You Have the Power to Save a Life

Monday, July 9th

Today we sat down with Elizabeth Murray from Causewave Community Partners, Amy James from the Fingerlakes Recovery Network and Karen and 2 time kidney recipient.

When someone in need receives an organ, not only is their wait over—their new life can begin. Organ donors can save up to eight people, and impact countless more. Join the organ donor registry

Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

Hello thank you again for joining me I can see any writers and this is neighbors in meaning in a very good friends is backing him as Elizabeth you are on a frequently you're inspiring so many people to help with this and I appreciate you taking the time on your busy. Day to come in again we thank you so much thanks for her for being such street champions trash and four. I'm organ donation in general on this initiative which was lions a little over three years ago. Has just hit such an incredible impact around. Our partners at Finger Lakes donor recovery network. Are creative partners at it Myers creative imaging all of them the work that has been done and put together through this program in and messaging. And then you using you're your platform and amplifying the student community I'm we're really seeing some incredible results so. Elizabeth Murray program manager Eric causeway community partners you probably see it firsthand how beautiful this community is. When it comes to hey how we spread the word about sums and absolutely yeah we have. You know we when we started this initiative against three years ago we looked at what why is there of you know what other reasons that people. Are not joining the registry NE XT registry. We knew that over 80% of New Yorkers are strongly in favor of organ donation and yet at this time. It was about 28% of our population that was actually registered. And so we you know New Yorkers have these huge hearts and and everybody. I'm really seem to be in favor of out of it and yet we had a discrepancy in so. As we've gone around the community and when we told these stories. And now you know people have learned more about organ donation. That they're registry numbers have really shown that. A little bit of advocacy can go a huge way and now. And our partners at Finger Lakes are reporting that our region is at about 40%. A registry which is a 12% increase in over in just three years. And again it's akin media asked for. And you're right talking more about it in in educating ourselves about it probably is. Mean who would say no to this when you hear these beautiful stories which we're gonna hear another one today from Karen thank you so much for coming in care and a two time kidney recipient. And member of team Finger Lakes for the transplant games. Which will get more into you and I also want to introduce you to Amy James from the Finger Lakes donor recovery network. Thank you so much can you will coordinate also with all the tasks that you do you also according to transplant team for the finger. It's killed someone I love most about my job is all the collaborations and all the different levels that we get to do that on from. From cause they've all went to the transplant games in America we are seeing such almost culture changed over the past few years. In our region becoming darn Indonesian. Everything from our registry increases which are phenomenal to the number of stories that we have to share publicly. To you know everything out and just families are asking for donation in the hospital more often than ever which is an amazing difference. If he's in at all. And it probably is. North uneducated but. Uneducated like we we never really know what did it mean what does it mean you're gonna let you're gonna take my organ wait a minute why your 'cause we I mean it's always think they'll most horrific scenario it's exactly right and it's. It's that people don't like to think about dying you know that's kind of about Ryan right but the fact is that it's all it's gonna happen all of us. And so hot you know we really encourage people making decisions you know whether it's our nation and our other end of life decisions like just talk about it with your family because. Our goal is to have those conversations Wayne and paints because the worst time you have to think about these things is when your loved one has just passed and you're grieving. So let's just talk about it now in check out Phyllis tell your family is what you want to hear your family's wishes. Register if you're so inclined. You know one person can save up to eight lives through organ donation amount 75 more through tissue donation. Kind of a beautiful thing. In the last time he ran Elizabeth with Nancy she said your co workers she said the same thing let's just get organized let's right. Skidded out on the table have a family discussions and and you feel like. Have to worry about it check out the list I feel planned and prepared that's exactly right and I think you'll find that your film is probably most of part about no English isn't supposed to I'm telling you what it's I think one of the things we've seen that. You know and as we talked to people. We're trying to identify what are the barriers at the reasons why people are not joining the registry. Iman and people will kind of self select 101000 I'll say oh you know I'm too old or I am. I'm