Tag Archives: the call

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.

Life On The Heart Transplant Waiting List

Patrick McEntee was diagnosed with cardiomyopathy in 1996. By 2008, he had experienced two strokes and a non-obstructive heart attack. He received an LVAD in 2014 and began fundraising with HelpHOPELive six months after being listed for transplant. In honor of Heart Month, here are Patrick’s observations after a year and a half on the transplant waiting list.

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Pat received an LVAD in 2014


The Physical Impact


I was evaluated for transplant at the Cleveland Clinic in August 2014 and again in September 2014. I was admitted to the hospital immediately upon completion of that second evaluation and was officially listed for transplant that month. My LVAD was put in two days later. It was strange because I had walked – struggling to do so, but still walking on my own – to appointments all over the Clinic’s campus that Friday, and doctors thought I would be listed as a low-priority Level 2 on the waiting list. By Monday, they wouldn’t allow me to get out of bed. I didn’t feel any different, but I went with what they told me. Things escalated very quickly.

The LVAD knocked me for a loop. I didn’t quite know what I was in for. I was sedated for three days after the procedure and I spent a few more days in the ICU. I was in the hospital for a month total. I knew I was going for transplant evaluations, but I really had no idea that I would be there for a month. I thought I’d be returning home the same day. I got the LVAD and it was clear I wasn’t going to be able to continue working and living. I had to apply for disability and prepare for transplant.


Financial Challenges


When you go for a heart transplant evaluation, you don’t just see a transplant coordinator. You also see a cardiologist, a bone doctor, a dentist, a dermatologist and more–and there are expenses associated with each. It’s $30 every time I walk up to a doctor’s desk, plus parking and travel: it’s a 3.5-hour drive to Cleveland and 3.5 hours back home every time I have an appointment. I’m there at least once a month, and I’ve been admitted to the hospital twice during regular appointments since the LVAD was put in to help prepare my body for transplant.

Pat makes a 3.5-hour drive to his transplant center.

Pat faces a 3.5-hour drive to his transplant center


The Role of Fundraising


I’m honestly overwhelmed at the support I’ve been receiving. I’ve had family members, friends, and even friends-of-friends and anonymous donors make significant donations. Most of my fundraising has happened through online sharing and word-of-mouth. The most unnerving thing financially is not really knowing what medications I’ll be on and how much they will cost. Thanks to fundraising, even if I’m looking at $1,000 per month out-of-pocket with prescriptions, I have enough built up that I would be able to cover it for quite a while.


Finding Gratitude


The realization that there are certain things I can’t do is a challenge. Seventy- and 80-year-olds say that, but here I am at 41 saying that myself. But overall, I’m very thankful for the situation that I’m in. I’d love to be completely healthy, obviously, but it is what it is. I’m happy to be able to come and go and do what I want and still have a decent level of independence at this stage.

My wife has been tremendous. She has helped me take it day by day and roll with the changes. She has to be careful now about scheduling her travel for work in case I get ‘the call’ or need her help. It’s a toll that she’s happy to deal with, but it does get in the way of her being able to do what she wants or needs to do at times. For me it’s about staying positive, because I’m surrounded by my wife, my family, my friends and even strangers who are willing to jump in and help out. If you’re a positive person, I think people around you will often respond in that way.

I am grateful for the prayers from thousands of people from all over the country – many people, including strangers, have told me they pray for me daily. It’s truly humbling. My faith has taught me to be grateful for the extra time I have been given in this life, no matter how much more I get. I could easily be dead by now, but I am alive, which I take to mean that God has more for me to learn and accomplish in this life.


Unexpected Benefits


My sister has had similar heart-related issues within the past year. One of the benefits of not being able to work was being able to look out for her and take her to appointments. Beyond that, I’ve started to volunteer with some of the medical centers, talking to patients who are considering an LVAD or have just received one. I explain my experience to them. I’ve really appreciated being able to do that. I see it as almost a ministry, talking to these patients to give them my take on it.


Getting (Too) Comfortable


It’s one thing to say, okay, I’m used to this and this is the new normal. But I have to keep reminding myself that I could get the call at any time. There was a time after the LVAD that I didn’t feel like I was ready to get the call. Today, I still try to imagine what I’ll be doing when I get the call and how I’ll react. Am I going to be able to drop everything and go? If I got the call right now, I’d have to grab a bag and be out the door and tell my wife to meet me up there. It’s a fine line: I want to continue with life and not end up sitting there doing nothing, just waiting.

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Pat describes the “fine line” between preparing for transplant and continuing to live life


The Role Of Humor


Some might see my wife and my sense of humor as a bit morbid, but I find that laughing about our situation is helpful. For Christmas, my wife gave me an anatomically-correct plush heart and said, “Until the real thing comes along.” She also gave me a pair of socks with gold hearts and “heart of gold” stitched on them. Friends on Facebook helped me create a cardioversion playlist with songs like “Electric Avenue,” “Kickstart My Heart,” and “We Got The Beat.” A sense of humor is mandatory in dealing with the unknown of the process of waiting for a transplant.

"Until the real thing comes along..."

“Until the real thing comes along…”


What To Do While You’re Waiting


The important thing is to keep living your life and doing as much as you can. While I’m not working, I wake up and ask, what is my purpose today? Some days my purpose is to sit on the couch and watch TV. But other days I’ll say, today I’m going to do some writing. Today I’m going to read a book. Today I’m going to the grocery store. Whatever it is that you’re able to do, do it.

Get involved in whatever ways you can in life. For example, through volunteering. I found that very rewarding and helpful. Be willing to give of yourself. A lot of people would agree with me that when you give, you receive. It’s nice to tell your story and hear the stories of others.

Lastly, I would add, stay active. It’s not unusual to gain weight with the LVAD, so exercising as much as possible is incredibly important. I know it’s difficult when you are in heart failure but it’s a way to ensure you can be as strong as possible when the call comes.


Follow Patrick’s story or make a donation in his honor on his HelpHOPELive Campaign Page. Have your own transplant story to tell? Reach out to us on Facebook.