Today, my new T-shirt arrived in the mail.
“Ask me why I have three kidneys,” it reads.
I ordered it online and plan to wear it when I return home from my Einstein Hospital stay after I receive a new kidney later this week from my daughter Sarah.
They leave the old kidneys in.
I lost vital kidney function after taking the medication lithium for nearly 17 years for manic depression, also known as bipolar disorder. It kept my moods stable and allowed me to live a vibrant, productive life.
When I first went on lithium at age 38, I was aware of this major risk. But every drug carries risks, even aspirin.
I did well on the drug—raising my two children as a single parent, working as a writer and copy editor for the Doylestown-based Intelligencer, then as a psychotherapist, all the while running my nonprofit New Directions, a support group for people with depression, bipolar disorder and their loved ones.
I was too busy to worry about lithium’s long-term side effects.
When my nephrologist (kidney doctor), Victor Ghantous, M.D., first told me about two years ago that my kidney function was only about 16 percent of normal and I would eventually need to go on life-saving dialysis, I didn’t believe him.
The mind is simply incapable of grasping such dire news about one’s body.
After a week, my denial slipped away, and I accepted the inevitable.
Interestingly, when I went off the lithium due to lithium toxicity in 2001, I found to my shock that I no longer had mood swings.
Not a single lousy depression or its opposite, the ridiculously happy energetic manias that catapulted me out of reality and into psychosis.
How fortunate to be rid of the fear of mood swings ever happening again.
However, my kidney function continued to worsen.
These fist-sized organs—located in your lower back on either side of your spine—are not only responsible for getting rid of the body’s liquid waste products, they also play a major role in food absorption.
No matter what I ate—fish and chicken, the occasional lamb chop, fresh fruits and vegetables, whole grains—my body simply could not absorb nutrients properly.
So my doctor put me on a host of drugs to help my body absorb food.
Soon, I was taking three times the amount of pills I’d taken when I had manic depression.
The doctor and I watched the slow progression of my kidney disease. I had gotten used to the awful name “chronic renal disease,” and then accepted that I was in the last phase of it.
The name alone was terrifying: “end-stage renal disease.”
He wanted me to prepare for dialysis. I pretended to comply.
“Just give me another month before I see the surgeon,” I pleaded with him.
I knew I would rather die than go on dialysis, a time-consuming procedure where you’re hooked up to an “artificial kidney” the size of a small refrigerator for about four hours per session.
You have your choice of going to a dialysis center three days a week or doing it at home six times a week. The more you do it, the healthier you remain, say the researchers.
For the life of me, I tried to imagine myself hooked up to the machine. Would I be able to fall asleep at night while the machine whirred next to me as it cleaned my blood of all the built-up toxins that the faltering kidneys couldn’t dispose of?
An equally horrible thought was the pre-dialysis surgery I must undergo to prepare my body for treatment. A disfiguring passageway called a “fistula” that looks like a lumpy frog is surgically created in the patient’s arm, and a catheter is permanently inserted in the abdomen for hook-up to the machine.
I’m not terribly vain, but how could I do this to the sacred body I’ve had for 65 years?
Don’t get me wrong. I have utmost respect for the 355,000 people a year who go through the rigors of dialysis.
It was simply not for me. For the first time in my life, I was forced to contemplate my own demise.
I’d had a good life.
My two children, Sarah and Dan, were both in their 30s and happily married. Dan and his wife, Nicole, have a darling baby daughter, Grace.
Not a single person supported me in my decision to avoid dialysis. But I was not going to stay alive for anyone other than myself.
Life became even more surreal when Dr. Ghantous suggested I get evaluated for a kidney transplant. Was all this really happening to me?
Off I went to Einstein Hospital on Broad Street in Philadelphia, half an hour from my Willow Grove home. In October 2010, after a dozen or more tests—including kidney and heart ultrasounds, and a stress test—I was placed on the National Kidney Register, along with 53,000 others.
But kidneys are at a premium. There are simply not enough donors for everyone on the list. Once every three hours, someone dies who is waiting.
There is no guarantee I would live long enough to receive a new kidney.
