Living with polycystic kidney disease (PKD), Liz Casperite received a life-changing kidney transplant in September 2015 when a stranger connected with her on Facebook and became her living donor.
Liz has been fundraising with Help Hope Live for more than 10 years. She became a client Ambassador in 2020 to help others discover our trusted medical fundraising support.
We asked Liz about life after transplant, finding Help Hope Live, and why she and her kidney sister are flying to Germany this year for a once-in-a-lifetime gathering.
Where has life taken you since your transplant?
Members of my family have had three major hospitalizations since 2017, and my transplant has allowed me to be by their sides to advocate and care for them.
I was able to return to full-time work after my transplant while continuing to volunteer with causes that I care about. In the past two and a half years, my husband and I have started traveling, which we love.
At the end of 2024, I went back to Germany for the first time in 25 years and was able to visit with family there, which was very meaningful.
I do still have lots of medical appointments to follow up with my new kidney and keep track of my polycystic liver. It can be challenging to find time for that. My dialysis fistula is now 10 years old and putting pressure on my heart, so that will be a surgery I need to schedule.
I thought I would feel “different” after transplant, but I still feel like just me—but now, I have an amazing kidney sister to thank for my every day.
Tell us about your plans for the 2025 World Transplant Games.
My kidney donor, Maria, and I participated in the Transplant Games of America in Cleveland in the summer of 2016.
The Games were so inspiring for us. We met so many people who knew exactly what we were going through. As a new recipient back then, I was so encouraged to meet people who were part of the “quarter-century club.”
Donor families are the most awe-inspiring part of the Games.
There is no more moving experience than to be able to celebrate the gifts they or their loved ones have given.
Due to COVID and schedules, we have been unable to participate in any of the Games since.
When Germany was announced as the host country for the 2025 World Games, I knew we had to a part of them and have been saving ever since!
2025 marks our 10-year transplant-iversary, and Maria will also celebrate her 50th birthday. We are both so excited to be able to participate.
How has your connection to the transplant community changed over the years?
After I was diagnosed with PKD, I was in denial for several years.
It is not a disease you can see on the outside, and 20 years ago, there was no treatment or cure. It was through advocating for the PKD Foundation that I first met people who were transplant recipients, and when my disease progressed to the point of being put on the transplant list, they were there to answer any questions I had.
After my transplant, I became the support system for several people who received their transplants after me.
A sister of a transplant friend who I lobbied Congress with had her transplant the year before me, and she was there for me at any hour, just a Messenger note away to offer her support and advice. I became that person for someone from a PKD Facebook group who received her kidney the year after me.
We all help each other. No one who isn’t a donor or recipient, even medical professionals, knows what you have been through.
There is a very special bond between recipients and donors. We wouldn’t be here living the lives we are without them. Every donor I have ever met has said if they could grow another kidney to donate, they would.
I am blessed to be so close to my own donor, Maria—a stranger who saw my need on a Facebook post.
She can see the difference she made in my life every day, and I live every day to honor her gift.
Why did you start fundraising for a kidney transplant with Help Hope Live?
When I was listed at my second transplant center, my social worker gave me a packet to read that included some of the lifelong costs associated with transplant.
There were several organizations listed on the last page, including Help Hope Live. Help Hope Live was right in my state and close to home, which made it a natural choice for me.
When I called, I was paired with a Client Services Coordinator who helped me get everything started. I moved forward with fundraising because of that one-on-one support I would receive from a Coordinator.
What appealed to me the most about Help Hope Live was that it was a charity, and my friends who wanted to help would be able to make tax-deductible donations.
Having support for fundraisers and the ease of submitting expenses both make Help Hope Live extra special. It also provided a way for me to reimburse my living donor for medical expenses and related costs that she incurred.
Fundraising helped me the most by giving me a way to cover the living donor costs incurred by my amazing donor. It also gave me the chance to stay near my transplant hospital, which is in another state, for a few weeks post-transplant/nephrectomy so that I could recover and be close to my almost-daily appointments.
