Hello and welcome to the gift-life podcast where we have conversations about organ tissue and I don't nation You can always find us at the gift life dot org. I'm Maurice deal. I'm Joey Boudreau And I'm Sarah Blakemore coming up on the gift of life today We'll be having conversations and efforts to alleviate fears about becoming a kidney donor And we're gonna talk about when positivity is toxic all that more can be found right here on the gift-life Here we go here on the gift-life podcast. We are so pleased to introduce you to Amanda and Glenna Fry.
Hello ladies Hi, you guys. It's a family affair for you in order to make life happen. We love that We know that your stories are so unique and you each have this pathway and you want to use that to educate others to inspire others That it led you to create a nonprofit. We love that and we want to hear more But we know that it started somewhere so Glenna you want to start us off and and tell us kind of about the background and What led us to where we are today?
Yes, I'd love to so I am a nephrology nurse and back in the 80s I worked at medical college of Ohio in Toledo and I was on the transplant unit where we did at that time I don't know if some of you are older But we had one-on-one nursing care where we would wear masks and gloves and put cover and down and take care of Transplant patients as they came out of surgery and I kind of fell in love with nephrology at that time on the unit and So that was my first experience with working with people with kidney disease I also did hemodialysis three nose years peritoneal dialysis and then the transplants and that's what I loved the most was just watching these people who were very very sick Immediately with a new healthy kidney feel better look better have more energy and have like this new life so over the years working there I Ended up taking care of someone who later became my husband's father. Well, it was always his father But a long story short his family had polycystic kidney disease and so Has the disease his father had it his uncle Let's see his grandmother So his both of his siblings have it so with polycystic kidney disease or PKD each Child has a 50-50 chance of getting the disease if one parent carries the gene So what's been fascinating in his family is every child seems to have gotten it even with those statistics so we ended up getting married and We had two children and that was kind of a tough decision But we ended up deciding even with their risk of getting the disease that that we would still Pet children so that was Amanda and she's got a younger brother Sawyer who's two years younger than her so eventually Bob's kidney function continued to diminish and We're now about in 2002 that he ended up going on dialysis for just a couple months and Was being worked up for a living kidney through my niece So my sister her daughter Melanie decided she wanted to donate her kidney when she was 20 Well to Bob and so they had surgery and everything went well Melanie has since The married and has three children of her own and she's doing great with one kidney. I would have donated except I was not a match and so a Few years later the paired kidney exchange became available and so that's when I decided that I always always save my kidney In case I'm needed a second transplant and we would do the paired exchange Yeah, Glenn mentions the kidney paired exchange and kidney pair donation of course as she got into it in in the early 80s You know, we were just kind of getting into the list the wait list and things and and then kidney pair donation was wasn't even a figment of anyone's imagination It's really just come to fruition as we had spoken about in a previous podcast just in the last really bigger in the last You know a few years 10 12 years where it allows someone who? Who doesn't match with their loved one or someone at the end 10 they can start a chain and and of course it takes The cooperation of multiple transplant centers in many cases and and what it does is you can you know donate your kidney to someone in a Different transplant center and that person has someone that wants to donate But doesn't match and they donate it to someone else and then they keep on until the chain closes and that way it allows people You know just like glenna in those times to be able to get Bob You know that that kidney at a sooner period because she would have been willing to donate but wasn't a match So so that whole chain ties it in so that a donation can take place You know to others and then someone else don't ace the Bob and and of course he gets his his life saving kidney much sooner That's where word years later.
It was probably around 2014 and Amanda ended up being diagnosed with PKD also and The next year Bob was telling me that he said hey, you're getting old Thank you, so are you And he said he said you I don't need a kidney yet, and I know you're saving yours for what I need a second transplant So if you want to donate a kidney you probably should do it sooner rather than later and at that time I was around 57 So I was looking at the 60s even though there's not really an end You know specific age when you can't donate we just knew that you know chances would diminish as I was getting continuing to get older potentially um So I decided to donate to a stranger. I wanted to I was hoping to start a chain And so I ended up going to Cleveland Clinic which is where all of his health care was being done and his transplant had done And part of the workup is a routine mammogram. So I had had that done and it had come back negative But because my mother had um done a high or what had had breast cancer and was considered high risk Um, they wanted me to do an MRI So I talked to the coordinator. We had I had not done any work up yet But we were in the process of getting things scheduled and she goes Yeah, you need to do this MRI just so we're sure that you don't have any problems so it was actually a Saturday when I had the MRI done and they did find a lump and The same day I had an ultrasound and a biopsy and it was confirmed that I had what they called DCIS stage zero So that's spectral carcinoma insitu Which is stage zero, which is not actually two cancer.
