Hello and welcome to the gifted life podcast where we have conversations about Oregon, tissue and eye donation. I'm Lori Steele. I'm Joey Boudreau. I'm Sally Juncey.
And we are celebrating yes we are. Donate life, Louisiana registry is yes how old? How old is it? Oh that's very good.
20 years old and we are celebrating with you listening right there right Joe? Yes we are. Today we're gonna have two long-term I mean long-term recipients. What?
Here sharing their story with you. Over 20 years even longer than the registry even though it's the registry's 20th birthday. Blows my mind guys so as you can imagine quite a celebration here on the gifted life and you you right there can help us keep this party going by sharing the podcast. Share, rate, subscribe if you want to subscribe to one of the Apple podcast Google Play or any of your favorite podcast apps.
Yeah on Facebook guys where donate life Louisiana a lot of what we talk about here on the gifted life you can find there and pictures and more description Twitter and Instagram at donate life LA or if Joey and Lori were not clear in these avenues to find us. Yes you can always give us a call 504-648-3477. That's the hotline leave us a message there works like a voicemail and we may use your audio right here on the gifted life because we want to spur those healthy conversations about Oregon tissue and ideonation and you can help us do that as we told you lots to get to here on the podcast let's get going. Here on the gifted life we are all smiles we are celebrating the donate life Louisiana registry is 20 years old guys it's 2.5 million strong we think that's in part to the education we partner with our volunteers we head out into the community and we share our stories we do that here on the gifted life as well so if you're listening you're part of the solution which is amazing right so we're celebrating and the way that we're doing that today is that we're going to inspire you to do even more right some incredible stories coming your way to celebrate the 20 years we decided to take two people who the longest running recipients that we even know of I don't I don't know the whole lot of longer lung recipients in the nation and share those stories with you and so I'd like to introduce Jane Long Jane is a 23 year post double lung recipient so welcome Jane okay so tell us a little bit about why you needed a transplant to begin with and then kind of a little bit about your story.
I'm first with the couple of us which is a genetic disorder that's put mostly the lungs but it also affects the pancreas liver, kidneys and intestines. Lung term issues include difficulties breathing and coughing up mucus as a result of frequent lung infections so I didn't get sick until my teenagers when I turned 15 from my chicken and everything went downhill from there so I was immediately referred to doctors in St. Louis I started my journey with three evaluations and got on the list about my junior year of high school. In high school high school student at that time and I had no idea about anything about transplant except what I'd seen on TV on ABC and the networks about the xenotransplants with animals and things like that so what was your first thought when the doctors introduced the idea of you having a transplant?
Pretty much it came down to a exactly a girl that had a transplant, a heal player and my doctor was very informative and I was raised by the grandparent and we knew eventually we would have a talk but finally we sat down and my doctor put me in a private room and said we need to talk and my grandparent said we need to talk yeah it wasn't very good so I sat down with him and said I want to meet someone to have to be honest with you we're giving you a few more years to live and at the time I was 16 you know I had a boyfriend and I grew up a very simple life in Virginia and the last thing I wanted to hear was that I had to make two choices to live or die at that age and having this grown into my life I really had to sit down grow up, adapt to what I used to and make this decision based off this girl on it. I met her and she had a transplant a year prior and you know the first question and I actually get this question to the state with the many teenagers is near the score you know being a teenage female that was an important question for some reason and she's like you know me show you if you put her a certain single star look and I'm not getting in the back you know being on spawn about it he's like well it's not a you see he's like this is just sort of your journey and I'm like you don't have to long to adapt you don't have to be ready for it and it pains her life actually so good she was in college at U of Siva Virginia and she ended up finishing together a transplant and coach means that a year later she passed away like before my transplant said I had to do it I had to continue my life that's all I knew about her you know I grew up the less I knew the better I think and that's how I go now so you got to see that she was able to live some time with her transplant and come into contact with someone and obviously she was someone who inspired you had to at least ease some of the fears that were there. Absolutely I ever done a few nights the other day at the time in money for you know the doctors gave me survival rate of 78% they only lived for about a year 62 months before about three years 50% months about five years and only 26 months for 10 years so I was wondering if you just operation nine years and he was the only one I knew and leave her not your son and you can cover it because it was so new so it was so experimental at the time. Think about that I'm just in here thinking at 16 that's a lot for you to take in.
It was a lot and I if you see again quick I mean it happened over nine over the curator within a month of one month that's how fast it happened to me so I think a lot of my success in life is I had to make it my new normal to survive and having a technical state has always gotten me through this journey within almost to the day after I graduated with my grandmother unfortunately my grandfather passed away that year and like I'm here where I am ready to go within months I got my grandfather. Wow that's great kind of fast forward if you will you know 20 years later you reach out to your donor's family and I'm wondering what made you decide at that point in time to write to Sandra? I think one of the biggest problems with the transplant reciprocals of my age when I say survival is your body shut down and my choice is not being on my medications I got to throw along my life I'm not going to live it. Well you traveled a lot too didn't you?