Fundraising continues to help me every month with costly immunosuppressant medication that I need to take twice a day, every day.
The funds I raised also help with other medical expenses that are related to being immunocompromised, like the melanoma that my dermatologist caught early.
Everyone at Help Hope Live is so supportive. I am lucky to be close by and have been able to meet most of the awesome employees and participate in local events.
I started fundraising fairly close to my transplant. I had friends who own a hair salon who called my Coordinator and set up a fundraiser for my campaign without needing my involvement.
When I was recovering from my transplant and nephrectomy, I started making beaded bracelets. It was a fun hobby for me, and I gave them out to friends and at local events in exchange for donations to Help Hope Live and other kidney-related charities. It was a great success!
Help Hope Live has tools to help with fundraising: they made flyers and even had a credit card payment device I could use for collecting donations during my fundraisers.
Does fundraising still help you today?
I have not been actively fundraising recently, but I love the fact that I can create a fundraising event whenever I have the time or need to do so.
Just this month, I needed to travel to another state for a follow-up visit with my post-transplant nephrologist, and yesterday, I picked up my two immunosuppressants from the pharmacy.
Fundraising with Help Hope Live covered those costs and the medical travel expenses.
Help Hope Live also covers medical equipment needs. I developed a hernia after my nephrectomy that required extensive surgery, and I was able to use funds raised for bedrails to help me in and out of bed and for binders that I need to wear every day to prevent future hernias.
Why did you decide to become an Ambassador for Help Hope Live?
I love being able to support organizations and communities that I care about! The transplant community is so close-knit, and I love being an Ambassador because I can help people make an informed decision about raising money to help with transplants and the expenses around other lifelong ailments.
Help Hope Live is amazing to work with, and I want to help spread the word!
I have known people who have used other methods of raising funds that may not be through charitable organizations or could harm their chances of receiving state or federal aid. I want to help people avoid that mistake.
I have helped to spread the word about Help Hope Live by talking about the organization to everyone I meet.
My parents met a couple in their apartment building who were going through the transplant process, and I was able to sit with them and show them my own Help Hope Live Campaign Page and give them resources about the organization.
Since I am active with both the PKD Foundation and the National Kidney Foundation, I also use organizational events to let people know about Help Hope Live. I attended a PKD convention and was able to staff a Help Hope Live booth and talk about my experiences with Help Hope Live to the attendees.
Being close to Help Hope Live’s headquarters has allowed me to participate in local events, including gaming marathons and the Hope Travels 5K.
Last year was the first in-person 5K, and it was awesome to be able to share with many of the runners what Help Hope Live was all about and be the first person some of the runners had met who was a transplant recipient. I love being an advocate for organ donation!
How can patients or their loved ones support the transplant community?
The work is slow but lobbying your state and local officials for better health care, or protections for living donors, is an awesome thing to do. Like me, you might be the first person some of those lawmakers have met or hear from with your disease or concern, which means that you become the face of that concern to them.
Maria and I visited Capitol Hill together for the first time one week before our transplant!
I have also participated in clinical trials that have helped develop new blood tests.
No matter who you are, you can also advocate for the needs of others or simply share a post on Facebook—it could find your friend a donor, like it did for me!
What does the word “hope” mean to you?
Hope for me is about progress.
Just a few decades ago, there were no treatments for PKD, and transplant was the only option. Now, there is a drug that can help slow disease progression. One day, I hope for a cure so that the 4th leading cause of kidney transplants can be removed!
Hope is living and being able to look ahead to a future where I can be there for my family and friends—and maybe bring home a World Transplant Games medal.
As we talk about hope, I just want to give the biggest shoutout to my donor-turned-kidney-sister, Maria. She stopped on the Facebook post of a stranger seeking a living donor and thought, that could be me.
Because of her generosity, and the help of organizations like Help Hope Live, we are both here today to tell our story and encourage others.
