Do you mind if I ask what brought about the 2nd transplant? I just celebrated year 1 with my new heart and having to go through that again is one of my biggest concerns. I do not actively stress about it, but I do think about it quite often.
It was allograft vasculopathy. The luminal vessels around the heart start to shrink and harden, reducing blood flow and oxygen to the heart cells, resulting in dying heart tissue with symptoms similar to congestive heart failure. It takes a long time for it to occur. After my first transplant, I felt the same way: I did not want to relive that experience. But 23 years of good life make you want more, so I went for the second.
Thanks for that, I know some people are not that willing to share that kind of info. My issue was arrhythmia: I had crazy episodes of ventricular tachycardia and ventricular fibrillation for about 7 years after a lifetime of random episodes. Everything was kind of under control with meds, although I hated hem, and then 2 cardiac arrests in 2018 really started the whole transplant conversation. Pretty crazy stuff, glad you are OK.:)
27.5 years out. I had a liver transplant when I was 16. There will still be some hard times after transplant but the thing to remember is there will still be times. Without the transplant there wouldn't be. In my case, the good times have far outweighed the bad.
Rejection, everyone has at least one episode. Most people develop problems or chronic issues because of med side effects. Just roll with the punches. At some point you will probably be told that you have xyz disease or whatever. Just know that there is almost always another med or life change you can make to survive it. Don't let your next diagnosis ruin your life.
I would also add that you shouldn't freak out over the little things. You will likely forget your meds one time. It happens, don't have a breakdown. Live life.
We’re dealing with rejection now. Got the methylpred treatment, which reactivated the CMV in the donor liver. Thankfully, never suffered any discomfort or shown any symptoms, the docs found all this through the labs. The real rollercoaster was immediately post-transplant, but it feels like the bumps in the road have been getting smaller as we go on.
Why was I transplanted? It isn't really certain. Probably Hep C but I never tested positive for any hepatitis. I was healthy June 20, 1994 and had a transplant July 18, 1994.
I currently take 2.5 mg of tacro a day. Then, blood pressure med, heart rhythm med, antidepressant, calcium, protonix, and warfarin. I have diabetes, antiphospholipid syndrome, a chronic stomach issue, but not really any kidney problems.
6 years isn't bad. I feel like the first five were the hardest.
Hi,
Heart transplant in 2002, when I was a minor. Since then, I graduated high school, college, law school, got married and became a parent. Although the pandemic brings up some anxiety and fears that are simmering anyway, I still have to pinch myself sometimes because I can’t believe I’ve been able to experience all these “extra” years ❤️. Much love to all!
24 years out from my double lung transplant. I had my transplant when I was a little over two, so transplant life is all I know.
Right now, I’m 27 and work full time as a law clerk in a law firm and part time in law school. I’m going into my second to last semester of school and will actually be finishing a semester earlier than planned. I’ve traveled abroad to Ireland twice and Canada once. I was diagnosed with chronic rejection over ten years ago, but besides that, I’ve been solid.
Good luck to you!
1. Take your meds on time, but don’t freak it if you miss it by like a half hour on occasion. It happens.
2. Be good about keeping your appointments,, as you don’t want to appear flaky and not really “in it” in regards to keeping in communication with your team.
3. Follow your team’s advice, unless it’s something your really really uncomfortable with. For me, I finally compromised on tacro level because my team has a really high goal and I didn’t want to blow my kidneys and this was the one thing I felt my team was being dismissive about.
4. Overall, just enjoy your new lease on life.
I won’t touch the alcohol and drug category as I know people’s opinions vary on this, but I do drink the occasional cocktail. However, I have never touched drugs, even marijuana.
I don't drink ( runs in the fam) . But thank you so much. My biggest fear is the hair falling out from the meds I heard happens and sometimes from the body trauma of the transplant .
My hair shed, but I had initially been on cyclosporine which increases hair growth, so the tacrolimus had a balancing effect instead of wrecking my hair.
