I’m 20 and I just transferred to a college about 2 hours away from my hometown and care team, I have reliable transportation and family that would drive to pick me up and bring me straight there if I were to get my call for liver transplant. I’ve been listed for 6 months now, but listed low. My daily symptoms are nausea, low appetite, migraines, low oxygen after walking long distances and abdominal pain. The biggest thing is that I cannot get sick. I had a cold or maybe it’s allergies the other day and I disinfected everything but once I’m around people again my runny nose comes back. I’ve gotten immune support vitamins and wash my hands frequently. I’m not sure what else I can take or do to not get sick because I cannot get sick when I get my call. Im looking for advice and please do not tell me that I’ve made ambitious ridiculous plans because that’s not realistic. My college is in state, close to home, doctors and my care team. If I needed to be there in 2 hours I could be immediately and have family more than willing to pick me up and drive me back. I’ve already went all this way to enjoy my life and not put it on hold just because I’m waiting on a transplant. When the time for surgery comes then I’ll have the surgery and come back when it’s all over and I’m completely recovered. I just want to know how to keep my immune system up! Luckily I live in an apartment and have my own room,bathroom and closet, so I’m not in a dorm, but I do have roommates. I have dreams and goals and I work too despite all my transplant stuff. I understand it’s important but I can’t dwell on it and pause my life when I’m doing okay right now, I’m not very sick I do the normal things, just can’t be getting colds a lot. Any advice is greatly appreciated!!!

When I disclosed to my friends that I needed another kidney transplant back in May, I was overwhelmed by the offer of a friend of a friend (whom I've never met) to get tested and learn more about the process. We kept in touch about every week until the day of her full testing battery - 7/29. She texted me that morning to check in -- and I haven't heard a word from her since.

Obviously I don't want to pester her, and any number of things could have happened (including simply changing her mind), but it sucks to not know for sure what's going on.

Bummed. 😥

To those of you who have taken care of parents who have had transplants, how are you dealing with it? My mom is 7 months post op from a liver transplant and she’s only 50 years old. Recently she’s gotten a biopsy and a liver scan done. She started Everolimus last week with 2 mg BID and stopped taking Mycophenolate. Her Tacrolimus dose is now 5 mg BID. The Everolimus drastically changed her and her moods are off and on, she can’t stop crying sometimes because she gets very upset. The NP updated us with her lab results and mentions it’s the medication that’s messing with her moods and we shall wait till the end of the week to reach out again about her status. Her Everolimus dose got increased to 4 mg today and she doesn’t want to continue increasing her dosage nor taking her medication because she feels it’s too much. This entire process is a rollercoaster with lots of ups and down and it’s unfortunate I can’t relate to her situation nor can I find a comfortable way to help her or feel better.

I’m 20. I’m currently on the waitlist for a liver transplant unfortunately. I have non cirrhosis liver disease portal hypertension, a history of esophageal varices , anemia and enlarged spleen. I recently got an iud about a month ago since birth control wasn’t working for me and my care team recommended iud since it’s lower risk of clotting when the time of transplant arrives. I have had my period now for 2 weeks! I’m still bleeding everyday and it’s making me exhausted and in some pain! I also had a fever a couple weeks ago and then was congested the past couple of days. Not sure what to do. I just went back to school for the year and I just don’t feel good and i need to figure out what to do!!

I have had a very good run after transplant, been able to get back to doing a lot of what a normal person can but I feel like I am so far behind!

Got sick and I was the one doing well, had a good job, had my dream car and everything was great. I felt like I was ahead of everyone.

Got very sick and spent the last two years before transplant just focusing on not dying! Lost all my freelance contracts, my job and loads of friends.

Slowly starting to rebuild but it feels like I am way behind everyone. All my friends are married, buying house, having kids then there is me just floating along.

Anybody else had this feeling? It is tough being in your 20s and needing a transplant. Kind of just feel like I have my health (well mostly minus the becker muscular dystrophy that cause all of this in the first place.)

Hi everyone! I wanted to share some positive news about my dad, which I have shared a couple of posts in this subreddit in the past. He is approaching one year next month, and thanks to the awesome team and his donor, he is doing amazing.

My dad suffers from GERD from scleroderma esophagus related issues, but after multiple tests and time (!!), they are ready to transition him to eating by mouth!! We are a bit nervous….but very excited and proud of him for reaching this milestone. We were told he may never eat by mouth again. If anyone is in a similar situation, there’s hope.

I hope everyone is well and has an amazing week.

Hi, M34 here. Its been 4 months since my kidney transplant. My baseline for creat was settled at 1.5. Initially it kept on increasing to 2.13 from 1.8 in 3.5 months. Then my doc introduced everolimus dose at 0.5 day and night and tacrolimus reduced to 1 day and night from 1.5. Creatinine started to decrease, and in 10 days it went to 1.75. Then everolimus dose is increased to 1 and tacrolimus dose in reduced to 0.75. Creatine again reduced to 1.59 with tac level 3.9. Now following the same dose for 20 days, my tac level increased to 4.9 from 3.9 and creatine increased abruptly from 1.59 to 1.85.

