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What’s a Daughter to Do? This One Gave Gift of Life
« on: April 25, 2011, 06:05:55 AM »
What’s a Daughter to Do? This One Gave Gift of Life
This writer never thought much about organ donation beyond that box you can check off on your driver’s license — until her mother needed a kidney.
By Ellen Piligian | Email the author | April 24, 2011

My left kidney has resided in my mother’s lower right abdomen since May 19, 2003. I gave her this gift as happily as one can after agreeing to let a surgeon remove a vital organ for no other reason than to give life to someone else. 

I would do it again.

Happily, lovingly, in a heartbeat. 

The transplant came more than two years after my mother, then in her 60s and tending to her horses, llamas and other pets at the Oakland Township home where I grew up, went into sudden and unexpected kidney failure after a bout of uncontrolled high blood pressure.

I remember looking with childlike horror into a sterile hospital room as my mother was dialyzed for the first time within days of her diagnosis. 

She looked like a mummy swathed in layers of thin white blankets, her eyes tightly shut as if in pain. Maybe she was. Maybe she was also trying to escape the reality. 

And that was this: Her kidneys had shut down. She would die without dialysis, which tethered her to a machine to clean her blood of toxins and excess fluid, three days a week, four hours each time. 

This was how she’d survive for as long as she lived unless she got a transplant. She was depressed, nearly always nauseated and ended up in the hospital so often that my father and I stopped keeping track. Once, after spending all night in the emergency room because too much fluid had built up in her lungs, she found herself struggling in an oxygen mask as her doctor urgently wheeled her to the intensive care unit himself.

I felt helpless beside her as an eerie gurgling, crackling sound emanated from her chest. She could have died. 

Suviving the wait

People say they exist more than they live on dialysis. I saw this in my mother, a once-energetic artist and animal and environmental activist, now withering away, emotionally and physically. 

A transplant was her only option to regain life as she knew it. But Michigan, we learned, has one of the longest organ wait lists in the country: five years, on average, before a compatible kidney becomes available because not enough people are registered as donors. 

As of April 1 in Michigan, 2,409 people were waiting for a kidney, the largest number by far of any group waiting for an organ, including liver (327) and lung (62). According to the National Kidney Foundation, nearly half of the 13,156 single-kidney transplants performed nationally in 2008 were from living donors.

I wondered whether my mother could survive a five-year wait. Many patients don’t. Her outlook was even grimmer. At her age, even if there was a match, she might well be passed over for a younger candidate. 

I knew what I had to do. 

I had already learned more than I ever imagined about the kidney from my father, a retired pathologist. It's an amazingly sophisticated organ. Besides removing toxins and maintaining proper fluid balance in the body, it regulates blood pressure and is essential in our red blood cell production.

I also learned that while we have two kidneys, we can live perfectly well with one. The other is essentially a spare. With one kidney, I would be at no greater risk of getting any kidney disease, and if I did, I’d fare about as well as if I had two. 

I was actually excited. But it was still a lot of pressure for me — certainly not from my mother, who if anything felt guilty and conflicted about accepting a daughter’s kidney. No, I felt pressure from the situation. What if I didn’t match? What if her body rejected my kidney? What then? 

Although a few family members and a couple of my mother’s friends offered to be tested, none of them worked out. I was her only option. 

I even scoured the Internet for altruist donors. Amazingly, I found a Seattle woman who said she’d be my backup. But who really knew? What I wondered was where were all the kidneys from people who no longer needed them — healthy people who either didn’t sign their donor card or at least share their wishes with their family. 

But people don’t like to talk about those things — of dying too young, of what you want to do with your organs. I know, I was one of them. Now it seemed so unfair. I was told once by a doctor in the transplant field that if every viable candidate agreed to be an organ donor, there would be no wait. There would be no need for living donors.

The irony of having a spare kidney

We were lucky. I was able to give my mother new life that day in May at the University of Michigan hospital in Ann Arbor — a life more as she knew it, taking care of her animals and and exhibiting her art.

My kidney, as I sometimes refer to it, has had some ups and downs, but it’s still going strong. As for me, because I’m often asked, I’m perfectly fine with one kidney. Many people are born with only one and don’t even know it.

But it’s nice to have a spare.

I wish I had one now. 

You see, ironically, my father has kidney disease, too, inherited from his mother. We always thought he lucked out and had avoided this disease, which he'd had a 50 percent chance of inheriting. His symptoms came late.

He only learned his fate a few years before he shared it with me, just days after my mother was first diagnosed. Of course, that could have changed my fate, too, but I was in the lucky 50 percent. 

So again, I find myself with a parent on dialysis, for more than three years now, saddened by a shortage of organs that has limited my father’s options. At least I can help him, gladly, with his therapy, which he’s able to do at home. It hasn’t been as rough on him as it was with my mother.

But still … . If I could, I’d give him a kidney. Happily, lovingly, in a heartbeat.   

April is National Organ Donation Month, a great time to consider adding your name to the Michigan Organ Donor Registry. If anything happens to you, your wishes will be carried out. Sign up online at services.sos.state.mi.us/OrganDonor/Registry.aspx. If you choose not to sign up now or ever, you should still discuss your thoughts and wishes about organ donation with your loved ones. Parents should discuss how they feel about their children as organ donors. Too often, families are caught off guard by a tragedy and have no idea what to do. 

According to Gift of Life Michigan, each nonliving organ donor can save up to eight lives. A donor with two kidneys can save two people with kidney failure. Find out more about organ donation at Gift of Life Michigan at giftoflifemichigan.org. 

As an occasional volunteer with Gift of Life, I’ve helped raise awareness about organ donation by sharing my experience with area high school students. Usually, they want to know the details of my minimally invasive laparoscopic surgery; I only had a student faint once.

Are you an organ donor? Tell us in the comments.

Daughter Jenna is 31 years old and was on dialysis.
7/17 She received a kidney from a living donor.
Please email us: kidney4jenna@gmail.com
Facebook for Jenna: https://www.facebook.com/WantedKidneyDonor
~ We are forever grateful to her 1st donor Patrice, who gave her 7 years of health and freedom


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