I traveled a lot I was calling I was like my first 18 years in life putting you know self-life I called it you know it was never I never had the pleasure of saying I'm gonna have a teacher I have an older brother you know and I grew up with him he always had teacher plans to meet me when I married to meet with him college that was vocabulary that was never introduced to me so one of my people in my club if I make it to the sample I wanted to live this year and most I said some of it was unorthodox I completely partied in college you know I started traveling I started doing things I wanted to do and I used one on and I started thinking to myself all right I'm not living my family I hope this time again a little bit in Australia in 2010 I ended up getting cancer and I'm one of the drugs I was not going on and I got to myself all right I need to reach out to the that's what we second the family I'm going to be at family loss my grandmother so that's the court I wanted to reach out in maybe in another mother in my life this was up to me to do it oh wow well we had the opportunity to talk to Sandra here if you want to hear the other side of the story it's the gifted life episode 56 and I just remember talking to Sandra and the look on her face when she said I heard from this recipient right now she was just so taken back that all these years she never thought she would hear from any of Katrina's recipients and I can tell you she was just thrilled Jane when when we got the letter and I had the good luck or good fortune if you will to call her to let her know that we'd received a letter you probably saved one another you know it was always in the back of my mind you know I actually knew probably more than I knew about her actually I have talked to a lot of other transplants you know it some of them were they've found opinions I'm not contacting their family and I'm not why not you know I see the reasons why I never I was never raised to a negative person and anybody that comes into my life you know I instantly give them a chance I instantly love them and you know that's something I wanted to do because I always thought you know that's a least I could do for maybe someone really wanted you know yeah we see their loved ones or you know that's what kind of started the process I just want to mind that you just need to go do it I've been talking about for five years and you think that's the time for you to do it yeah so Jane here we are you know 23 years later what does your medicine regimen look like these days I'm on one drug and I'm still on an enzyme for subscribers because I guess it's here to happen so that's amazing and I thought you know I try to eat healthy I'm on one drug program which is pretty standard yeah in the cell set I call it of 26 drugs that make other cancer patients I need to take and the enzyme in a multivitamin I mean that's pretty much it that's not what I think every day I mean I get a cold maybe you know get that and work on it and whatever and amount of damage to the animal or for weeks but that's it you know and you know I don't want to feel like a zombie I don't want to feel calm as people I think I'm so heavily drug in this world and I'm never wanting to feel like that I had more reason to be alive than doing drugs up so well Jane we have heard about your life we have heard about your travels from Miss Sandra who just loves you and we have kind of adopted you and following your story as well so we appreciate you taking the time to join us here on the gift of life and we know that there's more to your story 23 years plus pretty incredible thank you Miss Wow incredible stories today guys and here's another how Graham joins us now hey mr. How we certainly appreciate you joining us we are sitting here in awe because a double lung transplant for you when October the 1990s so do some math here how long ago Sally I was I was a senior in high school 27 years 27 years ago how like you were blowing our minds here this is amazing so how are you doing today really well my goodness so let's go back to the beginning was it cystic fibrosis that you were diagnosed with that okay so tell us about life back then well I mean I was diagnosed a career marine officer and he basically just pushed me really hard just quitting was not an option had a pretty normal life growing up I played when league baseball I never let my friends I grew up in Charleston South Carolina actually not pleasant I never let my friends know that I had to be out because I never wanted them to exclude me from anything and that a pretty normal growing up if you will and was able to keep up with my friends and all that other stuff and then college and graduate UNC Wilmington and worked for a couple years after that and that's when I started having more problems growing up with CF that has to be such a challenge this is 27 years on trying to wrap my brain around that right and so did you even know that there was a cure basically that transplants were something that could happen to you at that time it's interesting that joke said and I remember being uh you know if the effing force the answer he just never was he was relentless like you're not gonna have a terrible day and it's kind of done and he said you have to hang one day they're gonna transplant mom and that's amazing telling you guys that we're gonna be living on bars in five years and then permanently and of course I was just like keep bringing the keep going yeah you know I can remember you know in the 80s uh seeing the xenotransplant you know from animals and you know attempts with that I can't and stuff like that exactly so so we're going through that time frame and then here you are your dad saying hey this this transplant's gonna happen to you just you know drive on absolutely so in 90 you were how so you're 28 you finished college you were working but you must have been pretty sick to get to that point so walk us up to that transplant so it decided that it's just a table to the transplant and if you wanted to think it would work basically go down to the outside misery so when you were making that decision had you met any successful lung transplant recipients no so so you were just taking a complete leap of faith with this physician saying you have a 50% chance of dying tomorrow if you do the surgery or you can continue making it off the table and and you took the leap of faith and here you are of course but wow I just didn't think and you say okay yes doc I'll go with it this time so what happened you know then from that point on yeah we all