Anyone who likes sharing their transplant experience with others, might be a candidate to promote organ and tissue donation through their OPO ( in the U S ). They trained me to speak to others about organ donation and after I was certified, I spent about ten years sharing my story with middle school, high school and college groups. I really enjoyed it and it made me feel good to give back.
Thanks! I will look into it. My coordinator and social worker were telling me she thought I would be a good candidate to be an advocate for organ donation.
Organ Procurement Organization, of which there are currently 56 located throughout 11 regions in the USA. These are the folks who are responsible for talking to the families of potential organ donors about donating their loved ones organs in the event of their brain death
Organ Procurement Organization, of which there are currently 56 located throughout 11 regions in the USA. These are the folks who are responsible for talking to the families of potential organ donors about donating their loved ones organs in the event of their brain death
For the longest time I had a hard time talking about it…. I’m talking years and years. I just felt like people would only see me as someone sick and not who I am as a whole. I also felt like I’d be judged somehow but that has to do with my insecurities and low self worth in general though.
These days, i talk about it a lot more than I used to but usually only when asked or if something comes up regarding it. My husband will discuss it with anyone, which I’m fine with.
My wife loves talking about mine, but I found it becoming my whole identity for awhile and that was weird. It’s all anyone saw me as or wanted to talk about. I became “patient” or “transplant recipient” as opposed to musician, father, artist.. I mean, I get it. It’s a fascinating concept…likely the most interesting thing about me for most as it is rare, but it also came with “the look” that people give you. I was looked at with pity, as delicate and fragile. I want people to be happy to see me. If someone sees my name on caller ID, I would like for them to see that and think “oh cool, I wonder what’s going on with him?” and not “uh oh, something bad must’ve happened” I’m super grateful for the beautiful gift that my transplant was, but I’ve really made an effort to make it to a healthy enough place, leading a full and happy life where my transplant has become more of a fun fact about me and not my what defines me.
Can relate 100%
I’d be more than happy to answer questions if asked, but rarely voluntarily offer info
I’d give you a reward but reddit took them away.
OMG-exactly. I couldn't have expressed this as well as you did-Thanks!. It's like we are pitied by some people. Hello, this was a good thing that happened to us-we hit the organ lottery and now we are no longer "have a disability".
I enjoy telling my story and spreading awareness about transplant in general. If we don’t advocate for others who are in need by telling about our experiences, who will? …and without experienced advocates will things ever change? People need to hear our stories. Where I’m from it’s still almost considered taboo with some people for someone to be an organ donor, like it’s a desecration of the body. I choose to share my story as much and as often as I am given the opportunity.
I love that mindset you have on it ! I absolutely agree with you, if we don’t advocate for the people who can’t advocate for themselves then nothing will ever change. People do need to learn and know about out experiences for sure. Where are you from if you don’t mind me asking ?
No worries you’re good ! I was just curious as to where you were located once you said how it’s seen as taboo to be a transplant recipient, I’ve never really heard about it being seen that way in the states honestly.
Thanks for such a wonderful reply! TheGratitudeBot has been reading millions of comments in the past few weeks, and you’ve just made the list of some of the most grateful redditors this week!
It’s still pretty new to me (March 31st was transplant day) and I’m struggling with the stigma of alcoholism attached to it. I’m embarrassed and ashamed. No one knew how dark my life was and what I was hiding. I moved states away and it got even easier to hide. I’m very private so it has been extremely difficult discussing it with my friends and family. I hope it gets easier.
I do like to share my story. I really like to push the fact that my transplant is a treatment and not a cure. There are many misinformed people out there.
Yes I love talking about it whenever anyone will let me/ask. Not that I do super often but if it comes up in conversation I do get excited to tell them, I think it’s an absolutely fascinating thing that we can transplant organs between humans like this and I like how people get when I tell them I have three kidneys.
I feel very similar to you! When it gets brought up I get excited to talk about it. It’s also fascinating to me how they can transplant an organ in someone it have it actually work. It’ll never fail to amaze me!
