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.

Tot with Kidney Disease Inspires Action and Promotes Awareness

r-LAEvanBeierMost parents think their children are miracles, but Alison Beier and Daniel Benner’s three-year-old, Evan, truly is the embodiment of the modern miracle.

While he was still in the womb, doctors realized Evan’s kidneys had failed due to problems in their development. The prognosis was grim.

“Many doctors told us our child had no chance of survival,” Alison said.

When Evan was born at 32-weeks, doctors still thought he wouldn’t last the night, but he did, and spent his first 168 days between two hospitals. He was eventually placed on hemodialysis. All the while, his mother and father struggled to get him to a proper weight so he could receive a life-saving kidney transplant.

Then, this past March, his mother gave him life for the second time when she donated her kidney to him. It was a rare operation–doctors at UCLA performed a blood-type incompatible transplant, removing Evan’s antigens that would have rejected his mother’s kidney. It was the first ABO-incompatible pediatric kidney transplant that was performed at UCLA.

“Evan was given a chance at having a real life with his transplant,” Alison said. “We didn’t realize how hard dialysis was for him until after he received his kidney.  He’s got a ton of energy now and has been having normal, healthy growth spurts in all areas of his life.  He enjoyed life before, but today he’s a fully spirited participant.”

Evan’s family are now helping spread awareness of kidney disease and giving hope to other families going through the trials of kidney disease.

“We want to be able to give back,” Alison said. “Evan wouldn’t be alive if it wasn’t for the technology, the Medicare coverage and information that has been advanced by organizations like the National Kidney Foundation.”

In October, the Beiers attended the Los Angeles Kidney Walk.

“I walk to support others, to let them know that kidney disease is not the end,” Alison said. “If kidney failure is on the horizon, there are options, diets and treatments to sustain life.  For those at risk, lifestyle changes may be able to prevent future kidney disease.  Whatever the prognosis, there is hope.”

Meet The Brandon Family…a 2013 National Kidney Walk Ambassador.

Our story starts out the same as many others; once upon a time, there was a healthy young boy. He went to school and played with his friends. He had no cares except for saving for his next video game and hoping to play paintball with his brother-in-law.

We were not prepared for our son Tommy’s serious diagnosis. In November 2010, we took Tommy to the doctor for a routine wellness visit. While looking at his chart, his Awareness Bands_1pediatrician was concerned with his apparent slow growth. As the doctor progressed through Tommy’s exam, she decided to order some blood and urine tests. Although the doctor had ordered tests and showed some concern, we were not overly worried.

In the evening on the following Friday, we received a phone call from the doctor’s office. They had found blood and protein in Tommy’s urine and additional tests were needed.  When we asked them what this meant, they replied that there may be a problem with his kidneys. His pediatrician wanted him seen by the nephrology team at Children’s Hospital and it was likely they would perform a biopsy.  The pediatrician’s office would schedule an appointment and call us on Monday. It was the longest weekend of our lives.

During that weekend, we decided to make sure Tommy had the best care possible so we spent the weekend on the internet researching medical facilities. We decided that University of Michigan’s Mott Children’s Hospital would meet Tommy’s needs the best.  It was difficult for us to get an appointment. A referral from the pediatrician had to be reviewed, as well as his medical records. After a week of relentless phone calls and red tape, we finally were able to get the needed appointment. It was worth the wait because Tommy’s nephrologist has been fantastic.  A biopsy was quickly scheduled.  After several weeks of waiting and trying to keep life normal, the results came in.  Tommy had a disease called Membranoproliferative Glomerulonephritis Type 1 or MPGN for short.  It is a rare, progressive autoimmune kidney disease with no known cure. We were told that half the kids go into renal failure within 8-10 years. We also learned that little is known about this disease.  There was no way to predict how Tommy would do. We thanked God that he was diagnosed before he had symptoms or significant kidney damage.

The first six months after diagnosis were extremely difficult. You try to keep things as normal as possible but it’s hard with all the doctor visits, medical tests, waiting for tests results, monitoring medications, and trying to explain to a nine year old why it’s all necessary.

