Second Seder
Nancy, once again you outdid yourself! You put on a Seder for the whole extended family:

Nancy, Jon, Carol

Michal and Tanya.

  ..Tanya, Michal

Johnnie, Carol, and Nancy had a pre-Seder tasting in the kitchen. Sam made kiddush.


 Nancy ..Sam makes kiddush

Tanya and Stefi.
Tanys & Steffi

My mother and I were very much alike tonight, both leaving the table frequently to lie down. I could barely stand up because of the pain in my back. I wish I could remember the food both nights. I recall it was delicious, but the only thing I remember is matzo ball soup, of which I had a second helping.

Bess & Michael

Ilana, shown here with her aunt Tanya, has turned out to be a real charmer, full of chen. Josie still steals the show, however.

Ilana .Marjorie, Josie, Jonathan

Adam, with his sister Tanya, expounds on the position of the wise son. My mother spoke at length about the recollections of her youth.

Adam & Tanya  Nancy, Bess, Marjorie

Marjorie tries to crush "Baby Ilana."

Nancy  Josie & Ilana

Three brothers -in-law from diverse backgrounds get along so well.

Michal, Tanya, Ilana ..Brothers-in-law

Here's what it's all about.

Josie & Zayde

These were not the Sedorim that I was anticipating, a final repeat of days of yore. I was in such pain, so blurred, so out of it, I hardly knew what was going on.

On the train home, I could stand up myself, and I couldn't breathe. I was scheduled for admission to the Miriam two days hence for a right heart cath, as requested by Dr. Dec, so I called my cardiologist and he put me in one day early. A chest X-ray showed a hairline fracture of the lower rib. You needed a magnifying glass to see it. The right heart cath showed left ventricular failure for the first time, as well as the long-standing right failure. But my heart appeared to be functioning better than the data would predict. They figured out that it was the fistula (direct connection between an artery and a vein created in my arm for later use in dialysis that was using up the energy of the heart. I had a couple of days of good dialysis in the hospital. They decided that part of my problem was that they were taking off too much fluid, and that I needed more fluid aboard, even if it it resulted in edema, in order to better perfuse my brain (which was a little foggy) and my kidneys.

I returned to the cash cow of the outpatient dialysis center (I bought lots of stock in the company that runs the national chain of them--any company that cuts corners and screws me is one I want to own). My platelets, which were always low, were running dangerously low. Dr. Cottiero, my nephrologist, decided that I had a heparin-induced thrombocytopenia (low platelets). They put lots of heparin the machine to make sure it doesn't clot. He stopped the heparin. I began to clot the machine. "We've got to do something," he said, and told me to take a baby aspirin every day. I reminded him that I had an duodenal ulcer just a couple of months before. He said that a baby aspirin a day wouldn't hurt. It hurt.

But first, a terrible blessing came my way. After I was released from the Miriam, the phone rang on Saturday night. It was Shuly Schwartz, a colleague of Carol's from the Seminary. What a year she and her husband, Gershon, have had. A year ago, Gershon lost his prestigious pulpit in Philadelphia. Then, a few months later, their college-age son died suddenly under the most tragic of all circumstances. She said to me on the phone, "Hi, Michael, this is Shuly."

"Shuly," I said, "How nice to hear your voice."

"I wish it were under different circumstances." I thought she was referring to the fact that I was sick.

"I need your social security number," she said.

When I asked why, she said that Gershon had been having some headaches, and that day he had dropped to the floor, and was found at the hospital to have a massive brain tumor. He was brain dead, on life support, and a registered organ donor, and he was B+, already tissue typed. She wanted to call the New  England Organ Registry to hook up with me. I started to cry, both for her grief and loss, and for the goodness of people under times of extreme stress and loss.

However, when she called the Organ Bank, I was not on the list. Dr. Dec had told me weeks before that I was on the list. She called MGH and was told, "He's not ready."

Monday morning, Dec's assistant called me to say that Dr. Dec had put me on the list that day, and that I could have Gershon's organs. "It's too late," I told her, "He's Jewish, and he must be buried right away. I'm sure they've harvested his organs so that others could benefit." Indeed, I was right. I had missed this gift from God and from righteous people. I called Coral back, and told her that was indeed the case. She explained, you weren't officially on the list because you sent in the results for a sigmoidoscopy, and the protocol requires a colonoscopy, and one more blood sample.

I was angry and depressed. I've been depressed before thoughout this ordeal, but maintained correctly, that the treatment was not medication or therapy, but a transplant. Now, I started on Zoloft, tried to put my anger aside, considered the options of beginning again elsewhere in Boston or New York, and decided I was best off where I was.