The average American is not an organ donor. Not even my boyfriend is. Nor can he be persuaded to become one.
My type of kidney disease progresses slower than people whose kidneys fail from diabetes, hypertension or congenital kidney disease, the most common reasons for transplants, said Ghantous.
Unlike these people, I remain active and energetic. The only way to tell I'm in end-stage renal disease is to look at my blood work, my slowly-rising creatinine levels, and something called the GFR—or glomerular filtration rate, which indicates the percentage at which your kidneys work.
Not to worry if it only works at 40 percent capacity. But my capacity varies from 12 to 16 percent. My body is at risk for conditions such as stroke and heart disease.
While going about my busy life—running my support group, doing psychotherapy, writing and poetry, and visiting my 88-year-old mother in her own home in Huntingdon Valley—I received a phone call from my 37-year-old daughter, who lives in Brooklyn.
Sarah decided to give me one of her kidneys.
It had never occurred to me to ask my children for this tremendous sacrifice. Over my sincere protests, she insisted on doing it. Her husband, Ethan Iverson, a jazz musician who is frequently on tour, enthusiastically endorsed the idea.
Both of us met with the chief surgeon and head of transplant, Dr. Radi Zaki (pronouced "raddy zakky"), of Einstein. He would remove her left kidney, he said, as it's easier to do because it has only one "pedicle," or connecting tube.
Sarah, who's a novelist, named her kidney "Odysseus" because it would be going on a journey back home, like the epic adventurer of the same name who, after the Trojan War, traveled an arduous 20 years before arriving back home in Ithaca to his wife Penelope.
Our family has subsequently embraced the transplant as an epic adventure.
Fortunately, the prognosis is excellent for Sarah to live a long and full life with only one kidney. A couple of restrictions, though, are strongly advised. No boxing, wrestling or skydiving. And riding in a rodeo is a definite no-no.
Coincidentally, Sarah had indeed hung up her boxing gloves a decade ago after winning the Golden Gloves championship. I only hoped she wouldn’t join the rodeo. She was, after all, born in Texas.
Like other people with kidney disease, I had no symptoms when I was first diagnosed. Routine blood work detected my creatinine level was dangerously high. Some 26 million Americans, or 13 percent of the population, suffer from this “silent” disease, according to the National Kidney Foundation.
Two months after I went on the transplant list, the phone rang. I was third in line to receive a kidney donation from a 29-year-old male who was just declared brain dead after a drug overdose. If I got his kidney, Sarah would be spared.
But I was not chosen. To help my disappointment and sense of the surreal, I wrote a poem about the young man called "Nameless Boy."
Last month, the phone rang again. This time, I was offered the kidney of a 24-year-old male who again had died of a drug overdose.
This time, I said no thanks. And did feel a twinge of guilt. But the date had already been set for my kidney transplant, and I chose to have a living donor, rather than a cadaver. Prospects for a longer life are much greater with a living donor than with a deceased one.
On Friday, April 1, my daughter and I will check into Einstein Hospital.
All elective transplants are scheduled for Fridays in adjoining rooms. Zaki, the chief surgeon, told me he would return from vacation the day prior. Vacations are the only time he gets to see his kids, ages 6 and 4, who call him "Dr. Zaki."
They’re going to the San Diego Zoo.
Am I scared? Absolutely not. I did loads of research and know what to expect when "Odysseus" is inserted into my lower right abdomen.
What's to be afraid of? I won’t be performing the operation. I’ll be dead to the world—er, I’ll be asleep—during the four-hour surgery.
Dr. Zaki, born in Egypt, and raised in New Jersey, the son of two veteranarians, answered all my questions when I met with him two weeks ago at my request for much-needed information and reassurance.
My favorite comment was:
“Ruthie, ‘You wash your dishes at night; I take out a colon.’”
Kidney transplants are as routine as brushing your teeth or picking the first daffodil in spring. They’ve come a long way since the first organ transplant—a kidney back in 1954—between identical twins.
This week, Sarah will take the train in from New York. Together, we’ll throw a party: Celebrate Spring, Celebrate Kidney Transfer Day.
My mom is baking the cake.