There's no cells in the duct and it doesn't spread But they still use this terminology and um some progress Intern into cancer and others don't so typically they treat everyone the same and and want the treatment which they recommended for me was Uh to have a lumpectomy that area removed to have radiation And then later go on an anti hormone pill for my care So the first phone call I made when I got the diagnosis was to my coordinator at Cleveland Clinic saying that I And this was Monday. So I had the biopsy on Saturday. This is Monday. I got the results I called my coordinator and I said I can't come tomorrow, but the workup was literally Tuesday and Wednesday that week I said I can't come I was crying.
I said and that wasn't about the cancer It was because I couldn't donate my kidney and I knew from experience from being a transplant nurse that you had to wait five years after a cancer diagnosis until Um, you could proceed with donation or even forgetting a kidney if that's what you were trying to do So we canceled two days of workup. Um, I went locally and they gave me those options that I discussed radiation Surgery and the pills and I said no, I I want a second opinion I don't think I need all of that treatment for what isn't even considered true cancer So I went to Cleveland Clinic for the second opinion And talked to an oncologist to specialized in breast cancer and basically she said, you know what you can do whatever you want You can do everything you can do one or any options, you know that were presented Um, but she honestly didn't think I needed to do the radiation and medications if those abnormal cells were removed and the margins were clean So I knew um, I wanted to get that done as quickly as possible So I could start my five-year clock to be able to donate again And that was my I made every decision based on when can I donate my kidney? um We were at a KKD polycystic kidney disease conference in florida at disney that summer And I talked they had a speaker that was from male clinic a transplant surgeon And after his lecture, I went up to him and I said, you know, I've heard that a wife had given her husband a kidney after she had a diagnosis of DCIS stage zero And I said would you ever consider looking at my results and consider that situation? Um, if I came to male and he's like, yeah, we can look at your, you know, case, um, send me your information So I had some hope that maybe I could actually donate sooner than five years just based on that prior story and what he said Uh, since I'm in Ohio and mayo is a distance away I decided to go back to Cleveland and see if they would reconsider my case and not just use the policy as a standard But to actually look at my information my health Talk to their doctor who said you really don't have cancer.
This is You know not active cancer cells And so they said, yeah, we'll we'll let our committee take a look at your information And so eventually after some meetings and they had contacted the oncologist and they had provided I think she provided an article for them And they ended up saying in in the fall that I could proceed with workup that I did not have to wait five years So I was ecstatic with like, yes, I'm not without some work, but and I knew this was extremely unusual that You know anyone would would push the envelope like this Um, but try and donate so I was so determined. I just felt so much like this was my path And that I was meant to donate in this lifetime and you know everything I could do under my control. I was going to make that happen Uh, so I was um, I think officially okay to November Um to be active on the list. I decided to do um, I had already decided non directed so I didn't know who I was donating to Um, I didn't really have control over starting a chain or not Um, but I also was introduced to something called an advanced donation option And so I uh chose to get a voucher for my husband and amanda So that if I donate to a stranger now They have a voucher and only one of them will get to use it Um, but if one of them needs a kidney later they can turn in this voucher go into the national kidney registry Today match for a kidney later So I felt like that was a really big win win for everyone someone got help now And one of my loved ones still gets helped later.
Okay, such an incredible story from start to finish amanda I'm going to bring you into the conversation. I mean, I know what you were made of from listening to that persistence. You're Kind of a tarian you're kind. Oh my gosh, and then you add some creativity from you some design skills counselor background and boom This is crazy.
So, uh, man I want to talk to you about um your life we heard from glenus perspective But if you could kind of talk about you kind of watching all this growing up Is that what kind of prompted you to go into the counselor realm and then talk about the birth of this non-profit and wanting to help others? I love that. Yeah, so my story. I would say probably actually starts, uh with cancer um when I was about two or three I was actually diagnosed with acute lymphoblastic leukemia and I went to normal chemo route I literally did everything to a t and was in remission by age six and so I grew up in hospitals Which to me was normal like i'm a marriage and family therapist as a family therapist I'll tell you whatever you present to kids as normal They think is normal and so I thought it was normal to see Sam in the hospital for christmas Um, I thought it was normal to have nurses as great friends and like this playroom down the hall from my room I mean, I don't have that many bad memories from the cancer experience But obviously that changes your life and how you view the world and it's not a normal childhood as I found out later as I got older and could comprehend what was going on And so then to transition I was about 11 when my dad got on dialysis and he did this transplant and At that stage in life I'm barely starting to comprehend that like cancer wasn't normal and then you throw this in and my dad sick and he needs help And one of my cousins is donating her kidney to him and it was just still normal I mean like hospitals have been normal my whole life and I was not scared for him I really wasn't worried.
