Kidney Transplant Recipient Cycles 3,000 Miles For Organ/Blood Donation

The Inspiring Story of  Monique Janelle London

For unknown reasons, Janelle London’s kidneys quit working when she was 27 years old.  But instead of letting kidney failure drag her down, she grabbed it by the horns and turned it into an opportunity.  Looking back, she’s almost glad it happened.  “Kidney failure didn’t really slow me down. It has actually pushed me to achieve things I otherwise wouldn’t have dreamed of.” 

Janelle didn’t have such a positive outlook at the beginning.  She was living in Barcelona, Spain in 1992, taking time off between law school and law practice to attend the 1992 Summer Olympics, when her kidneys shut down. Otherwise healthy, she had no idea what was happening or why – only that she was feeling very tired and getting strange muscle cramps. She was diagnosed at a hospital in Barcelona with End Stage Renal Disease, or chronic kidney failure, and flew home to Austin, Texas immediately. At the time she was thinking, “This can’t be happening to me.  Does this mean my life is over?”  She was “in total shock and had no idea what the future would hold.”

Within 48 hours of arriving in Austin, Janelle began hemodialysis.  She received dialysis treatments 3 times a week, for 4 hours at a time, to replace the function of her failed kidneys by cleaning the toxins and extra fluid from her blood.  This involved going to a dialysis center and getting stuck in her arm with two large needles, so blood could flow out to the dialysis machine to be cleaned, then back into her body.   She also had to go on a strict diet to limit her intake of potassium, sodium, phosphorus and fluids – substances which can build up in the blood and become toxic if the kidneys aren’t working properly.  “The dialysis diet is so bizarre.  I could eat all the sugar and fat I wanted, since those substances are processed by the liver, not the kidneys.  Foods like marshmallows, jelly beans and butter are ON the dialysis diet.  But I had to cut back on foods like fruits, vegetables and dairy products, and even water – all the things you’ve always been taught are good for you.”

After stabilizing on dialysis, Janelle decided it was time to take back her life.  She returned to San Francisco and started her job at a large corporate law firm as originally planned.  She got a kidney transplant at U.C. San Francisco just 6 months later.  At that point, she tried to forget that she had ever had kidney disease.  However, her body rejected the transplanted kidney after 2 years.

Janelle went back on dialysis, but remained determined not to let kidney failure dominate her life.  She worked part time at her law job so she could do dialysis on Monday, Wednesday and Friday evenings, and tried to make the most of her non-dialysis evenings.  “It did hamper my social life, having to turn down social events planned on a Monday, Wednesday or Friday night.  It’s hard to explain to a date why you’re unavailable the same nights every week, without coming out with the whole story.  After a while, I would tell the guy that I had a medical problem, but I wanted him to get to know me as a person first – not as a patient.” 

Janelle also refused to let kidney failure slow her down physically.  She challenged herself to participate in the Alcatraz Sharkfest, a 1.5 mile swim from Alcatraz to San Francisco.  “Just having the challenge out there motivated me and kept me going.  Plus, swimming in an event like that made me feel more like a ‘normal’ person – it was a challenge just like a perfectly healthy person would undertake.”  She finished the swim successfully in 1997 – then did it again in 1998 “just to prove the first time wasn’t an accident.”

After 5 more years waiting for a kidney on the national waitlist, Janelle got a second kidney transplant in 1999.  This time, instead of trying to put kidney failure behind her, she adopted it as her new cause.  “I left my law firm, O’Melveny & Myers, after 7 years of practice to devote my full attention to promoting organ donation and helping other kidney patients.  I’ve been doing volunteer work for the last year and a half, serving on boards and committees of patient organizations, helping make organ allocation policy and raising awareness about the need for organ donation and transplantation and the issues facing dialysis patients.  I also co-wrote a medical ethics textbook to teach medical students about the legal and ethical issues surrounding dialysis and kidney transplants.  I’ll go back to work eventually, but for now this is absolutely the right thing to do.”