over wade arrived and say occur all these different things and and one of things that we like to say is that the registries for everyone yeah and so. You know don't count yourself out and then that icing it when people are skeptical about bad or you know we talked about last time. If people think that their face or their religion is preventing them so we're looking at what are those barriers and how can we address those and provide people with really good salad information. So that they can make well informed decisions so they can hand the conversations. With their families on and then the next step of this which I think is really interesting in and you know like karan's gonna weigh in on this is on to tell the stories of the recipients and to see. How much gag gift of life can can do for a person. When somebody receives the gift of life and you know we talk about scab has going is that. A local example of that who's gone on and become a champion in our community for organ donation. The people who have received this guess have gone on to do amazing incredible things and they take each day as a blessing. And so when we talk about the transplant games I don't think that there is a better example all. Of on people who have embraced this guest. And have garner and and are doing incredible things. Because someone a family a donor was so generous with that gift. And that's what we need to focus on. Inform ourselves like you said that the real facts. And instead of seeking a belt. When I die what's gonna happen it's who can I help live a healthier stronger life in in just tweaking your mindset and caring you are and at. The perfect example of events can we learn a little bit about your story a two time kidney recipient. Certainly. I eight. That's sick in my twenties in my early twenties. It was culture shock for me. You know you go from thinking that you who our invincible yeah invincible to finding out there you hail of 12% kidney function laughed. And that was 36 years ago did you know at any point growing up to now if there was any it okay now nothing. Total shock and go to it was total socket tickle pile. I eventually had to go on dialysis I was and dialysis for two and a half years. And then I got to cop it is the most amazing experience and I've been working ever since you get people to sign organ donor cards. On. It it's just you don't know what it is still happy healthy. You don't know what it it's light I think. Year kept alive by a machine. You have to go to three times a week in and year knowing you have fluid restrictions you have on kinds of restrictions. It's keeping you alive guest at your quality of life is. Not the greatest and not that great especially first when he hurled. Yeah you know early twenties and so I came when I was thirty I had a transplant so right now. My first transplant was from a man living. Person and they'll list a for 26 years so way back up plan. I was on. One of the few that catch transplant. At this point in time because spent and it wasn't as well received dissidents now. And my second one will be ten years old coming on an October and I got that went for my brother so. I a have been alive longer with other people's hearts yeah that I was with. My own at the end it's time we knew where he knew when you're thirty you had your first transplant. At that point intend to be allowed you to connect with the family. Or was it what you could do was you could write a letter to the social worker. And they would deliver it but I never hurt I actually got my first transplant in Pittsburgh. So there was a closer to getting to Pittsburgh in time down. But I wrote several letters they given to the social workers and you hope that somebody well. Well you know bright. GO. But I never got anything. But I know nowadays that. People are more receptive. To meeting their donors and I've known I've seen a lot of stories and it's just so emotional edits. It just gives you goosebumps and you just want to cry don't yoga. I think when things that we you know really focus on is the fact that we've never had a donor family come back with three crafts. So even though you didn't hear back from your donor family your letters meant the world to them who and that continuum of that conversation sometimes there's you don't hear back and sometimes you hear back fifteen years later and you know so it's just it's you know it's beautiful that you're able to write that letter and I know that that meant the world. I could imagine it would help in their healing process. And no data. You know part of your loved one is was still alive tonight that's right and hurt when he did you see 26 years and it's an amazing I'm now Honda. Amazing I really disputing the Johnson of the inning. So now it's a little bit more commonplace. When I first went. Rick I know we're gonna talk about the games a little bit but I went to think first. Ames in 1992. And there were 400 athletes there. And now we're going and I don't know how many athletes monthly games take. So every two years and so times when he sixteen wearing Cleveland and there are 6000 people there. Each with a connection and a story related to donation and transplantation Vienna living recipients being. A deceased donor recipients peeing in a donor family all there at the same messaging in the same mission and the connections animated characters. Exactly