have those and he said hey I'm going to say there's a chance that you know we may be on death but he said don't get too excited because I've got to go out and book and you know they'll crap you for these drive run take you down and you're pretty much that's a goer at the no-go obviously this must have been a good match pretty good everything yeah so uh so what's what's your first memory after that what's interesting that once he calls back does it to go so disease that they kind of you know exactly long just isn't out I don't know if I'm just right I just takes a little longer to do uh because it's longer because it's time-brain they have to kind of go ahead and start that as the lungs are being brought back to you and what if there's an accident you know what if what if I'm awake yep blah blah blah he just looked at me he said stop where that he said it's like great uh that was their motto back then I did check in and ask him another word I did not have one more question for him my faith was in his hands and got hands and I'm not a surgeon and what am I just don't know so do you know anything about your donor I've had your tanks and stuff every year um he apparently the guy was killed in a motor um he was a couple years older than I am and he was which is pretty early hours in a way and that's kind of all I really know I think I maybe heard at some point his family with a dog and that's all I know they must know about donation in some way yes absolutely yeah absolutely and so just from being on this podcast I learned from my mates here and then from those who call in but something in 27 years and the changes in medication and things so what has that been like for you or did I say the status quo it's incredible I'm on my hey my surgery armpit armpit you know you're armpit it's not this music I said well man they got me up of course I was living like a fillet floundering that somebody's banging on your back and hurt like hell and he said not I didn't they didn't do that so I'm thinking maybe they've learned that maybe I doesn't do what I used to do what I used to do without that yeah let me say the strides yeah for 27 years yeah so I know so what have you been able to do with this second chance with this great gift well I've been able to look at again said what this charge you can ever skydive or scuba diverch I could care less about either one of those or perfectly in plain anyway and I had changed I changed careers learning a personal business made partnering my personal firm I just there's nothing I haven't done yeah that's great and it's just been such a gift because before I mean I just it was just towards the end I was given such a gift I'm so you know it was 27 years after I was so much hope absolutely I love that you're a mentor yeah I love that you continue to help us promote organ tissue and i donation to help save more lives we're going to continue to follow your story great things to come yes if you got all right thank you how here on the gifted life we are going to honor a hero that hero's name Elliot Hardy yes this is from his family Elliot was a wonderful person with terrific sense of humor and a large heart everyone who knew him liked him and all of his family and friends loved him immensely Elliot enjoyed his computer video games watching funny movies and most of all writing his motorcycle Elliot completely refinished his motorcycle and was very proud of it sadly he lost his life riding his motorcycle though our family has lost someone precious we have some comfort knowing that our loss has given someone a better life we love you Elliot and now we pause to say thank you Elliot for the gift of life in our question and answer segment today how long can someone live with a transplanted organ that's the question Joe you have an answer I do actually since we just heard a 20 plus year long transplant incredible transplant recipient it generally varies with each life expectancy of the organ and you know lungs are usually a little shorter you've got basically an opening for for infection you know or bugs to come you know every time you take a breath though you've got that organ there that's you know that's that's prone to more problem where vice versa you've got kidneys you know and and livers that obviously don't have that outside contact with the world that don't get infected so often so you'll see oftentimes with kidneys 20 to 30 years even but who knows Laurie to be honest I mean the ones when we're talking 20 to 30 years back you know that was the beginning of of transplant really when it when it became more mainstream was 20 to 30 years ago so you know as we just heard you never know I mean it's it could be we know certainly it's greater than 30 years at this point and and it's a significant length of time and and as we progress with medicine it's getting longer and longer and longer so you never know and every day we learn something new all right you have a question info at lopa.org or you can give us a call oh you sure can yep that's five zero four six four eight three four seven seven they get to life guys another episode in the books I know that's your favorite saying right there Joe but our donate life Louisiana registry 20 years strong and that's for you guys who listen all those volunteers who help us and more to come let's continue to grow that that registry which is 2.5 million strong in Louisiana that's great yeah yeah special thanks to Jane Long and Hal Graham amazing greater than 20 years out right who to thunk it almost 30 years ago you know when they're in in the situations and and struggling with the disease processes and they're given basic three to five years you don't talk about donation back in like you know exactly and here we are 30 years later and Jane being able to speak with well actually reached out to Sandra 20 years and Sandra hadn't heard from any of her daughter's recipients and now they're in contact they got to meet she's very successful in real estate and then Hal is at real estate appraiser very involved with life I mean what inspirational stories do they have huh I love this story gives me my get up and go right and we hope it does that for you too and we want you to go out today and do something that you don't normally do to help us make life happen thank you this is a production of the Louisiana organ procurement agency aloha and gifted life is hosted by laurie steel goi budro and sally gentry our producers are kiersten hines and shalon caraway we are recorded engineered and mixed in our metery luiziana studio by joy burese