Life Changing Kidney Donation for Donor and Recipient

r-LI_Chris(Huntington Station, NY) – Receiving a kidney transplant gives those with kidney failure a second chance at life, but you rarely hear how those that donate their kidneys also have their lives forever changed.

Chris M., 38, from Huntington Station, NY, knew his life would go on a different path the moment he heard that his best friend’s kidneys were starting to fail.

“The day he told me he was going to start dialysis, I picked up the phone and called the hospital to see if I could be a donor,” Chris said.

Chris, who has worked as a Hip Hop DJ and On-Air Personality for Sirus XM and groups such as Naughty by Nature, was suddenly thrust into a new world of tests, physicals, nurses and medical jargon. Eventually, it was determined that Chris was a perfect match for his friend. Nine months after his first call to the hospital, Chris donated his kidney.

“I was the only person to get tested and I was a match,” Chris said. “The thing I remember most happened just before the surgery; I met a man who had been waiting four years for a kidney. He had tested with six family members and 20 other people and no one was ever a match. That made me realize how lucky we were. “

The ability to give his friend a new life profoundly changed Chris’ own outlook. He started volunteering with the National Kidney Foundation to talk with potential donors and recipients about living donation. He also started school again hoping to become a nurse.

“It has made me see things differently. I feel like I can do more,” Chris said. “I feel I have a type of compassion that I can share in a meaningful way with people.”

As part of his outreach efforts, Chris shares his story with hundreds who attend the Long Island Kidney Walk.

“I enjoy walks because it’s important to let people know about living donation,” Chris said. “It’s a beautiful thing, you just have to find the courage to do it.”

 

School Unites Around Transplant Teacher

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It wasn’t Physical Education that had children at Barrow Elementary walking around the track in circles. The miniature Kidney Walk was in honor of 2nd grade teacher Nicole O who received a kidney transplant in 2013.

“A lot of the kids wanted to do something to show they care,” said Barrow Elementary teacher Tracey H. “Everybody at school loves Nicole, and this is a good way for kids to learn about their kidneys and show their support.”

Nicole, who lives outside of Brazoria, TX underwent the kidney transplant operation in 2013 after her kidneys failed due to a genetic kidney disease. In order to get the kidney, her husband, Eric, participated in a three-way kidney swap with other individuals in California and Missouri.

“Everything fell into place perfectly,” said Nicole of the procedure. “I felt so good afterwards that I was ready to go to work the next day.”

Now that both Eric and Nicole have fully recovered, the transplant has given Nicole the opportunity to participate in research studies that could help other transplant patients. It has also revealed to her just how widespread kidney disease is in her community.

“Since this happened, I’ve talked to a lot of people and realized that kidney disease is more common than I ever thought,” Nicole said. “I have friends who have relatives going through dialysis, you just don’t hear about it every day.”

Nicole is taking her story of hope to the Kidney Walk to support others with kidney disease and fund kidney disease research. She is honored that her co-workers and students have also stepped up for the cause, raising over $3,000 for the National Kidney Foundation.

“The school, students and everyone have been amazing and so supportive,” she said. “It’s been such a remarkable experience.”

 

Co-Workers Share Office and an Organ

r-_BostonBillnDeb Deb Dalton gave a kidney to Bill McIntire in December; they will spread organ donor awareness at the Boston Kidney Walk on October 28.

Sharing an office doesn’t always mean you’d be willing to share the gift of life with the person in the next cubicle, but that’s exactly what happened at one Wakefield, Massachusetts business.

 Bill McIntire, a sales manager at Persian Acceptance Corporation, was diagnosed with IgA nephropathy, a form of kidney disease, when he was 23. While his condition was stable throughout his 20s and 30s, he began developing symptoms including hypertension and gout, and his doctors noticed a steady decline in his kidney function.

 “I was gradually losing my kidney function,” McIntire said. “In 2006 we started talking about the inevitability of transplant as the best option.”

 McIntire started looking everywhere for someone who’d give up a kidney but it is difficult to find a willing donor, let alone someone who is also biologically compatible. McIntire was ready to give up his extensive search and resign himself to a life tethered to a dialysis machine while waiting for a cadaver donation –when a co-worker, Deb Dalton stepped forward to be tested. She was a perfect match.

 “It seemed like the right thing to do,” Dalton said. “I checked my family’s medical history and realized we didn’t have kidney disease so I got myself tested. The way I viewed it –you don’t need two kidneys and Bill needed one. It didn’t seem right that he should have to go on dialysis.”

McIntire was blown away by the 11th hour gesture.

 “Deb and I were always friendly, but I never thought she’d be that kind of friend,” McIntire said. “That’s the real miracle of the story — that she came forward and was so willing to donate.”

The surgery occurred in December, and after a quick recovery, both Bill and Deb were back in the office and feeling great.

“I would do it again if I could,” Dalton said. “It wasn’t a big deal, and I think more people should consider becoming organ donors or living donors if they aren’t at risk for kidney disease.”