Currently, Janelle is working on funding and producing a video for new dialysis patients and their families.  The video presents life on dialysis from the perspective of a veteran patient, using humor to help new patients understand dialysis and see its challenges in a positive light. “After I got over the initial freak out and depression over this major life change, I started to see certain aspects of dialysis as almost funny.  Being at dialysis for all these hours every week, getting to know the staff and other patients on my shift and all their personality quirks and crazy ways of dealing with dialysis, with alarms and buzzers on the machines going off all the time, being on this backwards diet where I couldn’t eat high potassium foods like bananas and potatoes, always trying to sweat off extra fluids – the whole thing was almost like a series of MASH episodes.  Sometimes it got so ridiculous that I had to laugh.  I wanted to help other patients see the humor in dialysis.  The video will also show patients that dialysis isn’t the end of their lives, as long as they make the necessary lifestyle adjustments.” 

Janelle has also been taking advantage of new challenges and opportunities that opened up to her as a transplant recipient.  With her kidney transplant, she became eligible to compete in the U.S. Transplant Games, held every other year for recipients of transplanted kidneys, hearts, livers, lungs, pancreases and bone marrow.  She medaled in racewalking, high jump and swimming.  “That was one of the best experiences I’ve ever had.  It was like getting to be in the Olympics without being anywhere close to an Olympic-caliber athlete. Larry Hagman and Sean Elliot spoke at the opening ceremonies, since they are both transplant recipients. I got to meet some of the most wonderful people, and we all had this incredible bond of a shared transplant experience. But probably the most intense part was the ceremony to honor the 1,700 donor family members who attended.  These are people who lost a loved one and consented to donation of that person’s organs in the face of enormous grief, to save the lives of others. It was like a big thank-you from all of us transplant recipients to the donor families who made our lives possible.”  

Janelle’s biggest challenge and greatest opportunity is still ahead.  In July, she was invited to join the Five Points of Life Ride, a bike ride from Maine to Florida to raise awareness about the need for organ, blood and bone marrow donation.  The 10-member team will ride 3,000 miles down the Atlantic Coast in 7 weeks, from August 25 to October 15, stopping along the way to kick off local donor events, give press conferences, meet with community leaders and discuss donation.  Local riders are invited to join the team as they pass through the area. 

Janelle is the first kidney transplant recipient ever to participate in the ride, and one of 2 organ recipients cycling (the other, Frank Loskota, received a heart transplant).  “There’s no question this is the biggest physical challenge of my life.”  Janelle says.  “I’ve never even cycled 70 miles in one day, much less an average of 70 miles 6 days a week for 7 weeks.  But I feel compelled to do this to reach as many people as possible with the message about organ donation.”  The message?  “The message I want to convey is to discuss organ donation with your family.  Signing an organ donor card or putting a designation on your driver’s license isn’t enough to guarantee that your wishes to be an organ donor will be honored.  Organ donation doesn’t happen unless the family of the deceased gives their consent.  So you have to tell your family about your decision.”

Janelle also sees the ride as a way to show that “with a transplant, you can do anything.”

You can follow the ride’s progress at 2 web sites. The principal web site for the transplant community, www.transweb.org, will host my daily reports.  I will cover both the Tour de France and “Survivor” angles.  I will include Thrill of Victory and Agony of Defeat photos – many of them actually taken from the ride itself.  You will read about raw nerves, sore quads, flat tires, mass calorie consumption and battles with the elements.  You may even shed a tear over the heartwarming tale of a speaking engagement where the audience overlooked the sweat, stink and bad hair of the riders (well, me) to understand the desperate need for lifesaving organs, blood and bone marrow in this country.  The only thing you will NOT read about is how many times I wimp out and ride in the support vehicle (because I won't print that).

You can also get general team reports at www.lifesouth.org, under the “5 Points of Life Ride” menu.  

Information about organ donation and how you can be an organ donor can be found at www.organdonor.gov.

UPDATE...

© 2000 Monique Janelle London – Printed in www.YourFamilysHealth.com by permission.