Part II: My New Bouncing Baby Kidney
A gift of love gives writer a whole new life after her daughter donates her kidney.
On Friday morning, April 1, a light snow was falling when we drove down Broad Street to Einstein Medical Center for my kidney transplant.
Taking the drug lithium for bipolar disorder had ruined both my kidneys.
I was reunited with my daughter Sarah, who in several hours would cede her left kidney to me in the operating room. We hugged and were in great spirits. Her husband, Ethan, was with her, as was my boyfriend, Scott, and my son, Dan.
Dressed in a blue hospital gown that opened at the back, I slid into a gurney and removed my contact lenses. Everything was a big fat blur of colors and moving shapes. A regular abstract painting. And I was the painting’s subject. The Gross Clinic by Thomas Eakins.
Tubes were put into my left hand and right jugular vein. Medicine would drip into my veins. When they pushed me into the operating room, I looked around, asked my escort, who had pushed me in, Is this the OR?
It was a huge room like a walk-in refrigerator. That was the last thing I remember.
I don’t even remember Dr. Steve Minyan, the anesthesologist, pumping me with numbing medicine.
After the patient is unconscious, they insert a huge white tube down your throat, called an intubator. This enables medicine to go down and the lungs to breathe. Minyan had asked me to open up my mouth and stick out my tongue before surgery so he could see the size of my mouth.
They also scrub off your whole body to get rid of germs. I wore a blue cap on my head. We don’t want any of my dyed red hairs getting in the way.
My chief surgeons, Radi Zaki and Stalin Campos, were assisted by a host of surgical residents and fellows. All were in good spirits, friendly and optimistic. Very personable. Literally great bedside manners.
Since Einstein is a teaching hospital, we had a veritable international team of helpers including folks from Nigeria, Liberia, Pakistan, Columbia, Persia and India. Chief surgeon Zaki is from Egypt and Campos from El Salvador.
I was groggy when I came to after the operation. Sarah was in the next bed separated by a blue curtain. I stuck out my hand, and we held hands a moment. I had no desire to talk, nor did she. We were bushed.
"Everything went fantastic," said Campos.
He also had one of his residents photograph us for a book we’re planning to write.
I remember the first moment I felt happy.
Prior to that I was somber, serious, pensive. You’ve got all this medicine swirling through your veins, plus the new antirejection medication, and you are quite definitely not yourself, though your central being is comprehending and observing well.
Over breakfast, I poured a carton of lowfat milk over Rice Krispies and heard the snap, crackle and pop. What a glorious sound. The operation was a success.
Every precaution is taken after surgery. Many deaths occur after surgery, so I was impressed that they kept my legs wrapped in pulsating thick, white “stockings” to prevent blood clots.
The best medicine, though, was to get up and walk. Not easy.
I would take small steps down the long hallway. When I felt up to it, I would walk further, passing the nurse’s station and seeing the cadre of great helpers who do this life-saving work.
The new kidney, aptly named Odysseus for his long journey back home to mom, began working right away, producing glorious litres of urine, which are carefully measured and checked by the staff.
When I had end-stage renal disease, my urine was of very poor quality, and the toxins that are supposed to be filtered through the organ were swirling through my bloodstream.
This caused nasty symptoms at the start of my kidney failure, including itching, cramping, anemia and edema. I remember one night just lying in bed thinking, "This is truly awful. How can this be happening to me?"
Quickly, though, my nephrologist put me on a host of meds that removed all those symptoms.
Visitors and flowers made my stay easier. I’d be dozing off, and in would walk one of my four sisters or friends from my support group, or my son Dan with a load of supplies: fresh apples, a Vanity Fair magazine, National Geographic, and he’d show me the latest photos of his daughter Grace, 8 months old, who now crawls backwards.
"I’m so lucky to have all these people in my life," I thought. "Family and friends are what life is about."
I remember looking out the window in my eighth-floor room of the Tower Building, seeing the city lights winking in the night and thanking God for my remarkable recovery.
Every morning, a bevy of doctors would stop by my bed. One of them said, "You probably don't remember me because you were out, but I had the honor of carrying your daughter's kidney into your room to be transplanted."
I was so moved.
He said the kidney was first examined by the surgeons to make sure it was OK, and then wrapped in some sort of cold cloth to help preserve it outside the body, probably no more than 20 minutes.
I had a vision of Aztec human sacrifice.