Both Dalton and McIntire are now using their story to spread awareness about kidney disease and the need for organ donors. They will participated in the Boston Kidney Walk on October 28.

“People don’t realize how common kidney disease is,” McIntire said. “The cause obviously means a lot to me, and although I hate clichés, I really want to give back.”

Tot Saved by Mother’s Transplant

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Andrew Johnson and his family spread organ donor awareness at the Boston Kidney Walk

 Four-year-old Andrew Johnson is an energetic kid who loves preschool, swimming and ice skating.

No one would believe that at one point, medical professionals didn’t think Andrew was going to have a chance at a normal life. Only 19 weeks into her pregnancy, Tara Johnson and her husband, Kevin, learned that their baby had a serious blockage in his urethra. When he was born, it was discovered that the blockage had caused severe kidney damage. Within a year, baby Andrew was placed on dialysis while Tara and Kevin struggled to get him to a proper weight so he could be eligible for a life-saving kidney transplant.

Then in March 2011, Tara gave Andrew life for the second time, when she donated one of her kidneys.

“The donation part was easy,” she said. “Who wouldn’t do that for her child? There was so much preparation to get him ready, so for us it was incredible finally getting to that day.”

And today, he’s no different than any of his peers.

“It’s funny what a new kidney will do to you,” said Tara.

And yet, the Johnsons are already planning for Andrew’s next challenge – the likelihood that he will need another kidney in his teenage years. Kevin is a blood type match and will likely be the next donor in line.

“Although kidney transplants are lasting longer and longer, they still don’t last forever,” said Kevin. “And yet who knows what advances in medical technology will mean for Andrew?”

The Johnson family is now using their story to spread awareness about kidney disease and the need for organ donors and kidney research. The family participated in the Boston Kidney Walk in October.

“Andrew has been able to live beautifully for the past four years because of research and advances that have been supported and advocated for by the National Kidney Foundation,” Tara said. “We’re walking to bring people together, and to celebrate the positive outcomes for everyone like Andrew.”

Transplants Save Life, Twice

Not everyone gets a second chance, let alone a third chance, at life; but Mike Maker is one of the few who have had not one, but two kidney transplants. r-MikeBoston_andColleen“I certainly wouldn’t be here and healthy today if it weren’t for my two kidney donors,” Mike said. “Luckily, I had very loving and willing people in my life. I know not everyone is so lucky.”

Mike’s kidney problems began when he was still a teenager. At the time, he was having trouble walking and his legs were hurting. Investigation by doctors found that one of his kidneys had failed and the other was following suit.

“I was only 16 and I needed a transplant immediately,” he said

In July of 2002, Mike received the first kidney from his mother Fiona. It was a gift that lasted nine years until 2011 when the medications he was taking to prevent his body from rejecting the donated kidney were found to be damaging the very organ that was keeping him alive. Mike was placed on dialysis for most of 2011 when his fiancé, Colleen, stepped forward to be his second donor.

“The second one was scarier than the first; there is a lot more that can go wrong,” Mike said. “But we both recovered just fine and we were able to get married and even enjoy our happy honeymoon in Belize.”

Mike is now using his story to spread awareness about kidney disease and the need for organ donors. He and his wife both participated in the Boston Kidney Walk on October 28.

“My efforts are to raise awareness for organ donors,” Mike said. “A lot of this can be avoided if there are people willing to donate. You just have to look at me and see that transplants do save people’s lives. This is something people can do for someone else in need.”

One Fateful Kidney Stone

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Kate Hetzel had a kidney stone that changed her life, now she spreads kidney disease awareness at the Philadelphia Kidney Walk.

 

A kidney stone both changed, and saved, Kate Hetzel’s life. The 24-year-old nurse was told that the kidney stone was the least of her worries when she went the doctor. There was a cancerous mass on her right kidney. After battling the cancer, and undergoing the removal of her kidney, Kate is now making strides to spread kidney disease awareness and is participating in the Philadelphia Kidney Walk.

“I had a kidney stone and went in to get a scan done,” Hetzel said. “They found the stone, but they also found a mass on my right kidney. It was the luckiest kidney stone anyone could have had.”

Hetzel was diagnosed with kidney cancer and doctors performed a partial removal of her kidney. However, the cancer spread to her lymph nodes, a rare occurrence called kidney translocation carcinoma.  After additional surgery and the full removal of the problem kidney, Hetzel’s condition stabilized and now she is making it a goal to spread kidney disease awareness.

“I am down to one kidney, but I am feeling good,” she said. “It was after my surgery that I learned about the Kidney Walk while I was looking to see if there were any organizations dedicated to helping those with kidney translocation carcinoma or other kidney diseases.”

“I walk to raise awareness because even people at a young age can have kidney problems,” Hetzel said. “That’s a big misconception out there, and I know, kidney disease can happen to someone young as well as old.”

Meet the Paglio Family…a 2013 National Kidney Walk Ambassador!