I actually went to Cleveland clinic for her and affecting me and his and affecting me and transplant And I was just kind of like hanging out with the adults and part of the team And my brother, Sawyer, who's a couple years younger He was young enough so that they had him stay at home at a friend's house for that week So I felt like I was inside the club just being old enough to kind of understand and to not be too worried about it Um So again normal to be around all of that stuff in my head, which was so silly to think I was like Hey, I already pulled this random cancer card. There's no way I'll have pk Like that would be really bad luck to have both of these diseases in one lifetime. So I had been walking through life thinking I'm probably not gonna have pk. I'm really healthy.
I'm asymptomatic. Um, I already had cancer So when I find out I don't have pk. I'm gonna donate my kidney to someone and in my head It did not have to be anyone in particular. It could have been a stranger Could have been my dad if he needed a second kidney later I was just like I don't need both of these and again at a really young age I saw someone give one away and there'd be no issues with it So very much normalized the idea of living kidney donation for me Uh, you know so fast forward to 2014 and in grad school I eventually got an infected cyst which led to diagnosing my polycystic kidney disease through ultrasound And I very vividly remember that I was the most upset about that diagnosis because now I couldn't donate my kidney to someone I had watched a parent grow up with pk.
D. I knew that it would be okay. I knew that I would be okay Um, you know, I got the bad luck of getting it But even if you have pk. D only 50 percent and up in kidney failure and need a transplant or dialysis So I was like, I've been healthy in every other way.
I know about it at a young age I can manage it and you know with taking some control Let's just you know, hope I land on that. I don't need a transplant side So that's my current game plan because I will be lucky enough to not need a transplant So I've never really been worried about me or my health in like a very big or scared way I'm also just low on fear in general But it was just really really upsetting that now I can't help someone else in this way and because I had had a blood cancer I can't donate my blood. I can't do a bone marrow transplant with pk. D.
I also could not donate liver Uh, sometimes I was a kid. I actually just I go in cycles of growing my hair out really long and then chopping it off and donating it Because that's the only thing that I can give because of all of my health stuff So that was the hardest part of getting that diagnosis and still is for me Um, which is never anyone else everyone else that they're like, oh my gosh, but you're helping or you're gonna be okay And I'll be fine. I'm okay. Uh, but there are there are people right now who aren't okay And it would just be so great to be able to help them in a bigger way Well, so after mom donated her kidney, we were kind of sitting around thinking now what like she has the same so, you know She could donate 100 kidneys.
She would uh, there's zero regret Her regret is she wanted to donate to everyone not just one person And uh, you know, she tells me over and over again That was the hardest part is that when you say yes to one person you say no to everyone else And so we wanted to help more people and through her going through the living donation process It became very clear That no one's really talking about it unless you have a family member affected by kidney disease or who has donated or you know Somebody you're close circle with one of those two things No one's talking to the public about donating a kidney while you're alive the process itself We found out through her going through it is not very user friendly I think we don't have twice as many problems if she wasn't already an apology nurse and kind of do what to expect I'm sitting here on the counselor side watching thinking this is not accessible. This is not easy This requires a lot of problem-solving skills and networking and knowing how to advocate for yourself And those are not things that we teach especially depending on your class or your socioeconomic status It's just not made for everyone Um side you asked about being a counselor has nothing to do with all the kidneys tough actually Um, I don't know when I was in high school and you're going through that phase of boyfriends real friends and all the drama and all the gossip and all the fighting I would be watching on the sidelines thinking can you guys just talk to each other and that we're a lot of problems I'm a natural born therapist And so I'm actually a marriage and family therapist and my primary specialization is working with couples I very specifically wanted nothing to do with hospitals because I had had enough of them by the time I was an adult Um, I don't mind them. They're fine But I did not want my job to be in a hospital And so I work in private practice and I really don't work with chronic illness or cancer or diseases I I just work with couples on how do you make your guys relationship better and happier and more fulfilling? And I love every second of it But it's really totally separate from all this stuff Which is so funny because glenn is like her whole life is kidneys and for me that was just not the dice I rolled Um, so yeah, my job is very separate from this nonprofit.
