Tag Archives: Liz Casperite

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!

The 2016 Transplant Games In 3 Words: Joy, Inspiration, Resilience

Every year, the Transplant Games provides an opportunity for transplant recipients and donors to come together to celebrate the gift of life. This year’s Games were held in Cleveland, Ohio from Friday, June 10 to Wednesday, June 15. The Games included over 6,000 registered participants. We interviewed a few HelpHOPELive families who attended and competed in the Games. Here’s how they described the experience.

Transplant Games 2016 HelpHOPELive

Bill Soloway, 1-year post transplant, attended the Transplant Games


What made you want to attend the Transplant Games this year?


Transplant recipient Liz Casperite: I can’t remember the first time I heard about the Games, but I always knew I wanted to attend them after I received a transplant. In order to attend, you need to be at least nine months post-transplant with a doctor’s permission. The cutoff this year was October 1 and my transplant was on September 17, so we just qualified! Cleveland was my first Games, but it won’t be my last.

Liz’s living kidney donor Maria Weaver: As soon as I heard about the Games from my recipient, even before the transplant, I wanted to go! It sounded like an amazing event and a chance to keep exploring my new identity as a living donor while meeting more people in the transplant community.

Transplant Games 2016 HelpHOPELive

The Games took place in Columbus, Ohio in 2016

Transplant candidate Pat McEntee: I first heard about the Transplant Games about a year ago when I met some members of Team Ohio at an event in Columbus. I decided I would attend as either a participant or a supporter. My wife, Amy, and I went as supporters this year and just enjoyed the event, meeting people, sharing our story and listening to others’ stories. The fact that the event was in Cleveland near my transplant center, Cleveland Clinic, was an added bonus just in case I got “the call.” I hope to be able to attend AND participate in the Games in 2018.


What are some of the things you saw at the Games that made you glad you went?


Liz: My donor and I spent time watching track and field and saw some amazing athletes who brought everyone joy and inspiration. There was a woman who ran her first 100-meter dash with the aid of her cane, and a 2-year-old whose dad had to hold him back until it was time to run. These athletes made me see there is nothing I won’t be able to do with my new kidney. My donor and I participated in donor/recipient bowling. We were teamed up with a donor mom and her friend. We had so much fun being terrible bowlers.

Maria: It made me happy to see all the donor families wearing pins for their loved ones and talking about their experiences. Many were able to meet their recipients at the Games and it made me happy to hear and see their relationships. I loved seeing the smiles of the last place finishers as they plugged along the track and the crowd went wild for them! It was all about being there. It was a privilege to talk to people in the “quarter-century club” who had had their transplanted organs for 25 years or more. We heard so many stories.

Transplant Games 2016 HelpHOPELive

“We heard so many stories,” said living donor Maria Weaver

Pat: I was extremely moved by some of the stories I heard both during the Opening Ceremonies and just in talking to people I met. In watching the Games, I was impressed with the camaraderie that took place. After a hard-fought win in a close basketball game, Team Louisiana embraced members of Team Kentucky. It was nice to see people compete hard and win or lose with class.

Transplant Games 2016 HelpHOPELive

“I was impressed with the camaraderie,” said Pat McEntee


Do you think events like the Transplant Games make a difference?


Liz: The Transplant Games made a difference for me because I was able to meet recipients who have had their transplant for more than 40 years and get their advice. I was inspired to train for more events for the next Games. The community was also inspiring. We told our story to many people – Uber drivers, waiters, really anyone we met. The manager of an ice cream shop was so inspired that she volunteered for five hours at the Games the day after we met her!

Maria: I DO! I felt like I was in a protective bubble full of all of the most amazing people in the country. People who were handed crappy circumstances or fear or tragedy let it shape them into strong people full of love. The strength and grace I saw…wow! Puts things in perspective. I posted a lot of pictures and stories to Facebook and I got comments from people who said they felt the love and inspiration just from seeing them. It helped them to see this during a week in which the news was full of tragedy. I came away completely inspired to go back to the Games in 2018, meet up with the amazing people I met and became close to so fast, and do more athletic events!

Transplant Games 2016 HelpHOPELive

“I was inspired,” said transplant recipient Liz Casperite

Pat: I feel like people would come and enjoy themselves even if there was no competition at all. I think everyone realizes that the prize of additional life is already won, so what happens in the Games is inconsequential. Everyone still tries hard and competes hard for whatever reasons they choose, whether it is to honor their donor, celebrate the fact that they can participate or just to have fun.

Transplant Games 2016 HelpHOPELive

Win or lose, “the prize of additional life is already won”


Is there an emotional element to the Games for you?


Liz: The Games was a very emotional experience. The tribute to living and deceased donors was amazing. I was very touched by the stories of the donor families we met over the week. I was inspired by a mom who donated the organs of three of her murdered sons and was still positive and spreading the word about organ donation. As recipients, we are all helping to keep their loved ones alive. We made some great new friends that I can’t wait to see at the next Games.

Transplant Games 2016 HelpHOPELive

“The Games was a very emotional experience,” said Liz Casperite

Maria: I was on a high all week. I’ve never bonded so quickly with strangers. I talked to everyone I could, and hugged, and teared up, and high-fived them. It was really hard to leave, especially leaving my buddies from far away who I likely won’t see for two years. Being there with my recipient and getting to tell our story to people and walk in the 5K with her was priceless.

Pat: I was surprised at how emotional the event was. Even at times when I didn’t expect it, I found myself tearing up. The emotions of joy and laughter were also present throughout the days we spent there.

Transplant Games 2016 HelpHOPELive

Pat and wife Amy experienced a range of intense emotions


How would you sum up the experience in 3 words?


Liz: Inspiring. Fun. Heartbreaking.

Maria: Love. Resilience. Celebration.

Pat: Joy. Camaraderie. Compassion.

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What did the Transplant Games mean to you this year?


About The Transplant Games


The Transplant Games is open to athletes with any level of skill with games ranging from cornhole and basketball to track events and swimming. The Games welcomes first-time participants and veterans of all ages, like 4-year-old kidney transplant recipient Cooper, who finished the 23-meter dash grinning. The Games includes donors and recipients from all 50 states as well as multiple countries. There are 21 medal competitions in total and all are free and open to the public.

Transplant Games 2016 HelpHOPELive

The Transplant Games are open to donors and recipients of all ages

Did you participate in the Games this year? How was the experience? Tell us about it on Facebook.