Love=Macrobiotics + Liver Transplant
The Phone Call
March 10, 1994, 2:00 p.m.
Hello, is Lois Stone there?
She’s sleeping. And I won’t disturb her.
I’m calling from the doctor’s office. We have accepted a liver for your mother.
Excuse me, what does that mean?
How soon can you get to the hospital?
Thirty seconds later.
Mom, wake up!
What’s the matter?
Nothing bad. The doctors have a liver for you. We must go to the hospital right now.
(Sobs) Why are crying? Are you afraid you won’t survive the transplant?
No, I’m happy!
As quickly as we could, we began our thirty-minute drive to the hospital. Throughout the drive, my mother clutched a mezuzah (the Ten Commandments on a tiny scroll) in her right hand, a blarney (prayer) stone for good luck in her left hand and she read from a prayer book that she held with the fingers of both her hands.
The doctors had told my mother that there was a chance she wouldn’t survive her transplant. My mother also knew she could be unconscious for days while her body adjusted to her new liver.
Once inside her hospital room, the nurses began an intravenous treatment. Though my mother never drank alcohol, ten years ago she was diagnosed with cirrhosis of the liver. Three years ago, the doctors discovered she had hepatitis C. The ultimate bad news came six months ago. My mom was put on the transplant waiting list because of liver cancer.
At 1:00 a.m. orderlies transferred my mother to surgery. As my father, two sisters, and brother-in-law tried to sleep, for hours I prayed and paced the floors. I prayed for the person who donated the liver, and I prayed for the liver donor’s family. As hope touched our family, grief made an untimely and unexpected visit to someone else’s family.
Thirteen hours later our family went to see my mother in the surgical intensive care unit. As we walked into her room, a river of tears floated down the side of my mother’s face. First my older sister started to cry. Then my two younger sisters shed tears of joy. And for the first time, I saw my father cry. My mother tried to speak though she had a tube down her throat. I read her lips. “I love you,” she repeatedly said to all of us.
Before the transplant
Before my mother was allowed to have a transplant, she had to take a series of tests that all transplant patients must go through. To get on the transplant waiting list, a patient must be sick enough to die but well enough to survive the transplant operation. While my mother lay in the hospital bed, I asked her if she wanted me to cook her macrobiotic meals. Without a moment’s hesitation, she said, “Yes!”
I had cooked macrobiotic meals for my mother once before. About four years earlier my mother had phoned me for my help. “Jay, I haven’t held down food for over a week. The doctors don’t know what to do. Would you make me something to eat?” “Mom, I’ll be over in twenty minutes.”
A week later my mother had regained her digestive ability. I bought her a pressure cooker and $100.00 worth of groceries at the health food store. She never ate the food or used the pressure cooker I bought her. Though I wanted her to, my mother wasn’t ready for any drastic diet or lifestyle changes.
I started macrobiotics in 1985, nine years before I began cooking for my mother. The two courses I took at Vega and the five macrobiotic conferences I went to had taught me how to cook for someone with cancer. Of course, I owe Cornelia and Herman a great deal of thanks. Without Herman’s acid and alkaline theory and Cornelia’s samurai cooking style, I would be lost.
The five months before the transplant went well with one exception. A doctor had told my mother to drink two ounces of alcohol per day. The alcohol combined with some other drug was supposed to prevent the cancer from returning after the transplant. On the one hand, my mother was eating macrobiotic food every day. On the other hand, she was drinking two ounces of alcohol per day, which was destroying a liver already weakened by cancer, hepatitis C and cirrhosis.
Finally after six weeks I called the doctor’s office to complain. “Before you had my mother drink alcohol, she was driving her car and going out everyday. Now she just lays around on the couch.” The prescription for alcohol stopped with my phone call. (A nurse later told me my mother was the last liver transplant recipient to be prescribed alcohol before an operation.) I hate to think what would have happened if my mother had not eaten macrobioitic meals at the same time she was drinking alcohol.
After the Transplant
At the entrance of the hospital’s transplant unit is a plaque: “Where Miracles Happen.” Those of us who have practiced macrobiotics diligently and long enough have learned to expect miracles. I was not surprised–though I was delighted–by my mother’s strong recovery.
My mother went home ten days after her liver transplant. Our first concern was rejection, the body not accepting her new organ. We were also concerned about infection; a 12″ long, 11/2″ deep surgical incision had to heal. Twice a day for six weeks, I changed my mother’s bandages and cleaned her wounds with a sodium chloride solution. During this time, my mother ate mostly macrobiotic foods.
The birthday card my mother gave me made the 26 months I took care of her worth it.