2186 Tommy ribbonOur path on this journey has been easier because of the support from the National Kidney Foundation. Since our goal was to maintain life as normal as possible, we hoped Tommy could go to overnight summer camp. The previous year we had sent him to a wonderful 4H camp almost three hours away, but we were concerned about having him so far away after just starting treatment. Our research for a closer camp led us to find an article about the National Kidney Foundation camp in Michigan. It was only 45 minutes from home and the NKF would have medical staff onsite to oversee his care. I immediately called the local NKF office in Ann Arbor, Michigan and was put through to Bob Meyers. He was absolutely wonderful and assured us that they had a place for Tommy to attend and that they would take great care of him. They offered Tommy a scholarship to help with the expenses. We knew right then that we needed to find a way to support NKF, the same way they supported us.

We participated in our first Kidney Walk in spring 2011 to raise money for the NKF. Our oldest daughter, Samantha, had organized a walk team for another charity so we knew this was our answer. Sam agreed to co-captain with Tommy. Our team was named Tommy’s Army after Tommy’s interest in the military. 2200 group aWe were disorganized and fumbled our way through the process of fundraising but somehow we managed to raise $11,000.00.  We took first place in the family and friends category. When we look back at the whole experience, it was the support from our family, friends, employers, coworkers, and the community that truly overwhelmed us. So many people either donated or joined the team and it spoke volumes to us on how much people cared about Tommy and our family.

Aside from soliciting funding for the NKF, another goal of our team is awareness and understanding. We want to make people aware of this rare kidney disease while letting people know that kidney disease, in general, is not rare. We’re hoping that an increase in awareness will bring about an increase in research. We’re also hoping to make life healthier and happier for people diagnosed with kidney disease, and hopefully help people get diagnosed early.

Since that first walk, we have branched out and became more involved with our local NKF office. We treasure the friendships we have developed with the staff.  We understand that many of them are kidney patients themselves or have a family member that is a kidney patient. We have become believers in the work of this foundation, bringing awareness to the public of kidney disease and providing support to kidney patients and caregivers.  Our team walked again in 2012, raising approximately $25,000.

JeepToday, Tommy is responding well to treatment and has two-year plan utilizing steroids and other medications to control his MPGN.  His recent lab results show his disease has slowed and his tests are within normal ranges.  They will reassess his progress in 2013. Whatever the future holds for Tommy and us, we know we can count on the support of the National Kidney Foundation.

2013 National Kidney Walk Ambassadors

Walk_Lockup_NewLogoWe are pleased to announce our 2013 National Kidney Walk Ambassadors – the Brandon Family, the Imbriale Family and the Paglio Family.  These families were nominated by their local staff partners and will serve as the faces of the Kidney Walk this year by sharing their stories on a national platform.  We will introduce each family over the next few months by posting their stories on social media, the Kidney Walk website and in other publications.

What is a National Kidney Walk Ambassador?  A National Kidney Walk Ambassador is a family or individual who shares his/her story to inspire others and raise awareness and funds for kidney disease during the upcoming walk season.

What are the expectations of a National Kidney Walk Ambassador?

  • Agree to share story and pictures for use in National Walk Materials including but not limited to, brochures, blog postings, Kidneywalk.org website
  • Nominees have participated in their local Kidney Walk for at least a year and are planning on continuing their support for the following year
  • Agree to participate in local walk related activities as well as occasional national calls to inspire staff and volunteers
  • Contribute occasional blog posts for the Kidney Walk blog either to share their story, major milestone in treatment, or to motivate walkers

How are the National Ambassadors chosen?  Kidney Walk Ambassadors are nominated by local divisions and affiliates in the summer.  A maximum of three ambassadors will be chosen from the following categories (Nephrologists, Donors, Recipient, Caregiver, Patient) by National Kidney Foundation Leadership.

How can I become a National Kidney Foundation Ambassador? Contact your local National Kidney Foundation Office.

For more information please contact Deanna Bucciarelli at deanna.bucciarelli@kidney.org.

A Kidney Connection Turns into a Calling for Co-workers

r-Jami and Kristin (2)Jami Kaelin and Kristin Wilson work side by side at Community First Credit Union every day, but it took a while for them to realize just how connected they really were.

 “We’re both kidney recipients but we didn’t know it about each other because that’s the way this disease is,” Jami said. “No one talks about it, you don’t know if someone you pass in the street has it.”