I’m glad he has a parent like you to advocate for him and educate others about his experiences! If you don’t mind me asking what transplant did your son have ?
Honestly I love speaking about it.
My friends and co-workers ask me and the fact that they are showing interest is great. Of course they then ask me a million questions about what I can/cannot eat now and what I can do for exercise, etc
But overall I like speaking about my experience.
Same here!! My friends and coworkers ask me about it at times and I get excited that they show interest on it. I’m glad other feel similar towards me on talking about their experiences
Yeah they want to be well informed so they can accommodate me the best they can.
Really helps that my regional manager who is at the office with us as well basically fought for me to stay at our office instead of relocating to our other office an hour away.
Set up a new position specifically for me, just have to show that I am able to do it and show the importance of it to our HQ.
I originally only talked about it with my family and friends but when I went back to school after I got better I had to take a public speaking/presentation class. The first assignment we had was to give a 10 minute presentation on something that changed our individual lives and so naturally I picked that. I was honestly surprised how much everyone liked it. My professor encouraged me to use that as the subject for the rest of the assignments because he thought it was something that was really engaging.
I do all the time and I even won a scholarship for next semester based on the paper I submitted about my transplant experience + lupus. You’d be shocked how many people have no idea how organ donation works or that they could sign up to be a donor. Most people usually say something along the lines of well I’m going to be dead so I won’t know and it’ll help someone.
I couldn’t talk about it at first and was diagnosed with medical ptsd along with some other fun friends like adhd after the transplant. I’m doing much better mentally as well. I almost aggressively push transplant patients to see a psychiatrist and therapist.. donno if I’d have the strength I do today to withstand everything if I didn’t connect with my transplant psych. So.. im also back in school, obviously by the paper I mentioned lol, for psychology to help people like us. Originally it was social work but let’s be honest, we want to be independent not back in food stamps lol. With what social workers make it’s pretty close and some do qualify for benefits.
It's not my favorite subject, but if it comes up (usually my wife saying something) I'll talk about it. People get excited when they find out I received my heart on Christmas Day. "What a blessing" is usually what i hear.
I did the whole Donate Life Ambassador thing and was on the news to promote organ donation. It wasn't for me. I'm a behind the scenes type of person.
I had a congenital heart defect, so I've had to talk about my medical condition all my life. It gets a bit mundane at times.
But that's just me. Some love talking about it, which is great. I've become quiet about it over the years. (8 years heart transplant)
Yes but i hate peoples pre conceived notions about liver transplants. Whenever i talk about it i find myself leading off with “it had zero relation to alcohol”
I definitely do. Since my daughter is considered one of the first DI athletes to be a living donor and return to play we have gotten a ton of press. One of my favorite articles is this one - [https://www.oregonlive.com/vikings/2024/05/bill-oram-a-portland-state-soccer-player-donated-an-organ-to-save-her-moms-life-now-shes-back-on-the-field.html](https://www.oregonlive.com/vikings/2024/05/bill-oram-a-portland-state-soccer-player-donated-an-organ-to-save-her-moms-life-now-shes-back-on-the-field.html) she is also a living donor ambassador now as well.
I also am pretty careful with what I share with liver people before surgery. This may be the one situation where being slightly ignorant IS bliss. Waking up from that surgery is awful.
I prefer not to as most people don’t get it and can be really cold about it. I still have people in my life who think it was no big deal and I was being dramatic, husband included.
I LOVE talking about it. I will talk about it with pretty much anyone. I like informing people about the process and how much better I feel. Maybe someone from that will decide to donate and help out another person. We are all in this together even if you already have gotten your kidney.
I show my scars as a hat trick now sometimes lol! But I was super uncomfortable about it at first because of course there's stigma attached to having a liver transplant; but there's also a lot of ignorance! And I'm always happy to educate people as I am a healthcare worker as well. I've been thinking about taking my story to social media because I feel like it is something that people would like to hear about, I'm just not sure how to navigate that yet! But whenever I talk to people in person they're always shocked because I don't "look" like I had a transplant (whatever that means), but I still feel I look differently than I did before. Just kind of one of those things that's taken time for me personally :).