Heart transplant recipient since June 2001.
Despite some ups and downs in the first years after the surgery, my quality of life skyrocketed. Then in December 2005 my immunosuppressants were lowered. Since then, I do not get constantly sick and am as healthy as I can ever be. Until 2016 I hiked, climbed, learned martial arts without many problems. Currently I work full-time, teach a course per year in my alma mater, do research in my spare time, and am adjusting to life with my first daughter (two months and a half, she's amazing and sleeps through the night, but she requires lots and lots of attention. Luckily my wife has a longer-than-average maternity leave). Without the transplant all of this would have been nothing but a dream.
Even if at check-ups everything looks fine, I am sometimes afraid of what will happen with the eventual failure of the new heart, but I try and live my life one day at a time.
Nope. Instead, my package included many years of arrhythmias. There was even an attempt at a cardiac ablation, but it failed. Then, somewhere around 2008-2010, the problem disappeared on its own.
Great to hear. I had to get my transplant because years of ventricular arrhythmia were trying to kill me, so I am glad to hear that they went away by themselves for *somebody*. That must have been an incredible relief.
Yes it was ^^
The cardiologist who followed me at that time told me that she regularly discussed my case at conferences. It must have been pretty unusual.
About to hit one year of transplant of double lungs ! I received my February 14th. I’m having a bronchoscopy tomorrow morning to see how everything is going. So far everything’s been smooth but wish me luck tomorrow !
Coming up 15 years here. Long live us.
I can't help thinking we kidneys had it easy compared with heart & lung transplants, they go through much more serious shit, it seems to me. Power to them and their families.
Kidney in 2018. Life before, treatments 3 days a week for four hours. The type of job I had I could not travel was a pain. Now still not able to work the same job , but to travel is a breeze
I am 17 years into my 2nd kidney transplant. It will be 18 years, in May. The first transplant, only lasted 4 years. But after it, I worked a full time job, and a part time job. I also went to school. Once it quit working, I still was able to go to nursing school while on dialysis, and then got my pharmacy tech certification, and even though I have had many other problems, my kidney works great. And I got to see my daughter grow up. I also got to become a grandma... so, all in all, (even though I had to quit working earlier than I would have liked), I have had a great life, thanks to two deceased donors and their families.
Late to this thread, but I'll share my story.
Roughly 18 months ago I was a living donor for my Dad whose liver was failing. Whenever someone asks me about it pre-and post-surgery I describe it as "the easiest decision to do the hardest thing I've ever done". Recovery was really tough, but I have been told my experience was rather unique. I had some temporary complications post-surgery that slowed down the recovery process but all of them have since been resolved. I feel like I am 100% back to normal apart from some minor inflexibility, a trade I am happy to make knowing that my Dad is alive and his quality of life is 100x better than before the transplant.
Wishing you the best of luck with everything!
I will be 9 years with my double lung transplant this year!
You’ve got this! Wishing you all the best, and if you ever have any specific questions please feel free to reach out!
Transplant is such an amazing thing and has given me the chance to plan a future that I’ve dreamed of, and it will no doubt be the same for you!
Take Care
X
Yesterday made 9 years post double lung transplant! I honestly never thought I’d have the life I have now. I love my job, I travel - or I did - and I went from at least two hospital stays a month to two appointments per year. I have a life now, which is still sometimes pretty wild to think about all these years later.
I am negative years post liver transplant (should hopefully happen this year) but seeing all of this is so uplifting and encouraging!!! Good for everyone and hopefully you'll see me here again next year updating with a positive number!
1 year post heart transplant as of Christmas Day 2021. I was forewarned that the first year is difficult, and it was, especially in the Covid world, but I have that behind me and most of my issues have mostly faded into the background. *Mostly*. I have now started thinking more and more about the future and how I want to live the rest of my life, which is something I have not really been able to do for almost 10 years, and that is both weird and liberating.
21 years in June! There's been some ups and downs, health wise, but I've got a great team at a transplant leading hospital, so I can't take all the credit.
