This time, it's not my kidney

This time, it's not my kidney

by Michelle Minkoff
March 04, 2009

All I see is white and blue – the white of the operating room walls, and the blue of the sterile material covering the patient, exposing only the abdomen. I hear the snip of surgical shears, the doctors calling for instruments.

The doctors deftly manipulate the organs of the patient on the table. Observing a kidney transplant surgery wouldn’t have been unlike many other new experiences I have every day as a 22-year-old graduate student specializing in health reporting at Northwestern University's Medill School of Journalism.

Except for one small difference – on June 22, 2006, I was the person on the table.

After a four-year illness, I received my aunt’s kidney in a transplant operation in this very building, the University of Illinois at Chicago hospital.

As I watched attending surgeon and chief of surgery Dr. Enrico Benedetti, surgery residents Dr. Marin Marinov and Dr. Grace Chang, and medical fellow Dr. Ivo Tzvetanov operate on the patient, my mind swirled with emotions.

While this was a routine experience for transplant team members, the last time I’d been at a transplant surgery, it completely changed my life.

This experience had been a long time coming. When I was about to go into surgery, I asked to see my new kidney. The anesthesiologist said, "Sure, just count back from ten first.” I never made it awake past eight, let alone long enough to see anything. But I always thought it would be really cool – I’m a medical geek at heart.

So when my professor asked each of us to find a shadowing placement in a scientific or medical facility, I immediately thought of returning to UIC. I spent four days observing members of the transplant unit, often shadowing Dr. Jose Oberholzer, the current chief of the division of transplant at UIC.

The professionals at UIC give the job their all, always with a good sense of humor and intense passion. In the hospital, no hour is too early or late to spend with a patient, and hours passed in the blink of an eye.

The most amazing part of the surgery was seeing the kidney removed from one patient, transported on ice to another room and inserted into another body, where each vein and artery was carefully connected to its already functioning counterpart.

The kidney, about the size of a human fist, takes mere seconds to transform from a white, lifeless mass to an organ red and swelling with blood. This deceptively simple action can completely change a patient’s quality of life.

It changed my own life so much so that months now pass when I don’t think about the fact that I was once on this table. Everything seems as it always was – but I remember when it wasn’t.

I was 16, a sophomore at Palatine High School. Sleep was something I viewed as optional, and I never imagined myself with an illness more serious than a cold. But I was diagnosed with IgA nephropathy, an autoimmune disease in which the body attacks its own kidneys.

Fast-forward four years: I was a college student at Brandeis University, just outside Boston, and I was in kidney failure.

Suddenly, a doctor was talking to me about dialysis and transplants, and I felt my quality of life slipping away. Dialysis would involve being hooked up to a machine several times a week to filter out impurities in my blood that my failing kidneys could no longer handle.

The scariest part about kidney disease is, as Oberholzer and countless doctors have told me, “If something seems wrong, it’s often too late.”

My “normal life” literally stopped when I got out of bed to prepare to go to a college final exam, only to fall to the floor. I was too weak. From that time on, I was sleeping 16 to18 hours a day, a dramatic shift for this overachiever.

My mother, Ruth Minkoff, 61, said watching this transformation was extremely painful.

“I wished that I could take from her all that was happening and give it to me,” Mom said.

My father Mike Minkoff, 64, added, “If someone needs a transplant and is fortunate enough to have a donor or gets a cadaver donation, the experience is a life-changing event which affects the entire family.”

After I learned I needed a transplant, one option was to get on a list and wait for a cadaveric donation, that is, a donation from a deceased person. For my blood type, that would take about seven to nine years.

Or I could find a living related donor.

Our family decided you can’t just ask someone for an organ. Neither parent was eligible. But we wanted to keep our relatives and friends updated on my health, so my mom started making some calls.

She spoke to her sister Karen Kwan, who wanted to know if it were possible for a living relative to donate and what would happen to me if my condition worsened.

Mom responded yes, and that I would be put on dialysis. Karen said she didn’t want me to have to go through that and said she wanted to be tested to donate.

Interesting story about the kidney: It was inside New York’s World Trade Center on Sept. 11, 2001. Karen worked on the 101st floor of the South Tower and she was there that day, escaping minutes before the tower crumbled. I’m not usually one to say things like this, but I believe one of the reasons she survived was so I could get a second chance.

As for my life now, I always listen closely to my iPhone alarms. That beep might signal that it’s time for an interview, a new email has arrived or that it’s time to pop some of the eight pills a day I take to ensure the health of my kidney.

The pills are called immunosuppressants and their purpose is to keep my body from seeing my aunt’s kidney as a foreign object that it should attack. Eventually, my doctors say, the pills – which are essential – can damage the transplanted kidney.

So in the back of my head, a cloud looms. Any day could be the day I need to go on dialysis, and gone would be the days of having the energy to report, write and live my life.

But I’m thankful for that as well, a constant reminder of the importance of each day, and how my life almost slipped away.
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Related Links

The perspective of a donor, my aunt Karen Kwan

I asked my Aunt Karen Kwan to write a few words about her experience of donating a kidney to me.

“About 3 years ago, my sister Ruth told me that her daughter Michelle's kidney condition had worsened and that she would need either dialysis or a kidney transplant. As you can imagine, I was devastated. Michelle was so young and had a whole lifetime to look forward to.

The thought of years, months or even days on dialysis was difficult to accept so I asked my sister if I could be a donor. After a few months of testing, it was determined that I was a perfect match.

So what did I think and feel during this waiting time? I was scared - but not of the operation. I was scared that I wouldn't be a match. Also, with three children of my own, I was naturally concerned what would happen if something went wrong with the transplant.

But the risk seemed small enough and the reward so great. The transplant went smoothly, with maybe a month or two of discomfort. A small price to pay for the gift of life.

Almost three years later, I can watch my Michelle take on life with an energy that is overwhelming. I am thankful to all the doctors, scientists and researchers who have developed and perform the transplant procedures so skillfully. And I feel blessed that I was able to help someone I love so dearly. "

How Can I Find Out If I Have Kidney Disease?

Since November 2005, The National Kidney Foundation of Illinois’ KidneyMobile circulates the state offering free preventative education and screenings for high blood pressure, diabetes and chronic kidney disease. All of these conditions are related.

According to the National Kidney Foundation of Illinois, more than 13,000 community members have already been screened, and more than 75 percent of those screened had at least one abnormal result.

All it takes is a simple blood and urine test, which you can get from your doctor, or a service such as this, and you can learn what you are up against, and take action.

Link to KidneyMobile 2009 Schedule

Did you sign up as an organ donor on your driver’s license before Jan. 1, 2006?

If you did, did you know family consent is still required for donation?

To obtain a form to bypass consent, register online. The law has since been changed to ensure your wishes will be honored.

Online Registration to bypass consent https://www.donatelifeillinois.org/donatelife/registration.asp