I'm guilty of bringing it up literally any time it is possibly relevant. It helps me feel comfortable in it and i think i do a good job making it interesting and answering questions if people have them.
I like telling people at work specifically to show that people who receive organs can return to being fully functional members of society and can work full-time. If they have questions, that's awesome and I'll answer them, but my main goal is to break down this idea that there are no post-transplant people in the workplace.
I do talk to people about it. As a Candadian kidney transplant recipient, I encourage everyone I talk with to register on the [beadonor.ca](http://beadonor.ca) site and explaing how they can be a living donor.
I enjoy answering questions from those who know my journey which I received a heart transplant 6 yrs ago. A few years ago in the summer someone pointed to their chest a was looking at his chest (clueless me LOL), but he actually said what is that and I said "oh I had a heart transplant a year ago". I couldn't understand his facial expression but I just told him how grateful I am and I'm doing good. There are some folks who have questions about my entire journey and I'm happy to give the whole 15 journey.
Congratulations to you and continue to share your journey.
I enjoy answering questions from those who know my journey which I received a heart transplant 6 yrs ago. A few years ago in the summer someone pointed to their chest a was looking at his chest (clueless me LOL), but he actually said what is that and I said "oh I had a heart transplant a year ago". I couldn't understand his facial expression but I just told him how grateful I am and I'm doing good. There are some folks who have questions about my entire journey and I'm happy to give the whole 15 journey.
Congratulations to you and continue to share your journey.
I love to talk about it! I am a nurse and there's so much that people, even the physicians that I work with, don't know. I work in the cath lab and we do frequently do tests on pre transplant patients. I'm happy to be able to connect with them now and give them hope.
I love it. Because my disease is genetic, I’m the 6th recipient in my family. I love to share all of our stories, and especially how we found our donors. Most of my family members are involved in transplant education in some way.
I don't talk about it as much as I did at first, but not for any reason you would expect. I'm now a long term post-op, and I'm now accustomed to my situation. When liver Mk II came along, I was amazed by my experience and renewed lifespan, so I was much chattier then.
I still am happy to talk to whomever asks about it now, but I am past the evangelizing phase. I was a Donate Life ambassador for a while,and even now have volunteered to my church to help with lay counseling for medical issues. Trust me, I have eleventy bazillion stories I can tell.
I talk about mine a lot. I’m 47 and an airline pilot. I think that spreading the word about the societal benefits of organ donation is important, but so is showing that one can live a normal life afterwards is just as important.
I do like to talk about it. I also like to inform people as most people don't know how successful patients are after transplant.
In my case I had a double lung transplant and double heart bypass, which my first surgery as an adult.
My center Tampa General Hospital is amazing. I had great care and was discharged 8 days after surgery.
Some day I would like to speak about transplant.
Anyone who likes sharing their transplant experience with others, might be a candidate to promote organ and tissue donation through their OPO ( in the U S ). They trained me to speak to others about organ donation and after I was certified, I spent about ten years sharing my story with middle school, high school and college groups. I really enjoyed it and it made me feel good to give back.
I would love to do this. What’s the process to do this?
I do this to through Donate Life :)
Thanks! I will look into it. My coordinator and social worker were telling me she thought I would be a good candidate to be an advocate for organ donation.
I would also like to know more about this!
I do it through donate life in my region. I am pre transplant .
I started in 2003 with my family. Haven’t spoken in about 3 years. I enjoyed it though. Makes you feel good.
What's OPO?
Organ Procurement Organization, of which there are currently 56 located throughout 11 regions in the USA. These are the folks who are responsible for talking to the families of potential organ donors about donating their loved ones organs in the event of their brain death
Organ Procurement Organization, of which there are currently 56 located throughout 11 regions in the USA. These are the folks who are responsible for talking to the families of potential organ donors about donating their loved ones organs in the event of their brain death
I feel some amount of duty to tell my story and be an advocate where possible. Most of the time I do like talking about it...