I feel like I need to have coffee with you guys so your awesomeness can transfer to me I love it You guys are amazing. I love your story and a lot that you just are fighting for others Um, and we do want to tell you we we think that you might find this interesting in our listeners too on episode 87 of the gifted life If you have time check it out But jennifer david had phoned in and she said that she was thinking I'd like to do something nice I'd like to donate a kidney. She was looking for information. She was struggling to find information She happened upon our podcast and once she learned some of the facts, uh, just folks have in conversation the normalcy of it She kind of figured out, um, you know that the method uh to be able to go about it She went through with it and she helped another anonymous stranger just because it was the right thing to do We think it's great.
So you guys are nonprofit you can find it my kdc.org kidney donor conversations We think you're right on target guys. So tell us a little bit about the mission and what you're hoping for it And a little bit about it. So we provide education and support about living kidney donation Uh, as an apology nurse, I always thought it was odd that our local life connection of a hio Only talked about the seastonation and it always kind of confused me like where's the group for living donation? But I just remember thinking that over the years and so that's what this feels like to me is Part of that other half of we forgot great great number working across the united states about the seastoners In our message is you can be a deceased donor register on your license and be a living kidney donor You can do both.
It's not an either or it's an an and and so the more we talk to the general public about living donation It's not in a pressured way. It's in an educational way and we don't know who who will be you know Tapped on the shoulder to say wow. I think maybe I want to donate my kidney And so our our goal is just to have conversations and the people will figure it out themselves Um, and so that's really our mission now is how do we educate them on the options and the risks and the benefits And if no one else is going to talk about them, we will And one of my goals with this nonprofit, um, I grew up with this huge medical family And I understand pretty well the medical terminology and how the healthcare system works and all of that But like my clients at my counseling job, they don't they don't understand it and the terminology is confusing And it's not made for a lay person to understand it's not made for a high school grad to understand And so one of my huge goals with this nonprofit is to make this super accessible to everyone Not just people of a certain status or education level, but anyone who wants to donate You know, most people have a good kidney our bodies don't discriminate in the ways that we need a society and culture might And so how do we make this easy for people? How do we really support them?
How do we encourage them if they're interested in a way that the healthcare system isn't necessarily designed to do And I also hope for my mom we have many many conversations when we're putting together videos or education or handouts Well, how can we make this easier? Okay, that's easier for you, but how could it be easier for anyone on the street who doesn't know what a Defrologist is and that's an interesting challenge that we have that we are constantly taking other people's info and translating it to be easier and easier and more simple And more fun and just more accessible at large guys We could sit and talk to you guys all day Obviously you've walked the walk you've talked the talk and now you want to help others and we just love that So glina and amanda thank you for taking the time here on the gifted life We love to have you back. We know that you're doing amazing things with kidney donor conversations If you guys were moved or inspired to register you can do that at register me dot org to sign up as a Organ tissue and eye donor and if you want to find out more you want to connect with these ladies You can do that at my kdc.org. That's m y my kdc.org On the gifted life we take a moment for mental health.
Yeah, lori today I'll have to tell you I'm very confused about it. Usually I have a good idea Today's topic is toxic positivity. Oh, no, I'm curious now Sarah what you got So yeah, so what we're gonna talk about today is toxic positivity Which I know is confusing but essentially what it is is when you are toxically positive It means you're being overly excessive and ineffective of a happy or optimistic situation So you're denying minimizing and invalidating the genuine human emotional experience. My eyes are really big right now.
Yeah I want an example because I may be falling into this. Yes, yes I will because this because this is something I do feel very passionately about as a mental health professional I think a lot of times people's answers to you are to just be positive, which isn't very helpful It's when you're being you're denying all of your negative emotions. It's okay to have negative emotions It's okay to struggle. The answer isn't just be positive about it and good things will happen Sometimes that's not helpful in a real life situation, you know Um, so when you deny your negative experiences, it makes it invalidates them So like when when your ex like gets engaged or something like that and then you're on Facebook say yeah That's a little bit more.
Is that what you're talking about? Yeah, that's what I'm saying. Yes, that's not a genuine human experience or emotion So when you are positive when you're toxic in your positivity, you're hiding what you really feel you're dismissing your emotions You feel guilty for your negative emotions And you show either so you lose an opportunity to show others a real and different experience So when you're overly positive to the point where you're not fully experiencing your feelings and your thoughts and your emotions It can be toxic because you're not going through that full experience of what it is to be human I think on social media too Keep popping in my brain like keeping up with the Jones is like other posting No, look what we're doing over here and we've got crawfish, you know, and so you Especially during the pandemic because really what else is there to do Um, so I can see how that would kind of work in the longer it goes on Right, well, it's not very helpful to just be positive all the time It's okay to go through and it's actually a really empowering thing when you go through your negative feelings your negative emotions Um, and it makes you who you are. So I know a lot of times people will say everything happens for a reason A really good counterpoint to that is to say it's okay to feel bad sometimes because that's the truth, right?
