Tag Archives: polycystic kidney disease

Touched by Transplant: Life With PKD and My “Superhero” Living Donor

Help Hope Live patient Liz Casperite received a kidney transplant with help from living donor Maria Weaver-Hollowniczky in September 2015. The lifesaving gift to fight Liz’s polycystic kidney disease (PKD) cut short her anticipated 5-year wait for a deceased donor kidney. Here’s how Liz has been touched by transplant.

Touched by Transplant 2017 Help Hope Live


If you are like most people, polycystic kidney disease (PKD) is the most common genetic disease you’ve never heard of. I was diagnosed with PKD in 2004 at age 32. A routine physical found slightly elevated blood pressure. My general practitioner was proactive in ordering additional tests. During the final test, an ultrasound, they found innumerable cysts on my kidneys and liver. Average kidneys are the size of a fist. My kidneys were growing to the size of footballs.

Liz Casperite Help Hope Live

Liz was diagnosed with polycystic kidney disease in 2004

When you have PKD, the veins in your body that help filter blood grow into irregular cysts instead of growing straight. Eventually, blood that gets caught in the cysts and doesn’t filter leads to kidney failure.

After I was diagnosed, I learned that PKD affects more people than sickle cell anemia, cystic fibrosis, muscular dystrophy and down syndrome combined. I also learned that there is no cure for PKD, and that my best chance for a healthy life would be to join the kidney transplant waiting list. I was on the transplant waiting list for two and a half years without getting “the call.”


When I was in renal failure due to PKD, I had very little energy. As my kidney function decreased, I could really only do one activity per day: take a shower, cook, or grocery shop, but not more than that. My kidney function dropped below 20% and I knew I did not have long before my kidneys would fail. More than 10 people were tested to become a living kidney donor for me, but none were approved through the rigorous health testing process.

Liz Casperite Help Hope Live

Once listed, Liz reached out to find a living kidney donor

I got the word out that I needed a living donor using car magnets, t-shirts, and even a sign outside of my house. A friend created a post for me on Facebook and, as friends shared it, a total stranger to me saw it and decided to get tested. That’s how I met my angel, Maria!


After months of testing, we found out that we were a match. I was very fortunate to receive a kidney from a living donor right before I would have had to go on dialysis. Living donor kidneys last almost twice as long as deceased donor kidneys, on average.

Maria hates being called a hero. But she’s reluctantly agreed to the title “superhero” instead! She says that since health was her superpower, she knew she had to share it with others.

Liz Casperite Help Hope Live

Living donor Maria, left, has “reluctantly agreed to the title of superhero”


Many people think transplant is a cure, but really, a transplant is just a treatment for kidney failure. I am fortunate in that my PKD will not attack the new kidney, but I have a polycystic liver that will continue to grow in size and will require additional treatment.

Today, I follow a strict regimen to suppress my immune system to keep the kidney. I take medication every day, exercise and eat a plant-based whole foods diet. Even though I went to physical therapy after the transplant and followed doctor instructions, I got a serious hernia. An operation fixed the hernia but I am now restricted from ever lifting more than 10 pounds. As a treatment, transplantation comes with its own very serious side effects. Being permanently immunosuppressed means being very careful about who I encounter. Even a small cold can negatively affect my new kidney function.

Liz Casperite Help Hope Live

Liz says life after transplant involves permanent lifestyle changes


I still actively fundraise for Help Hope Live. The funds raised in my honor are indispensable for helping me cover the monthly cost of post-transplant medications and trips to and from my transplant center for continuing care.

Liz Casperite Help Hope Live

Liz creates Donor Beads in exchange for donations to Help Hope Live


I am a very active advocate for transplant. I have been lobbying Congress since 2006 to support kidney-related health care legislation. Maria and I were recently in DC to lobby for the Living Donor Protection Act of 2017 to help eliminate barriers to living donation. We volunteer with the National Kidney Foundation, the PKD Foundation and Gift of Life, and we participate in walks and events every year to raise funds and awareness. I have spoken at high schools about kidney disease and we both act as mentors to those starting out the transplant process. There are almost 100,000 people waiting for a kidney in the U.S. and we are passionate about spreading the word to make a difference.

Liz Casperite Help Hope Live

Liz, right, uses every opportunity to advocate for kidney disease patients and donors

My donor, Maria, and I speak to everyone we can about living donation. Maria was inspired to donate a kidney to me because she knew someone who had donated. We hope to be those people for others.

Liz Casperite Help Hope Live

“Kidney sisters” Maria and Liz


Touched by Transplant 2017 Help Hope LiveLiz and Maria support transplant candidates and living donors through the Kidney For Liz Facebook page. Liz fundraises for the Mid-Atlantic Kidney Transplant Fund at helphopelive.org

6 People Who Inspire Us With Courage, Strength and Selflessness

Our signature fundraising gala Live It Up! kicks off at 6 p.m. on Friday, September 23, 2016 with a VIP reception for our generous sponsors and this year’s Live It Up! Awardees. Doors for the main event open at 7 p.m. Get your tickets today!

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Each year we honor individuals who have impacted our organization and their communities with their bravery, selflessness and strength with our annual Help, HOPE and Live Awards.


This year’s Help Award goes to…The Zeldathon Team for excellence in fundraising.


In December 2015, a group of avid video game players and live streamers joined forces for a 150-hour “The Legend of Zelda” gaming marathon. Streaming their activities live, the gamers collected donations for HelpHOPELive throughout the course of the marathon. Gamers encouraged donations from viewers at home by initiating “donation trains” and incentives, turning watching gameplay into an interactive and collaborative philanthropic experience.