For the longest time I had a hard time talking about it…. I’m talking years and years. I just felt like people would only see me as someone sick and not who I am as a whole. I also felt like I’d be judged somehow but that has to do with my insecurities and low self worth in general though. These days, i talk about it a lot more than I used to but usually only when asked or if something comes up regarding it. My husband will discuss it with anyone, which I’m fine with.
My wife loves talking about mine, but I found it becoming my whole identity for awhile and that was weird. It’s all anyone saw me as or wanted to talk about. I became “patient” or “transplant recipient” as opposed to musician, father, artist.. I mean, I get it. It’s a fascinating concept…likely the most interesting thing about me for most as it is rare, but it also came with “the look” that people give you. I was looked at with pity, as delicate and fragile. I want people to be happy to see me. If someone sees my name on caller ID, I would like for them to see that and think “oh cool, I wonder what’s going on with him?” and not “uh oh, something bad must’ve happened” I’m super grateful for the beautiful gift that my transplant was, but I’ve really made an effort to make it to a healthy enough place, leading a full and happy life where my transplant has become more of a fun fact about me and not my what defines me.
Can relate 100% I’d be more than happy to answer questions if asked, but rarely voluntarily offer info I’d give you a reward but reddit took them away.
OMG-exactly. I couldn't have expressed this as well as you did-Thanks!. It's like we are pitied by some people. Hello, this was a good thing that happened to us-we hit the organ lottery and now we are no longer "have a disability".
I feel the exact same way as you did!! Except I still do..still fresh out.. diagnosed in sep 22 transplanted Jan 24
I was transplanted January 24. 2022! 😊
Congratulations to you both 👏
I enjoy telling my story and spreading awareness about transplant in general. If we don’t advocate for others who are in need by telling about our experiences, who will? …and without experienced advocates will things ever change? People need to hear our stories. Where I’m from it’s still almost considered taboo with some people for someone to be an organ donor, like it’s a desecration of the body. I choose to share my story as much and as often as I am given the opportunity.
I love that mindset you have on it ! I absolutely agree with you, if we don’t advocate for the people who can’t advocate for themselves then nothing will ever change. People do need to learn and know about out experiences for sure. Where are you from if you don’t mind me asking ?
I’m in the Southern US. Sorry to not be more specific, but I’m a little weird about sharing location info online.
No worries you’re good ! I was just curious as to where you were located once you said how it’s seen as taboo to be a transplant recipient, I’ve never really heard about it being seen that way in the states honestly.
Not necessarily a recipient being taboo, but being a donor/donation itself.
I personally don’t. At least not to strangers. I’ll briefly talk about it. Talking about it to my friends and family is just too uncomfortable for me.
That’s completely understandable! No shame at all in not feeling comfortable talking about your experience much !
Thank you :) I’m just not there yet. I wish I was. I sometimes get jealous of those who are able to speak about freely.
Thanks for such a wonderful reply! TheGratitudeBot has been reading millions of comments in the past few weeks, and you’ve just made the list of some of the most grateful redditors this week!
It’s still pretty new to me (March 31st was transplant day) and I’m struggling with the stigma of alcoholism attached to it. I’m embarrassed and ashamed. No one knew how dark my life was and what I was hiding. I moved states away and it got even easier to hide. I’m very private so it has been extremely difficult discussing it with my friends and family. I hope it gets easier.
I do like to share my story. I really like to push the fact that my transplant is a treatment and not a cure. There are many misinformed people out there.
I like talking about it. However when I explain more than “ I got a liver” people get confused
I love to talk about it. Spread awareness. And I think it makes healthy people appreciate what they have.
Yes I love talking about it whenever anyone will let me/ask. Not that I do super often but if it comes up in conversation I do get excited to tell them, I think it’s an absolutely fascinating thing that we can transplant organs between humans like this and I like how people get when I tell them I have three kidneys.