What can I say–you’ve taken care of me for 7 1/2 months and I know these last four weeks have been more difficult and time consuming. You’ve saved my life and you’re making life easier for me and showing me a new way of life. Thanks to you, I’m feeling good, and I see how I’m getting my strength back each day.
You have shown what a good and wonderful son you are and loving too. Your cooking is superb.
I love you very much and I’m eternally grateful for all you’ve done. You’ve given me a second chance at life.
There were regular blood tests and visits to the transplant clinic. The blood tests were comprehensive and revealing. The blood tests showed liver and kidney functions among many other things. The blood tests also measured the amount of the anti-rejection drug in the blood. The anti-rejection drug is toxic and especially harmful to the kidneys. Too much of the drug could create severe side effects. Too little of the drug and rejection could be a problem.
I had a good idea how the blood tests would turn out before the results came back. When my mother ate well, I knew she would get good blood test results. When my mother began to widen her diet, I saw trouble ahead.
Once a month the doctors measured my mom’s alpha-feto protein count (AFP), the marker for her type of cancer. For five months my mother had a normal AFP count, below 10. (Before the transplant her AFP count was over 32,000.) I canceled my airline reservations and vacation when my mother’s AFP went above normal. My mom began eating healthier again and her AFP count returned to normal. A transplant coordinator with ten years experience told me my mother was the first cancer patient to have a normal AFP count after a transplant.
My mother often praised me and macrobiotics. Encore magazine, a transplantation journal, featured my mother in its Summer 1994 issue. “A lot of the credit goes to her doctors and nurses, she says, but also to Jay’s cooking–mostly macrobiotic foods with a heavy dose of whole grains, vegetables, and fish.” I doubt if any of Encore’s readers had ever heard of macrobiotics before. I know her doctors and nurses had not.
The Downward Spiral
One person can mean the difference between recovery and death. In my mom’s case, that person was her nurse, Joanne. Even if she worked all night, Joanne had a constant smile on her face and love in her voice. Joanne always examined my mother at the transplant clinic, and she was the one we called with our problems. Joanne withstood my intense barrage of questions and still laughed about it. Unfortunately for us, her other patients and the staff at the transplant clinic, Joanne moved out of state when her husband took a new job.
In September 1994, my mother’s health deteriorated as soon as Joanne told her she was leaving. Besides eating too wide, she was also not getting enough rest. The excessive and wide diet and the lack of adequate rest continued for four months.
In January 1995 my mother asked the entire family to come to her hospital room. We knew she had had a biopsy. “They found a spot of cancer on my lungs,” my mother said. “I don’t know how long I have to live.” “Let’s try again, Mom. Macrobiotics worked once before. It can work again.”
For the next three weeks my mom’s diet improved and the blood tests showed it. With just changes in diet, her AFP count reduced “significantly,” a one-third drop. But the improvements in the blood tests were not enough motivation for her to follow a macrobiotic diet. Soon my mother began to eat widely again and push herself too much. Her blood test and all outward signs indicated the cancer was spreading again.
In August 1995, my mother was eating mostly flour products, such as bread and pretzels, snacking on a steady stream of chocolates, and dining out daily. A home nurse came to the house five times a week to help her bathe. She still drank bancha tea as her main beverage. Sometimes she ate oatmeal, veggie burgers and udon noodles that I cooked for her. Miso soup, brown rice, and nishme vegetables were definitely out.
Mom played hooky from her November 22 doctor’s appointment. She had a good excuse. “I didn’t want to break up our regular mahjong game.” The next day she entered the hospital for the last time.
Mom died December 5, the day before a full moon. When I looked at the moon that night, I saw my mother’s warm, loving spirit as the light of the moon. The very small dark portion of the moon was the lack of attention she paid to her diet. Though my mother found the food hard to eat, she had a macrobiotic spirit. She never gave up. And neither did I.
My good and honest macrobiotic friends Elizabeth and Ron told me they don’t believe in organ transplants. Well, neither do I. My mother chose the path of the transplant. I helped her for one basic reason. I loved her. Some macrobiotics is better the no macrobiotics at all. “Your wife was one of our most successful transplants,” a doctor said to my father. “It may very well be that macrobiotics made the difference.”
The hardest part for me was taking my mother to her medical appointments, over 100 by my estimate. I watched my mother take up to 20 pills a day. The worse she felt, the more pills she took. I thought it was simpler and healthier to eat well instead.
The pluses of helping someone I love far outweighed the minuses of the numerous doctor’s appointments and drugs. Don’t miss an opportunity to help someone you care about. The person may not be willing to change their diet and lifestyle to the extent you want, but still your efforts will be appreciated. An added benefit: No matter how great you love someone before, the degree of love is always greater after you care for that person. No doubt helping someone with a serious illness is physically and emotionally challenging. It’s worth every drop of sweat and every tear.