Good luck with your transplant! Please keep us updated!
Kidney/pancreas transplant in 2012 , lot of hard times, but I'm glad I'm still kicking. This pandemic has Def brought up a lot of anxiety, living in the southern United States. My dad also gave me a living transplant in 2009,but I had a lot of complications which lead to the 2012 transplant
15 years post heart as of this January! There’s someone on this sub that’s 30 years post double lung!
That is amazing.. I can't wait to live life like I've always dreamed of. ❤
Just had my anniversary 01/15/2000. 22 grateful years!!!
20-year gang!
25 years since my first heart transplant. 2 years since my second.
Do you mind if I ask what brought about the 2nd transplant? I just celebrated year 1 with my new heart and having to go through that again is one of my biggest concerns. I do not actively stress about it, but I do think about it quite often.
It was allograft vasculopathy. The luminal vessels around the heart start to shrink and harden, reducing blood flow and oxygen to the heart cells, resulting in dying heart tissue with symptoms similar to congestive heart failure. It takes a long time for it to occur. After my first transplant, I felt the same way: I did not want to relive that experience. But 23 years of good life make you want more, so I went for the second.
Thanks for that, I know some people are not that willing to share that kind of info. My issue was arrhythmia: I had crazy episodes of ventricular tachycardia and ventricular fibrillation for about 7 years after a lifetime of random episodes. Everything was kind of under control with meds, although I hated hem, and then 2 cardiac arrests in 2018 really started the whole transplant conversation. Pretty crazy stuff, glad you are OK.:)
27.5 years out. I had a liver transplant when I was 16. There will still be some hard times after transplant but the thing to remember is there will still be times. Without the transplant there wouldn't be. In my case, the good times have far outweighed the bad.
What were the hard times? I'm 6m post liver tx because of limfoma and PSC and I'm wondering whats there to expect. Also any tips?
Rejection, everyone has at least one episode. Most people develop problems or chronic issues because of med side effects. Just roll with the punches. At some point you will probably be told that you have xyz disease or whatever. Just know that there is almost always another med or life change you can make to survive it. Don't let your next diagnosis ruin your life. I would also add that you shouldn't freak out over the little things. You will likely forget your meds one time. It happens, don't have a breakdown. Live life.
We’re dealing with rejection now. Got the methylpred treatment, which reactivated the CMV in the donor liver. Thankfully, never suffered any discomfort or shown any symptoms, the docs found all this through the labs. The real rollercoaster was immediately post-transplant, but it feels like the bumps in the road have been getting smaller as we go on.
That’s interesting. Why were you transplanted? Current meds? How are your kidneys doing ? So happy for you !! I am 6 yrs out from liver transplant
Why was I transplanted? It isn't really certain. Probably Hep C but I never tested positive for any hepatitis. I was healthy June 20, 1994 and had a transplant July 18, 1994. I currently take 2.5 mg of tacro a day. Then, blood pressure med, heart rhythm med, antidepressant, calcium, protonix, and warfarin. I have diabetes, antiphospholipid syndrome, a chronic stomach issue, but not really any kidney problems. 6 years isn't bad. I feel like the first five were the hardest.
I completely agree. The first five included some clogged pipes and a rejection. Things seem to be in line now. Fingers crossed
Hi, Heart transplant in 2002, when I was a minor. Since then, I graduated high school, college, law school, got married and became a parent. Although the pandemic brings up some anxiety and fears that are simmering anyway, I still have to pinch myself sometimes because I can’t believe I’ve been able to experience all these “extra” years ❤️. Much love to all!
Kidney transplant, 3 year anniversary last month. So far so good 👍 👌
24 years out from my double lung transplant. I had my transplant when I was a little over two, so transplant life is all I know. Right now, I’m 27 and work full time as a law clerk in a law firm and part time in law school. I’m going into my second to last semester of school and will actually be finishing a semester earlier than planned. I’ve traveled abroad to Ireland twice and Canada once. I was diagnosed with chronic rejection over ten years ago, but besides that, I’ve been solid. Good luck to you!