Campos, who said Einstein performed 125 kidney transplants last year, came in to visit me on day three. He told me my test results were so good I would go home the next day. This was shocking because we’d prepared to be in the hospital for a whole week. I’d go home on day four, and Sarah was discharged on day three.
In a wonderful coincidence, Ethan's band, The Bad Plus, will play at Chris's Jazz Cafe in Philly April 16 and 17.
Campos and I chatted a bit, and he asked if I’d seen the incision. No, I said, so he borrowed a mirror from the nurse and I looked in wonder at the six-inch incision, covered with tape, a few inches below my belly button.
He was so rightfully proud of his work, this man who was from El Salvador and knew at age 8 he wanted to be a surgeon.
Why? I asked him. Because my mother was a nurse and did community service, he said. As a small child, he would often accompany her to the emergency room, where she worked alongside surgeons.
She also helped people during the bloody Civil War (1980-1992) in which 75,000 people were killed.
His family now lives in America, a tough decision for all of them because they so loved their country.
"We'd had enough of war," said Campos.
Before he left my bedside, he encouraged me to drink lots of water. We decided to walk together to the elevator, down the dauntingly long hallway.
Every step ached because of my stitches and also the return of my darn sciatic pain, But, for Campos, I would take the long walk.
"I'm tough," I said.
"I know you are," he said.
"Don't forget," I said,"I survived bipolar disorder."
I told him I would bring him a copy of a book I wrote, "Yes I Can: Conquering Bipolar Disorder and Depression," about the rigors of my illness, which began at age 38 and continued for 20 years, and then left as suddenly as it appeared.
The night before I was to leave the hospital, I had an absolutely sleepless night. I could hear the television from the next room—the sound of sirens, screeching brakes, the usual TV fare.
I continued reading my Wallander mystery novel, but felt bored and despondent. Truthfully, I was in agony because of the return of my sciatic pain. I should’ve requested a Percoset—which I did the next day—but was afraid of the side effects.
Then, I had an idea. I walked over to the windowsill where I had a container of food from my 88-year-old mother. I ate half a deviled egg and celery stuffed with cream cheese and olives.
Both cream cheese and olives were on my "forbidden foods list" I had adopted about a year earlier to help preserve kidney function.
I savored every morsel and went back to bed. Finally, around 5 a.m. I fell into blissful sleep.
I signed the discharge papers at 12:20 p.m. Tuesday, April 5. I could barely write. My voice was still hoarse from the intubator. Larry wheeled me to the lobby, where Scott pulled up and drove me home. The magnolias and forsythia were in bloom.
Recovery is slow and steady. The hardest thing is getting used to taking my new pills. At 8 a.m., I take a total of 14, and at 8 p.m I take another 14. I must learn to recognize my antirejection pills—Prograf is a small white capsule that melts almost immediately upon contact with liquid; Cellcept is a huge two-tone capsule, blue and pink; and Prednisone is a tiny, innocuous-looking pill.
See! They all have personalities.
How potent, how important they are! A good recovery depends on taking the pills properly. If your body starts rejecting the kidney, terrible things happen. Campos told me an awful story about a man who was transplanted with the kidney of an infant. For unknown reasons, he stopped his antirejection meds and ended up in the ER nearly brain-dead.
An Einstein social worker is helping me apply for help in paying for them.
But look at all the foods I can eat now!
Previously, I existed on a low potassium, low phosphorus, low protein and sodium diet. How delicious my first banana in a year tasted. And a simple slice of cheese I popped in my mouth.
And Mom’s delicious pea soup with carrot chunks.
My neighborhood looked so beautiful as we rounded the bend on Cowbell Lane in Willow Grove. There was neighbor Bill’s truck in the drive and Bob’s orange Challenger in the street.
My house looked beautiful when I walked in the door. The backyard daffodils had all blossomed, which I could see from my kitchen window. I love simply sitting on my couch in the living room and looking out the window at my quiet street with Nancy letting her little white dog out for a walk.
Speaking was difficult at the start, and I avoided answering the phone.
I did a blog post the night I got home, though I never pushed myself, but let things come naturally. I keep the phone off the hook so I can doze off when I wish and have my blessed music on the stereo. The only music in the hospital was the rhythm of the carts rolling down the hallway.
And now, if you don’t mind, it’s upstairs for a little nap. Nothing feels as good as sleeping in your own comfy bed.