Jami has a rare kidney ailment known as Dense Deposit disease. She’s had two kidney transplants and the second one has lasted 11 years already. Kristin was born with kidney damage and had her transplant about a year and half ago. When a company newsletter highlighted Kristin’s transplant, the two forged a friendship and share a dedication to  the kidney cause.

“We wanted to combine our efforts and find an organization we could get behind,” Jami said. “We wanted to let people know they aren’t alone, that there are people out there who have been through this and want to help.”

Both Jami and Kristin have taken part in other charity walks, but this time they decided to start their own event dedicated to the fight against kidney disease. For the past few months they have been worked to organize the first-ever National Kidney Foundation Southeast Iowa Kidney Walk to be held in Ottumwa.

“We reserved a pretty big park, planned the route and made a Facebook page,” Jami said. “We recently got our first donation from a local business in Fairfield, and a lot of businesses said they would put together a team and will be there. Our workplace is going to help out too, along with Walgreens. It seems people are getting really excited.”

While starting out small this year, both Jami and Kristin are looking forward to continuing the Ottumwa event and making an impact locally in the lives of kidney patients.

FDNY Paramedic Saves Lives While Fighting Kidney Disease

r-paramedicVictor Potito, 36 of Flushing, is one of the thousands who attended the New York City Kidney Walk in October 2012. Potito has been a paramedic with the FDNY for 16 years. He worked at the World Trade Center on 9/11 and trains EMTs at Queensborough Community College.

 “He’s my hero,” said Ana Vivanco, who just married Victor in August 2012.

While Victor has dedicated his life to serving those in need of urgent medical care, he also has to care for himself. Victor has polycystic kidney disease, and will at some point need to go on dialysis or have a kidney transplant. Victor has known about his condition since he was 23, and has been able to slow the decline of his kidney function through healthy habits, weight loss and a careful diet.

“The best thing I can say is, go to your doctor and stay on top of your health s,” he said. “Sooner or later, it ends up getting the best of you and if you take care of it now it, you may  lead a longer life.”

Ana is hoping that her new husband will be able to continue his important work saving lives in New York City, despite the hard road ahead. To spread awareness and build a support network, they are getting involved with the National Kidney Foundation, and participated in the Kidney Walk, along with thousands of others who are fighting kidney disease, including Nick Cannon, entertainer and host of America’s Got Talent.

“I walk because I want him around until he’s 95,” Ana said.”But PKD does progress and leads to kidney failure. So raising awareness about kidney disease and the need for organ donation is very important to me and our family.”

Fighting Kidney Disease and Walking for Awareness

r-PinsentLeyla and Brett Pinsent were married less than a year when they hit their first major road bump – kidney disease.

Right before Christmas last year, Leyla started having severe chest pain – it was the first sign of a form of kidney disease called crescentic glomerulonephritis. By the time she was diagnosed, Leyla was close to kidney failure and doctors were cautiously warning that she might need a kidney transplant.

“It’s not something you expect to happen in your first year of marriage,” said Brett. “It makes you understand how precious life is.”

Leyla went through chemotherapy to prevent her body from attacking her damaged kidneys, and then started a process of rebuilding her immune system and kidneys through steroids and transfusions. She narrowly avoided dialysis. Slowly, her kidneys recovered from the brink of failure, an outcome that is not possible for the majority of kidney disease patients.

“I realize that I was extremely lucky,” she said.

Deeply impacted by his wife’s fight, and the other kidney disease patients the Pinsents met during their ordeal, Brett has decided to become an altruistic kidney donor. He will give up his kidney once Leyla has fully recovered and he is assured by doctors that she will not need a transplant herself.

“There were people around us who weren’t as fortunate,” Brett said. “I never realized how prevalent kidney disease is until Leyla got it. When you think of disease, kidneys don’t come to mind, but it is a really big deal.”

While waiting to donate, the Pinsents are getting involved with the National Kidney Foundation, and participating in the Los Angeles Kidney Walk.

This is a good way of making people more aware of kidney disease,” said Leyla. “If it helps someone to get their kidneys checked out, or convinces someone to become an organ donor, it’s worth it.”