I would be going directly to dialysis in the morning, and then to a specialized stress test that Dr. Dec considered very important. I told her that I would hardly do well on a stress test after dialysis, which wipes me out by itself, let alone the lack of food or drink for 14 hours. I asked her who my care coordinator was, and she said that they didn't have those at MGH. The following morning, Dr. Tsai, the intern, told me the same thing. Gone were the days that when the intern ran the case. He said that the calls come from the labs, and I am then sent at their request. To his credit, Dr. Dec visited daily. He confirmed the scenario, but seemed resigned to it. Most of the time for a test was spent waiting for transport, sometimes for an hour and a half. Once again, Carol, without whom I would never have survived, would steal a wheelchair and take me herself, so that I didn't have to wait in a cold corridor for someone to show up.

I saw an endocrinologist, who recommended a bone density tests and a parathormone assay.

I saw a neurologist, who recommended an EMG and nerve conduction studies, but not until I built up some more platelets.

They woke me at midnight for an MRI of the neck (which I had done in Providence, but it lacked the MGH imprimatur.) They slide you in this tunnel, into which you just fit, and for 40 minutes you undergo the loudest clanging and banging you every heard. "Don't move." Then you wait in a cold corridor for an hour and half for transport.

The best part was the dialysis, I was assigned a renal fellow and an attending nephrologist, a really nice guy, Dr. Goes. They dialyzed me daily for 4 hours. They introduced me to the concept of a sodium gradient, where they build up and then reduce the sodium in the dialysate. In 5 days, they took off another 20 lbs. of water without any cramps. Dr. Goes warned me that the sushi and oysters would have to stop after a transplant because the lifelong immunosuppressive therapy would make me vulnerable to parasitic infestation.

I saw a lovely psychiatrist named Purcell, who agreed that I was a nut case, but assured me not to worry, since they never listen to what he has to say.

Despite a large sign over my bed, several nurses and aides attempted to take my blood pressure over my newly created fistula.

I had pulmonary function testing.

The long-awaited oxygen consumption stress test arrived. In his haste. the technician pulled out my one good i.v. access, which had to be reinserted. They seat you on a stationary bicycle, inject you with an isotope, and have you lean into a scanner, hook you up to a scanner, then to EKG leads. You breathe in and out of a tube. They ask you start pedaling into no resistance, which I was able to do. The resistance gradually increases, and you signal them when you think you have a minute left. I signaled, and the three of them start to cheer you on, "Come on, push, the last minute is the most important. You can do it." When I stopped pedaling I noticed what I had always suspected, my breathing was not at all labored, and while right heart failure is certainly present, it's the neuromuscular disease--post-polio if you like, that is the primary limiting factor in my ability to walk. A $25,000 test to document this.

The most important test, the tissue typing and antigen sensitivity was drawn on Monday. In dialysis on Friday, they drew blood for the same test. It seems that the original blood had been lost. Eric Putnoi told us that when they replaced the manual elevators that  provided patronage jobs with automatic elevators, thousands of test tubes of blood were found at the base of the shafts.

By Friday night, there were no more tests to do, so we told the nurse and Dr. Tsai that we would be leaving. It took us 1½ hours to pack up. We went out to the desk to say goodbye, but Dr. Tsai and the nurse told us that he would have to call Dr. Dec to ask him to order the discharge. Dr. Dec had agreed that we could leave Friday night. I asked him why he had waited until now to call Dr. Dec. He had no response. They made me sign a paper signing out AMA (against medical advice).

We took a cab to the Putnois, where Carol was staying. They and the the Rothenbergs are such good friends.

I celebrated that night with salt-free spaghetti with white clam sauce from Guido's.

On Monday, Dr. Dec called, and he was pissed. "No one has ever signed out on me before. It raises questions as to your ability to undergo the stress of a heart transplant." I assured him that if he spoke with my doctors in Providence that they would assure him that I was a cooperative patient who had tolerated lots of stress from other procedures. He said, "That's what they say, but it better not happen again." Great! Now I've pissed off my transplant surgeon.

When I arrived back in dialyis, Dr. Cottiero assured me that they could add a day a week of two hours of ultrafiltration. I asked him about whether they did sodium gradient, and he responded, "I thought you were on it." But, in fact, I was not. On Monday, the nurse who runs the place told me she'd tell me on Wednesday when the extra day would be. On Wednesday, she didn't show up, but one of the junior nurses told me there would be no fourth day, and that Dr. Cottiero felt three days a week would be sufficient. Unfortunately, they've been taking me later and later, and they turn off the heat at 3 PM, and the thermostat is under lock and key. No, it's not about the money. God,  I need a nephrologist and am interviewing to others this week. I've put on 10 lbs. of fluid in one week.

This week, I received a call from Dr. Dec's assistant, who told me that the tissue typing showed no antigen sensitivity, which means that finding a suitable heart will not be as hard as we thought. This was very good news, and it means that Dr. Dec got over his anger. On the other hand, what had been a vague hope now becomes a real possibility.