Zeldathon Hope raised over $250,000 for HelpHOPELive through the generosity of contributors in over 40 countries. The funds raised were used to meaningfully contribute to HelpHOPELive’s mission to support community-based fundraising support for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses and to provide one-time emergency assistance grants for families facing an immediate financial need due to a medical crisis.

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“We pursued HelpHOPELive because we wanted to work with a charity that could make a direct impact through donations,” explained Zeldathon executive director Matthew Moffit. “We’re creating something more than just a marathon – it’s a real community, dedicated to the forces of good.”

Moffit, Zeldathon assistant director Liz and spokesperson Brooke are among the dedicated gamers who devoted their personal time to planning, managing and streaming the nonstop gaming marathon. They hope to support HelpHOPELive’s mission again during a future Zeldathon.


The HOPE Award goes to…Maria Weaver-Hollowniczky and Elizabeth Casperite for living donation and organ donor awareness.


Liz Casperite was diagnosed with polycystic kidney disease in 2005. Her kidneys grew from fist-sized to football-sized. She joined the transplant waiting list in 2013, facing an average wait time of 4 or 5 years.

Liz and her family initiated a social media push to help Liz cut her wait short by finding a living kidney donor. Maria Weaver-Hollowniczky, a friend of a friend, saw Liz’s social media efforts and felt moved to step forward as a potential living donor.

Liz received the gift of life from Maria on September 17, 2015. Liz and Maria became inseparable during transplant preparations and have stood by each other ever since, partnering to share their story and lobby Congress in support of living donor protection legislation. They attended the 2016 Transplant Games in Cleveland, Ohio.

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Fundraising with HelpHOPELive will be an ongoing effort for Liz, who still faces post-transplant medical expenses from co-pays and travel for follow-up appointments to a lifetime of expensive antirejection medications. Liz must maintain Medicare A and B coverage until 2018 to financially protect Maria in case of post-transplant complications—something they hope to change for future living donors through their advocacy of the Living Donor Protection Act.


The Live Award goes to…John Michael LeMoine for inspiration after injury.


In July 2014, John Michael LeMoine was an Air Force airman enrolled in a firefighting technical school. On a day off, John was goofing around on the beach with his buddies. To avoid hitting a child playing on the beach, John jumped into the air to try to flip over him. He kept the child safe but shattered his cervical spine in the process.

It took six weeks of intensive therapy before John could wiggle his big toe.

John devoted himself to exercise-based therapy. Once insurance stopped covering his physical therapy, he turned to HelpHOPELive to fundraise for a lifetime of out-of-pocket medical and related expenses. In March 2015, John was able to stand independently for the first time since his injury.

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John and his mother, Lori, document his progress and his post-injury adventures, including skydiving, off-roading and adaptive sports with support from the Air Force Wounded Warrior program. “He can now make a sandwich,” Lori wrote in February 2016. “It seems so simple, but this was an impossible task before. These small achievements give him his independence back.” John embodies what it takes to build an engaged, motivated and multi-faceted new life after injury.


This year’s awardees will be honored at Valley Forge Military Academy’s Mellon Hall on September 23 from 7 to 11 p.m. among HelpHOPELive’s generous local supporters, board, staff and friends. Join us to celebrate the incredible milestones clients, volunteers and donors achieved in 2016!

Meet HOPE Award Honoree Jim Melwert

Each year at HelpHOPELive’s annual fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.

This year, the HOPE award will go to KYW’s Jim Melwert for his selfless gift of life through living kidney donation.

Jim Melwert gold medal

We honor Jim Melwert for giving the gift of life.

In 2006, Jean DelMuto was struggling with the painful effects of polycystic kidney disease. Facing at least a 5-year wait for a kidney transplant, Jean’s health deteriorated so rapidly that her manager established an in-office cotthat she could use for the naps she needed to take just to make it through each workday. As Jean was entering some of the most challenging health circumstances of her life, her nephew Jim, made her a stunning offer: the gift of life.

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Jim Melwert with his aunt and recipient, Jean.

Jean’s nephew, Jim Melwert, is the Suburban Bureau chief for KYW Newsradio 1060. When he heard about his aunt’s struggles to secure the transplant she so desperately needed, Jim made the selfless decision to donate one of his kidneys to save her life. He made the life-changing donation on February 27, 2006, a date that he and his aunt will never forget.

For many, a transplant represents a “second chance” that can inspire recipients to make commitments to maintain their health and make the most of their future. Jim turned his gift to Jean into his own “second chance”: he began giving serious consideration to his own health, making a decision to start training for and participating in a series of impressive athletic challenges. Since giving a kidney to his aunt in February 2006, Jim has participated in competitions including Ironman events, the Transplant Games, 5k swims and Donor Dashes to honor other organ donors and recipients.

Jim Melwert Transplant Games gold medals

Jim, left, began participating in athletic competitions like the Transplant Games after giving the gift of life.

In 2013, Jim delivered a powerful address as the keynote speaker for the Gift of Life Donor Program’s Living Donor Recognition Ceremony. “As a reporter, our personal experience helps shape who we are and how we see the world,” said Jim. “Being a living kidney donor, I see the triumph of the human spirit, science and the human body. Every single donor [has] the courage, the love and the desire to make a difference. There are no words to explain how it feels to see the difference we’ve made.”

Jim Melwert Jean DelMuto Donor Dash transplant living donation donate life

Jim and Jean celebrate the gift of life together at a Donor Dash event.

HelpHOPE-Live It Up! logo Live It Up! Live It Up 2015 annual event charity galaOn October 16, 2015, HelpHOPELive will honor Jim Melwert for giving the gift of life with our signature HOPE award. Join us to celebrate the power of transplantation, selfless giving and second chances.