amazing and it's one of the experiences in my life or when I went I thought I was a pretty good human being until it's an anchor. That it hasn't I've got some work to do. It's just Alex humbling even. And big enough word for the experience of being sued in these tell me a little bit about these games the people who participate in these games. Are all recipients or is it sure is so they have everybody in. It's connected can come but their actual athletes are the recipients a looming donors so they participate in the athletic events. Then there's also a whole section for donor families and there's donor tributes and and so all of the messaging of donation comes together at the games and the crowd the stands are filled with people I'm you know whether it's a donor family is supporting. Recipients that they don't necessarily know but it's the same story as their family's story of donation and transplant as well some people. Kind of represents stories for people who haven't been able to connect like our donor families will go to many events to support athletes. Mentioning that that's their loved ones yeah gifts you know participating in living on Hamlin led to the fullest sorry. In these games take place we were in this year where we are headed to Salt Lake City in August I get. Under so early. Could I am I I but I don't know you're just setting up a hot skills they have trash heaps of managing skills in so we have about funny fine folks on team Finger Lakes that are traveling to Sully need to participate in the games on different levels in all different transplants I'll definitely have cards on him. You can music lovers million liver pancreas out out that's the first thing when you go to the games to nobody asking your name they ask you what you hail of what do you hear what you hid it in what drug okay now okay and some us sir I mean aren't a transplant games with creativity about organ transplants is and now Amy grazer and I did BOB's area and so we can kind of value of Saddam Hussein was seriously through social media re now suffering really. Starry covering networks FaceBook page will be lighting up the first week in August with pictures and stories and emotions commonly invite everybody to take part in China and on that we'll have some. Great videos though that there will be crying I'm sure there's a flat in Indiana that that happens a lot there but Allen yes please follow this the stories of these amazing brave. Athletes donors living donors donor families. It's an amazing thing. Now if you're not sure if you are and organ donor if you are none of signed out where it would shall we deal in it's even easier now right. Brady absolutely so you know that was one of the things they genocide is wired people registered if people we know that they're supportive so. I'm up until recently the had the system for registering New York State was is a little bit more commerce on. And another states and by we now have this new online registry. And so people are able are real quick way to do it here is to go to Presley fans act or. Okay and that is seat though website that we use for the past lakeside community impact initiative. There's that you know in role here but and people are interacted Susie yeah mine site. On thing likes her recovery network his events so where they're registering people all the time. Am so they have pamphlets that they are able to register at a spot. And also at the DMV and firemen our county DMV has been an incredible. Especially during the last couple of years and really has led to a lot of that increase in our region. And so there are multiple ways now that people can register the with a new online registry with the ability for sixteen and seventeen year olds. I'm when they're so excited to go get their learners permits that's another way that his improves the system which has led to these increased numbers so. It's getting better on the numbers are showing it you know the stories like Karen's story. And you know Amy is going to the games is gonna keep us up to speed and everything that's going and Mike. You know we just encourage people have those conversations. On and one way that that actually for those of last that are still going to be here in August and that chaebol into the games. I'm an Amy can help me an and they spelled we have the every year in April its national donate life month and locally there is that of a race or walker race that's how petitioners had to be. Postponed and rescheduled. Because of the weather. I believe it's August 5 is under study. Yep that's the righteous or river around which is it's was the largest fund raiser for the transplant center at strong. And lead it was the ice that was the one ice storm day in April when the race is supposed to happen and obviously for safety reasons had to be postponed. But there be another local gathering that I'm so while we're insult. City you can come just as you really are can participate in the Rochester river run and and you'll see another whole group of resilience and and people in connection to donation and transplant there are supporting each other and Anemia are still pretty transplant in program that's not what your problems yeah for having me do this. It's. Story little problems. An encouraging sign an organ donor card and thank you so much ACC anybody can use any initiated so much.