I scheduled a colonoscopy. The prep the day before was just about the worst experience of my life. You can only have fluids or jello all day. I went to dialysis in the late afternoon, and they took off what they could. Carol was in New York, and it was a good thing, for she would not have been able to stand my moaning. Larry came over, since he has had several. He was terrific. I had a gallon jug filled to the brim, filled with vile cherry-flavored liquid. I can't drink that much plain water and not puke. I followed the directions and had 10 8 oz. glasses, each glass chugged in its entirety every 10-15 minutes. I became horribly nauseated, and suddenly, all hell broke loose. It poured out of me. It took about an hour to come out clear. But the nausea persisted. Larry kept reassuring me that this was normal. I took sleeping pills and got a few hours sleep.

Cilia dropped me at the Miriam at 6:15 AM. They took me to the procedure room, gave me Versed, so that I was unconscious, and the next thing I knew I was awake, feeling fine, and very hungry. Reva took me home, and I began to eat. Over the next day, I could feel my colon filling up from right to left.

That weekend, however, I woke up retching with the dry heaves that wouldn't quit. Carol took me to the ER, where the ER doc examined me. She did a rectal, and there was gross red blood. I knew from the colonoscopy report that I had internal hemorrhoids, but they had never given me a bit of trouble. They started an IV and gave me Phenergan, an anti-emetic sedative, added to the benzos I had taken to sleep. I remember the nausea instantly disappearing, saying, "Thank you so much," and then I apparently slept for 18 hours. When I awoke, I was in a gross delirium. I could not pronounce words properly, I didn't know who the President was (perhaps a blessing), and I didn't know what year it was. I had wierd hallucinations and delusions. I dreamed that I was falling out the window, feet down, and hit the pavement, six floors below. I felt the thud, and said, "I've done a bad thing." I snuck back insided the hospital, and climbed into bed. Then I heard doctors voices from the hall, saying, "This picture can only be caused by pontine lesions, usually a fall from a roof hitting feet down." They had found me out. The strangest thing was that while I was in the delirium, the TV must have been on, reporting on a woman who fell from the top floor of the Providence Place Mall.

They decided to catheterize me, for Phenergan is metabolized only by the kidney. Out came 400 cc of clear light urine, a massive amount for me. Instantly, my delirium cleared. I knew where I was and asked what had happened to me. I had some problem pronouncing words and naming things, but this disappeared over the next few hours. Next thing I knew, the nurse had be walking down the hall. They took out my catheter the next day. I went to dialyis. No-one had seen my stool yet, because the gross blood from the hemorrhoids, although much less, contaminated the stool. Finally, we could see that the stool was very dark itself, and I had upper GI tenderness releaved by Maalox. They took me right from dialysis to endoscopy, for another look at my stomach and duodenum under Versed. Surprisingly, everything looked fine, so presumably, I bled from the recent colonoscopy. The stool got lighter and lighter, and I went home.

I went in to see Dr. Dec, who explained that he had stuck his neck out by agreeing to give me Gershon's organs on Monday, by-passing protocol. He is a cardiologist (not a surgeon--to him, a surgeon is a technician. I may never meet my surgeon) who is the Czar of transplantation for MGH, and really for New England. For him to break protocol was a risky move. Coral put her hand on my shoulder and said, "You've done your time here." And Dec smiled and said, "Don't worry, we'll take care of you. You're second on the list, and the first one is a small woman, so if it's a person your size and B+, you are next. I'm counting on you to be reliable. You know you have to have 17 biopsies over the next year."

"Biopsies of what?" I asked.

"Your heart," he explained. You'll be on immunosuppressive drugs for the rest of your life.

My heart sank at the thought of them opening my chest 17 times. "No, he said, we do it with a catheter through a vein." I assured him once more of my compliance.

The following week I went in to see Dr. Goes, the nephrologist who had taken care of me during my week at MGH. He exclaimed, "You look marvelous. You know, you may not need a heart at all, just a kidney." When all you have is a hammer everything looks like a nail. I reminded him of the particulars of my case, and the light re-dawned for him. He called Coral who said that I was first on the B+ list for my height and weight (now average) and could go tonight, or in a couple of months. He set up appointments for me to meet the renal transplant surgeon, and told me to get the catheter out of my chest right away, and to use only the fistula. I told him this was fine with me, but he would have to tell Dec, so that I don't come across as a cowboy, and he confirmed that Dr. Dec ruled. I told him that if my number came up before my appointment with the renal surgeon, I would have to bypass him. Dr. Goes agreed that Dr. Dec told everyone else at the hospital what to do. The following week the catheter came out of my chest. It went directly into my heart. Amazing! Two days later, I had my first shower in five months. Getting needles in the fistula is worth it. What a joy!

And so I wait.
Back to first seder