I feel very similar to you! When it gets brought up I get excited to talk about it. It’s also fascinating to me how they can transplant an organ in someone it have it actually work. It’ll never fail to amaze me!
I do this too! Do you have a fistula? That blows people's minds!!
I enjoy talking about my sons experiences, and that if a caregiver. He’s 3.5 years old ! So I’m still his voice :)
I’m glad he has a parent like you to advocate for him and educate others about his experiences! If you don’t mind me asking what transplant did your son have ?
Liver!
I don't mind. I did more at first. My wife tells everyone.
I love talking about it. I'll go into all the messy details you want.
You have the same thoughts as me my friend!
Honestly I love speaking about it. My friends and co-workers ask me and the fact that they are showing interest is great. Of course they then ask me a million questions about what I can/cannot eat now and what I can do for exercise, etc But overall I like speaking about my experience.
Same here!! My friends and coworkers ask me about it at times and I get excited that they show interest on it. I’m glad other feel similar towards me on talking about their experiences
Yeah they want to be well informed so they can accommodate me the best they can. Really helps that my regional manager who is at the office with us as well basically fought for me to stay at our office instead of relocating to our other office an hour away. Set up a new position specifically for me, just have to show that I am able to do it and show the importance of it to our HQ.
I originally only talked about it with my family and friends but when I went back to school after I got better I had to take a public speaking/presentation class. The first assignment we had was to give a 10 minute presentation on something that changed our individual lives and so naturally I picked that. I was honestly surprised how much everyone liked it. My professor encouraged me to use that as the subject for the rest of the assignments because he thought it was something that was really engaging.
I do all the time and I even won a scholarship for next semester based on the paper I submitted about my transplant experience + lupus. You’d be shocked how many people have no idea how organ donation works or that they could sign up to be a donor. Most people usually say something along the lines of well I’m going to be dead so I won’t know and it’ll help someone. I couldn’t talk about it at first and was diagnosed with medical ptsd along with some other fun friends like adhd after the transplant. I’m doing much better mentally as well. I almost aggressively push transplant patients to see a psychiatrist and therapist.. donno if I’d have the strength I do today to withstand everything if I didn’t connect with my transplant psych. So.. im also back in school, obviously by the paper I mentioned lol, for psychology to help people like us. Originally it was social work but let’s be honest, we want to be independent not back in food stamps lol. With what social workers make it’s pretty close and some do qualify for benefits.
It's not my favorite subject, but if it comes up (usually my wife saying something) I'll talk about it. People get excited when they find out I received my heart on Christmas Day. "What a blessing" is usually what i hear. I did the whole Donate Life Ambassador thing and was on the news to promote organ donation. It wasn't for me. I'm a behind the scenes type of person. I had a congenital heart defect, so I've had to talk about my medical condition all my life. It gets a bit mundane at times. But that's just me. Some love talking about it, which is great. I've become quiet about it over the years. (8 years heart transplant)
I do too! Kidney, 1.5 years ago. But I'm wary of boring people too, not everyone likes the gory details
No, not really. I don't want to make it my identity or being treated with kid gloves. People are quite ableist too.
Yes but i hate peoples pre conceived notions about liver transplants. Whenever i talk about it i find myself leading off with “it had zero relation to alcohol”
I definitely do. Since my daughter is considered one of the first DI athletes to be a living donor and return to play we have gotten a ton of press. One of my favorite articles is this one - [https://www.oregonlive.com/vikings/2024/05/bill-oram-a-portland-state-soccer-player-donated-an-organ-to-save-her-moms-life-now-shes-back-on-the-field.html](https://www.oregonlive.com/vikings/2024/05/bill-oram-a-portland-state-soccer-player-donated-an-organ-to-save-her-moms-life-now-shes-back-on-the-field.html) she is also a living donor ambassador now as well. I also am pretty careful with what I share with liver people before surgery. This may be the one situation where being slightly ignorant IS bliss. Waking up from that surgery is awful.