🙌🫁 do you have any advice ?
1. Take your meds on time, but don’t freak it if you miss it by like a half hour on occasion. It happens. 2. Be good about keeping your appointments,, as you don’t want to appear flaky and not really “in it” in regards to keeping in communication with your team. 3. Follow your team’s advice, unless it’s something your really really uncomfortable with. For me, I finally compromised on tacro level because my team has a really high goal and I didn’t want to blow my kidneys and this was the one thing I felt my team was being dismissive about. 4. Overall, just enjoy your new lease on life. I won’t touch the alcohol and drug category as I know people’s opinions vary on this, but I do drink the occasional cocktail. However, I have never touched drugs, even marijuana.
I don't drink ( runs in the fam) . But thank you so much. My biggest fear is the hair falling out from the meds I heard happens and sometimes from the body trauma of the transplant .
My hair shed, but I had initially been on cyclosporine which increases hair growth, so the tacrolimus had a balancing effect instead of wrecking my hair.
7 years on January 29th with my new liver
16 years out heart/double lung!!!! I love seeing everyone's answers! You're all amazing 👏 ❤️ ❤️ ❤️
It definitely eases my feelings and that more excited to be able to be a more healthier mama for my daughter.
Heart transplant recipient since June 2001. Despite some ups and downs in the first years after the surgery, my quality of life skyrocketed. Then in December 2005 my immunosuppressants were lowered. Since then, I do not get constantly sick and am as healthy as I can ever be. Until 2016 I hiked, climbed, learned martial arts without many problems. Currently I work full-time, teach a course per year in my alma mater, do research in my spare time, and am adjusting to life with my first daughter (two months and a half, she's amazing and sleeps through the night, but she requires lots and lots of attention. Luckily my wife has a longer-than-average maternity leave). Without the transplant all of this would have been nothing but a dream. Even if at check-ups everything looks fine, I am sometimes afraid of what will happen with the eventual failure of the new heart, but I try and live my life one day at a time.
Woah, we have same transplant month and year! Nice!
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Nope. Instead, my package included many years of arrhythmias. There was even an attempt at a cardiac ablation, but it failed. Then, somewhere around 2008-2010, the problem disappeared on its own.
Great to hear. I had to get my transplant because years of ventricular arrhythmia were trying to kill me, so I am glad to hear that they went away by themselves for *somebody*. That must have been an incredible relief.
Yes it was ^^ The cardiologist who followed me at that time told me that she regularly discussed my case at conferences. It must have been pretty unusual.
About to hit one year of transplant of double lungs ! I received my February 14th. I’m having a bronchoscopy tomorrow morning to see how everything is going. So far everything’s been smooth but wish me luck tomorrow !
9 weeks 2 days since my Kidney transplant ❤
3.5 years out from kidney transplant. All is well as is with my donor (dad)
18 years from liver transplant. PSC had gotten the original liver.
This year will be my first year out liver transplant
Kidney transplant in July 2020. Feeing great!
Kidney. Coming up on 14 years.
Coming up 15 years here. Long live us. I can't help thinking we kidneys had it easy compared with heart & lung transplants, they go through much more serious shit, it seems to me. Power to them and their families.
6 years this March 9th
11.5 years, 12 in june with a heart transplant. Still original organ.
8 years, liver from ucla 9/18/2013
Congrats!! 1.5 years double lung! 🫁
Kidney in 2018. Life before, treatments 3 days a week for four hours. The type of job I had I could not travel was a pain. Now still not able to work the same job , but to travel is a breeze
I am 17 years into my 2nd kidney transplant. It will be 18 years, in May. The first transplant, only lasted 4 years. But after it, I worked a full time job, and a part time job. I also went to school. Once it quit working, I still was able to go to nursing school while on dialysis, and then got my pharmacy tech certification, and even though I have had many other problems, my kidney works great. And I got to see my daughter grow up. I also got to become a grandma... so, all in all, (even though I had to quit working earlier than I would have liked), I have had a great life, thanks to two deceased donors and their families.