Share your spare leaning lookJames is one of roughly 750,000 people in Maryland who suffer from some form of kidney disease. We knew during my pregnancy that something was wrong with his bladder and kidneys because there was very little amniotic fluid and the ultrasounds showed abnormalities. When he was born, he was already experiencing kidney failure. We thought we were emotionally prepared for his birth and the potential complications, after all, he’s our 6th child and babies were not new to us.

We were thrilled when he was born.  It was Father’s Day and he was the perfect gift.  He looked absolutely healthy. Everyone, all the doctors, breathed a sigh of relief.  We thought we were in the clear. Just to be safe, the pediatric urologist performed a series of tests to track his urological flow, so to speak.  We were devastated with the results.

James was diagnosed with severe bilateral renal dysplasia accompanied by hydronephrosis caused by grade 5 vesicoureteral reflux.  It’s quite a mouthful, but basically it means that his kidneys are underdeveloped and abnormally developed because of high levels of urine that backed up into his kidneys.  This all started at a critical developmental point in utero and the damage it caused meant that his kidneys would never function at a level necessary to support his body.

With that diagnosis, James went from being a beautiful healthy baby getting ready to go home, to a beautiful, but critically ill, baby with teams of doctors working to ensure he survived.  There were neonatologists, urologists, geneticists, and there were doctors we had never before heard of — nephrologists.

Even though we knew before James was born that there were going to be Share your spare standingcomplications, we really had no frame of reference for the extent of those complications.  We have no history of kidney disease in our families.  We have no history of diabetes in our families.  We had five wonderful, healthy children before James; and James just does not fit in with our standard image of someone at risk for kidney disease.  And yet, there he was, in the NICU attached to wires and tubes getting venous blood draws every 6 hours to check for renal function.  The nephrologists started telling us things about James’ future.  They used words like, feeding tube, dialysis, and transplant.  We were so afraid for our son.

Like any emotionally shattered and frightened mom, I went home and started researching kidney disease on the internet.  I found that it was incredibly difficult to find information about kidney disease from the pediatric standpoint.  I was thirsty for information, and almost every book or article I could find, looked at the disease from an adult perspective and failed to take into consideration the unique challenges facing pediatric patients.  Then I came across the National Kidney Foundation’s website.  There I found the information I needed. The research and knowledge was compiled and laid out in a way that I could understand.  I used that information to explain James’ health and prognosis to our families and friends. More importantly, I used that information to advocate for my son and work with his doctors. I learned as much as I could about his disease, as fast as I could, so that any decisions we made about his care, would come from understanding instead of fear.

James had his first surgery at a week old and was stable enough to come home at less than a month old.  When he first came home, we still had to take him to the doctor for blood pressure checks, weight checks, and lab draws about every other day.  As he’s gotten bigger, we’ve been able to taper off to every 2-3 weeks with a goal of going a month between checks.  James takes eight medications three times daily in addition to weekly injections to help what little kidney function he has and deal with his secondary diagnoses of hyperparathyroidism, hyperkalemia, and severe anemia.  He is basically 100% fed through a tube and receives therapy to help him learn to talk and eat.  This is his normal. He takes his meds like a champ and never ever cries when getting his blood drawn.

James and Mommy walking with the NKFJames is nearly two and has lived his whole life with kidney disease. This time has been such a blessing.  We look at James as he defies the odds and we feel lucky.  With every milestone he meets, every ounce of weight he gains or every inch he grows and with every good lab draw we are thankful. But we know it won’t last.  He will outgrow his kidney function and his health will deteriorate.  We know this and we dread it.

It’s a very lonely feeling when you have a chronically ill child.  But we have found kindness and support from our friends and military family. We have found understanding and a sense of community with NKF of Maryland. We walked with family and friends in the NKF Kidney Walk and raised almost $1,700.  I’m proud of that, but this next year I want to do so much more.

Research funded by organizations like the NKF has led to wonderful advances in care.  Not long ago CKD (Chronic Kidney Disease) and ESRD (End-Stage Renal Disease) were death sentences. But thanks to the NKF, there is the possibility of lives lived well.  Instead of mourning his loss, we get to enjoy James’ life.

However, we still need a cure. James is stable right now with the help of a lot of medication.  When he weighs enough, he will get his first transplant. But that transplant is a treatment, not a cure.  James will likely need two or three transplants throughout his life.  Each of those transplants will mean that James’ health has declined. Each of those transplants will carry the burden of immunosuppression and increased chances of cancer and other diseases. Each of the transplants will mean time spent away from family, time in the hospital and time spent every day taking just the right balance of medication to keep that kidney from rejection. Each of those transplants is borrowed time. And every one of those transplants will mean finding a selfless living donor, or relying on the heart wrenching gift of a deceased organ donor. Share your spare big smiles

There have been tremendous advances in medicine over the past few years that have allowed our son to live and thrive. With the continued efforts of the NKF, I hope that my son will live to see, not just a treatment for his disease, but a cure. Thank you so much for all your efforts to make that cure his reality.