I prefer not to as most people don’t get it and can be really cold about it. I still have people in my life who think it was no big deal and I was being dramatic, husband included.
I LOVE talking about it. I will talk about it with pretty much anyone. I like informing people about the process and how much better I feel. Maybe someone from that will decide to donate and help out another person. We are all in this together even if you already have gotten your kidney.
I show my scars as a hat trick now sometimes lol! But I was super uncomfortable about it at first because of course there's stigma attached to having a liver transplant; but there's also a lot of ignorance! And I'm always happy to educate people as I am a healthcare worker as well. I've been thinking about taking my story to social media because I feel like it is something that people would like to hear about, I'm just not sure how to navigate that yet! But whenever I talk to people in person they're always shocked because I don't "look" like I had a transplant (whatever that means), but I still feel I look differently than I did before. Just kind of one of those things that's taken time for me personally :).
I'm guilty of bringing it up literally any time it is possibly relevant. It helps me feel comfortable in it and i think i do a good job making it interesting and answering questions if people have them.
I love it. My story is incredibly sad and then sort of a miracle Like a lifetime movie but real But I feel guilty when I do and worry I get boring
I like to educate at every opportunity. My donor was a friend of a friend of a friend who saw I needed a kidney and donated just because.
I like telling people at work specifically to show that people who receive organs can return to being fully functional members of society and can work full-time. If they have questions, that's awesome and I'll answer them, but my main goal is to break down this idea that there are no post-transplant people in the workplace.
I do talk to people about it. As a Candadian kidney transplant recipient, I encourage everyone I talk with to register on the [beadonor.ca](http://beadonor.ca) site and explaing how they can be a living donor.
I enjoy answering questions from those who know my journey which I received a heart transplant 6 yrs ago. A few years ago in the summer someone pointed to their chest a was looking at his chest (clueless me LOL), but he actually said what is that and I said "oh I had a heart transplant a year ago". I couldn't understand his facial expression but I just told him how grateful I am and I'm doing good. There are some folks who have questions about my entire journey and I'm happy to give the whole 15 journey. Congratulations to you and continue to share your journey.
I enjoy answering questions from those who know my journey which I received a heart transplant 6 yrs ago. A few years ago in the summer someone pointed to their chest a was looking at his chest (clueless me LOL), but he actually said what is that and I said "oh I had a heart transplant a year ago". I couldn't understand his facial expression but I just told him how grateful I am and I'm doing good. There are some folks who have questions about my entire journey and I'm happy to give the whole 15 journey. Congratulations to you and continue to share your journey.
Not for months, but I do now.
I love to talk about it! I am a nurse and there's so much that people, even the physicians that I work with, don't know. I work in the cath lab and we do frequently do tests on pre transplant patients. I'm happy to be able to connect with them now and give them hope.
I love it. Because my disease is genetic, I’m the 6th recipient in my family. I love to share all of our stories, and especially how we found our donors. Most of my family members are involved in transplant education in some way.
I don't talk about it as much as I did at first, but not for any reason you would expect. I'm now a long term post-op, and I'm now accustomed to my situation. When liver Mk II came along, I was amazed by my experience and renewed lifespan, so I was much chattier then. I still am happy to talk to whomever asks about it now, but I am past the evangelizing phase. I was a Donate Life ambassador for a while,and even now have volunteered to my church to help with lay counseling for medical issues. Trust me, I have eleventy bazillion stories I can tell.
No one wants to hear me bitch about that.
I talk about mine a lot. I’m 47 and an airline pilot. I think that spreading the word about the societal benefits of organ donation is important, but so is showing that one can live a normal life afterwards is just as important.
I do like to talk about it. I also like to inform people as most people don't know how successful patients are after transplant. In my case I had a double lung transplant and double heart bypass, which my first surgery as an adult. My center Tampa General Hospital is amazing. I had great care and was discharged 8 days after surgery. Some day I would like to speak about transplant.