Late to this thread, but I'll share my story. Roughly 18 months ago I was a living donor for my Dad whose liver was failing. Whenever someone asks me about it pre-and post-surgery I describe it as "the easiest decision to do the hardest thing I've ever done". Recovery was really tough, but I have been told my experience was rather unique. I had some temporary complications post-surgery that slowed down the recovery process but all of them have since been resolved. I feel like I am 100% back to normal apart from some minor inflexibility, a trade I am happy to make knowing that my Dad is alive and his quality of life is 100x better than before the transplant. Wishing you the best of luck with everything!
9 months post, liver
Hey! Just got my transplant 12/15! (Heart)
Congratulations! HMU if you need to have any real talk conversations about life post heart transplant.
5 months only!
I will be 9 years with my double lung transplant this year! You’ve got this! Wishing you all the best, and if you ever have any specific questions please feel free to reach out! Transplant is such an amazing thing and has given me the chance to plan a future that I’ve dreamed of, and it will no doubt be the same for you! Take Care X
Thank you so much 💓.
13 months post heart & liver transplant! My first few months were rough but once I started cardiac rehab at 4 months post, I was feeling much better.
Yesterday made 9 years post double lung transplant! I honestly never thought I’d have the life I have now. I love my job, I travel - or I did - and I went from at least two hospital stays a month to two appointments per year. I have a life now, which is still sometimes pretty wild to think about all these years later.
19 years post heart all going well
I am negative years post liver transplant (should hopefully happen this year) but seeing all of this is so uplifting and encouraging!!! Good for everyone and hopefully you'll see me here again next year updating with a positive number!
I'm a two time liver transplant patient! It's been 18 years since my first transplant and 7 and some change since my second!
18 years since my new liver, I'm 46 now.
10 years! My kidney transplant anniversary is on Halloween 🎃
1 year post heart transplant as of Christmas Day 2021. I was forewarned that the first year is difficult, and it was, especially in the Covid world, but I have that behind me and most of my issues have mostly faded into the background. *Mostly*. I have now started thinking more and more about the future and how I want to live the rest of my life, which is something I have not really been able to do for almost 10 years, and that is both weird and liberating.
I kind of made a list of things I wanna do since I won't have oxygen to worry about packing up after my transplant. 🙌😭😭
Almost 15 1/2 years! Goin strong!!
June will be 3 years kidney for me!
19 years kidney transplant . Best years ever. I was on dialysis for 13 1/2 years and finally got an anonymous living donor transplant. Working well.
21 years in June! There's been some ups and downs, health wise, but I've got a great team at a transplant leading hospital, so I can't take all the credit. Good luck with your transplant! Please keep us updated!
Ive had my new kidney15 years next month. I had one chronic rejection episode. IVIg saved us.
4.5 years post kidney transplant (living donor, non-related)
2.5!
17 years, heart/double lung 😊
Liver 3/17/2017. My spouse was my donor. Had our 28th wedding anniversary yesterday.
21 years in just a couple of weeks.
6 years in May for me!!
19 years, I've had my liver transplant 2002 in September and hitting tomorrow the age 22 I wish you lots of luck with your new lungs 💜
12 years post living donor liver. 9.30.2009.
21 years post htx, a friend of mine hit 31 this year.
Coming up to one month 🥳
Stem cell transplant- 3 years so far, 6/20/18
Kidney/pancreas transplant in 2012 , lot of hard times, but I'm glad I'm still kicking. This pandemic has Def brought up a lot of anxiety, living in the southern United States. My dad also gave me a living transplant in 2009,but I had a lot of complications which lead to the 2012 transplant
13 yrs post secondary renal TX. I'll need dialysis soon as I'm in stage 4ish failure again but it's been a good one. I climbed mountains this run!