Liz Schick, president of the World Transplant Games Federation, shares her deeply personal and truly inspirational story. Diagnosed with a life-threatening liver disease at 35, she found the courage to look for the good in a negative situation, not only recovering from a serious medical condition, but using the second chance life had given her to help other transplant patients of all ages. She discusses her reactions to her first diagnosis, the documentary a friend made of her pre- and post-transplant life, and what it means to her to keep active and do good in the face of adversity. She also shares her experience as a speaker at the EDQM’s 60th anniversary conference in June 2024.
Transcription
Speaker #0
Welcome to EDQM On Air, a podcast on public health brought to you by the European Directorate for the Quality of Medicines and Healthcare of the Council of Europe. We hope you enjoy this episode and we invite you to stay tuned to learn how the EDQM and its stakeholders work together for better health for all.
Speaker #1
On June 11th and 12th,
Speaker #2
2024,
Speaker #1
the EDQM hosted its 60th anniversary conference to celebrate 60 years of protecting public health. We had the honor and privilege of organizing presentations and roundtable discussions featuring a wide range of speakers, from representatives of patient associations to officials from international health organizations like the OECD, the World Health Organization, the European Medicines Agency, and many more. We also had the opportunity to have some of those speakers come on our podcast as guests, where they shared their unique perspectives and insights into the world of public health. This episode features Liz Schick, president of the World Transplant Games Federation, who was kind enough to share her deeply personal and truly inspirational story.
Speaker #2
Coming right up. Thanks for tuning in. Liz, thanks so much for being here. So would you like to start the interview by giving us a short bio of yourself and then we can get into your story?
Speaker #3
How long have you got? Well, my story has been going on for 27 years, if you like, because it was actually 27 years ago that I was told I needed a liver transplant for something I had never heard of. A name of an illness that it took me actually two months to learn, epithelial hemangioendothelioma. And as I said earlier, I... Can't even spill. I have to look it up to write it down. But basically, I had tumours growing around the blood vessels in my liver. And from one day to the next, when I was 35 years old, I was told if I didn't have a liver transplant that I would probably die. At the time, I had an eight-year-old son and a five-year-old daughter, and I thought I was totally fit. So things really changed like in 30 seconds when that was announced to me.
Speaker #2
Would you like to go a bit more into the work that you've done since then? How that event sort of shaped your life afterwards? Because I imagine that such a monumental thing happening to you sort of shifts your perspective and what you consider important in this life. And from what I see you've done and what you've shared with us in this conference as well, you really took that event as a starting point to really go into advocacy. and to working with the organ transplant community. And you've done so many things so far. And at the moment, you're president of the World Transplant Games Federation. So how did your story sort of evolve after that?
Speaker #3
Well, if you're told you have breast cancer, and you need to have a mastectomy, your surgery is put into the surgical agenda and off you go and you have it on that appointed day. If you're told you need an organ transplant, you can't have one. until there's an organ and you don't know when that will be. So you live in total anxiety. Many people live thinking that someone has to die for them to live. I never thought like that. For me, I was living my life, putting my children to bed at a certain time and getting my chores I needed to do done during the day. I was even working full time, but I felt fit and healthy. I was even working out. For some people, they're really, really sick and they have no quality of life whatsoever. It's so varied. We transplant patients come in all shapes and sizes and with different pathologies and different stories that are to evolve. But I was fit and my mum always said to me, turn a minus into a plus. And because I was able to do something, I was immediately in action. A friend of mine... was a documentary maker, just starting out her career. So she made a documentary over several months that finished the documentary, I actually go to the hospital at one point, and it ends with me leaving the hospital. I just had to always feel that I was doing something that made a difference that was necessary that if it didn't help me, it would help someone else and to keep busy. So I just sort of thought, what can I do to help and got to it.
Speaker #2
Right. That's fantastic. And I love, in general, the way humans have this sort of internal strength in them that they can transmute an experience like that into something that pushes them even further to even more productive directions for the good of the world, you know. So I think that's really inspirational.
Speaker #3
It's very interesting to see, actually, what one does have in one's reserve. Because, I mean, if anyone had told me that I was going to be told that I had something that I could die of at the age of 35, I would have thought, oh, my God. I'll roll up in a ball, but I went completely the opposite way. But I don't know if I would have thought I would have been able to do it. But I had to do it because I had to keep occupied.
Speaker #2
Right. And it's life affirming, you know, to look at it that way. Otherwise, you do indeed curl up in a ball.
Speaker #3
Absolutely. And you've got to listen to your mum who tells you always do your best. So that's what I did.
Speaker #2
Right. So in general, public health organisations such as the EDQM. are responsible for creating the framework for transplantation activities so that they operate as safely and efficiently as possible. They also fight against organ trafficking and illicit transplantation procedures. So as a member of the organ transplant community and a recipient of an organ transplant yourself, how do you feel like this work has affected and continues to affect your life and the lives of others?
Speaker #3
I was blown away by everything in this organisation over these two days. There were so many things I knew nothing about, and I thought I did, and so many aspects of the whole. I mean, I knew about the basic things of organ donation, and of course a little more because I do work 40% of the time for Swiss Transplant, which is the Swiss foundation for organ donation. And I've been to many conferences, ESOT, ETCO, TTS, So I know that side, but all the part with the drugs and the safety of the drugs. And I know a bit about organ trafficking. But when you hear Beatrice talk about it, she is such an amazing, inspirational woman, full of knowledge, who really explains things well. And I sit there in awe of her when I listen to her speak. And it was just all the pieces of the puzzle together here. And there is so much work to be done. And we must never just sort of put down our arms and say, okay, that's fine. There is so much work to be done and I feel as someone who benefited from an organ transplant that I must keep fighting, helping and doing things to make things better for the people who are coming up, who are maybe running around the garden today feeling great and then in a year's time they might need an organ transplant. It can happen to anyone.
Speaker #2
Right. So closing off, is there any message you would like to share with patients or potential donors?
Speaker #3
So for donors... More often than not, the donors won't hear my message because they're deceased donors. So my message would be more to their families, from me and from my whole transplant family, because as president of the World Transplant Games Federation, we have over 60 member countries. So I represent a huge global family. And so to the donor families, what can you say? Thank you doesn't sound enough. Really, really thank you from the bottom of our hearts and so much love there for them. And for people waiting for transplants, don't give up. There is life after transplantation. Try and put all the eggs in your basket. Try and keep moving. Try and be whatever your pathology is, as fit as possible to go into that operation because it's a huge thing. And then when you come out the other end. Start moving as quickly as possible. You know, whatever you can do, it can be a gentle walk around the garden. It can be a bike ride. It can be a swim. It can be a sprint triathlon or an Ironman. Whatever you can do, give yourself little possible achievable goals and let those goals get bigger and live every moment because every single moment is precious.
Speaker #2
Thank you, Liz. thank you for your inspirational words. And thanks for being on the podcast with me today. And on behalf of the ADQM, thank you for joining us at our 60th anniversary conference. We were super excited to have you and your talk really enriched the whole experience.
Speaker #3
It was a real pleasure. Thank you.
Speaker #0
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