Yeah, another thing a lot of times people will say failure is not an option Counter that instead with failure as part of growth. Yeah, um, any of those written down zero Yeah Sarah knows, you know from from our relationship, you know over time, you know with with what we do I'm constantly looking for silver linings And and I may I feel like I may fall into this from time to time because to me every situation I I I try to bury the whatever that negativity is and just focus. Okay. Yes, that was thrown our way But it's you know this this this this and this will great, you know, even the pandemic You know, there's so many positive things that have come you know out of it, you know, you know, outside of all obviously all the negative things You know, there's so many different things that we can take as change agents moving forward And and I fall into this all the time that sometimes I probably come across certainly Uh, as though I would be a little bit on the toxic side But I think that's okay as long as when you know a lot of times too in our field like we see really hard things and we see Our families going through the worst situations of their lives and so we can kind of reflect that on our own lives a lot and say, you know It could be worse, which is true, but it's okay And sometimes we do experience bad things that we need support So recognizing that and recognizing that it's okay when bad things happen and it's okay that it could be worse How can we get support and how can we get support?
It's it's you know, this whole conversation really is about just being positive isn't the only answer It's good and positivity is good, but We need to have the full human experience and recognize in others and in ourselves that it's not the only answer Right. It's validating all emotions as opposed to just forcing Sometimes a kind of fake positive emotion. That's exactly right. It's when it's in genuine and when it's Ignoring everything else in your life.
I have a friend. We've been friends since the first grade and so we both have a lot of children We both work and serve a couple of months. We just have a downtime. My house is not clean I have no idea what I'm gonna be the kids and she said saying here makes me feel better, right?
This is true kind of vent to it. This is what we've been going through how are you dealing with that and so just having that other person going through the same thing Being real that helps Yeah, yeah, absolutely. All right. Any other tips, mistera?
No, just you know be your authentic self and when you are genuine and authentic with yourself other people respond to it and they want to help you and support you And so I think when we're overly positive when we're toxically positive We can at times eliminate people wanting to help us and people wanting to support us So just be yourself and be truthful with your experiences. I like that. Maybe you have a topic you want mistera to cover info at the giftedlife.org We love to hear from you In every episode of the gifted life podcast we honor a hero today We learn about our hero Timothy Thompson from his family Although we miss him dearly our heart smile because he has given the gift of life Even though he was only 33 years old he touched many lives with his beautiful blue eyes Infectious smile and good old-fashioned southern manners Tim lived life to the fullest and had a very colorful past full of stories and memories as an automobile technician He proudly worked alongside his older brother at a car dealership and loved to fish on his days off If Tim could talk to us now, he would say that he is proud of being able to help others He truly is our hero and now we pause and say thank you to Timothy for the gift of life And our question and answer segment where do I go if I'd like to donate a kidney to someone in need It does not need to be someone I know because living donation does not go through the organ procurement organization such as lopa You would have to go to your local transplant center If you don't know who that is you can certainly check with your primary care physician Uh, and if he or she doesn't uh can't give you some direction there you can always go to you knows.org that's unos That o-r-g and there's a tab that says a transplant and under that It's living donation and on in there you can find pretty much everything you need to know to get started to become a living donor All right, great question great answer. Maybe you have a question for our gift-of-life podcast team We'd love to hear from you can give us a call 504-648-3477 And that'll do it for episode 137 of the get-to-life.
Yes, thanks to miss glennifry and her daughter Amanda for coming on and sharing and inspiring their Persistence, I mean it was so impressive to listen to all the things that that they have both gone through in their life And still come out swinging still come out trying to do more it's amazing great guests great story We certainly appreciate their time. Hopefully that inspired you to take action Are you registered to be an organ tissue and eye donor? We hope so if not you can do that now register me.org and for more information go to our website the gifted life org You can listen to our podcast there or on apple google spotify or iHeartRadio podcasts If you do listen on apple podcasts go ahead and leave us a five star rating and subscribe so that others can find our podcast And of course if you're on social media Go ahead and like our page on facebook the gifted life podcast and follow us on both twitter and instagram at gifted life pod Thank you for listening. Thank you for sticking with us go out and do something you would normally do to help us make life happen It matters have a good one This is a production of lopa or the Louisiana organ procurement agency the gifted life is hosted by lory steel joey bujro and sarah blakemore Our executive producer is kiersten heis producer is shalon caraway in turn is rebecca rannam and we are recorded engineered and mixed in our cubbington Louisiana studio by choy parese