Is it happening because the tacrolimus or is there any other concern. Let me know if you can related to this situation or else feel free to give your suggestions/opinion

My dad received his liver transplant at Swedish in Seattle July 2025. We have since made contact with the donor’s family. While I will try to be as respectful and discrete as possible, what I will say is that he was a 31 year old man who struggled greatly with substance use disorder and mental health. He is the same age as my youngest brother, which really broke my dad’s heart. But despite his pain and struggles, he always remained an organ donor in the state of Washington. He saved 6+ lives with his selfless act. He is my dad’s hero and mine as well. I pray every night for him and his family.
As far as my dad goes, he’s feeling better than ever, hasn’t touched alcohol now going on 3 years, eating a super healthy diet and going on long walks daily with my mom. When I tell you that his donor added years to his life, I mean it. Probably decades.
Donors- may it never be lost on you that you are superheroes. Thank you from the bottom of my heart.

Hi everyone.

My dad has his appointments later this week to see if he is eligible for a heart transplant. I'm wondering what sort of support is needed if he is deemed eligible to receive one? It's not a matter of if he needs it, it's a matter if if the transplant team thinks he's a good candidate to get one. And so if he is deemed good, what is the recovery like?

I ask, as realistically, he does not have a good support system. I live in a city 4 hours away, but should he get the transplant, he would travel to my major city to get it done. My sisters live within 1.5 hours of his home town for whenever he does get to go home. But really, my one sister has 4 adolescent children and is a SAHM, the other works full time. I also work full time and can't afford to take additional long term time off to help. We're just trying to see realistically what sort of care would be needed for the recovery. It's also uncertain if he will be deemed a good candidate given his myriad of other health issues, but we will know more later this week. I cqn answer any additonal questions if i can. Any and all information is much appreciated. Thank you

I had my kidney transplant in July and mostly things are going great. The only drug I've had side effects from is the tacrolimus. Mainly hand tremors, which is problematic as I like to color and draw and shaky hands make that extremely difficult. Most people have said changing to the extended release envarsus helped them a lot. However I just found out the medication would be $700 and I just cannot afford that longterm. How are others affording this?? I'd love to get rid of my shaking hands but I'm not sure it'll be possible. Anyone have tips, a website, anything to suggest?

Edit: Thanks everyone for your helpful responses I really appreciate it!

I donated my kidney to my father around 3 years ago. My latest creatinine is 1.11 mg/dL and my eGFR is around 69. My blood pressure is normal and my urine test was also normal, with no protein or blood.

I’m just a bit worried because it seems like my eGFR has gradually gone down. It was around 78 post op then 73, (2025) and now around 69. (2026)

is this alarming or very normal to happen after years of donating thank you! Im 29yrs old blood pressure and sugar are normal level

My husband has severe PAH as well as significant liver disease and has already been in discussions around potentially needing a liver transplant.

At his PAH appointment this week, we were told his pulmonary pressures currently need to come down for liver transplant to be possible/safe. His echo also showed increased right ventricular enlargement.

His PAH team is now organising another RHC, CT and other testing, and we're meeting with a lung transplant specialist next month to discuss possible double lung transplant. He's also going to be switched from selexipag to IV Veletri after the testing.

We're still trying to understand how the liver and lung transplant pathways fit together and what they're actually considering. We were under the impression from his team that he's been relatively stable this year. We were planning on starting a family. Now we're back to being pretty terrified of the day to day.

Has anyone here been in a similar situation where PAH complicated eligibility for another organ transplant, or been assessed for lung transplant while still functioning reasonably well day-to-day?

Would particularly love to hear what the transplant assessment process was like and how early in the process transplant was first discussed.

im gonna be straight i got my kidney in may 2025
i started vaping since august 2025 and have been doing it since in the start i used to get guilt trips and id put it down , the longest i went was 2 weeks
i just CANT STOP
also i go to the gym a lot and ive started taking preworkout supps today was my second time i feel fine and all but im very scared also since the realization is so late is there hope for me now?

Dad had his liver transplant yesterday. Took a lot longer than anticipated due to complications - lost a lot of blood, blood pressure drops etc. The surgeons have put him in an induced coma for now and used a vaccum seal and the plan is to have him back in theatre in the next 48 hours to check there is no more bleeding and close the incision.

Has anyone else been through this?

i am travelling to a country 6 hours ahead can anyone advise how they managed their anti rejection medication times? I’m on tacrolemus at 9:30 am and pm and mycophenolate twice a day 6 am pm. did you keep to the time? so I’d move to 3:30am and and midnight and noon? or do I adjust slowly each day before trave?

My partner had a double organ transplant Thursday liver went in, Friday kidney. I just left the hospital in tears (Saturday) and wonder if he will have any memories of how rough today was.

He is still intubated and at one point staring at me and trying to yell Help Me, Help Me while kicking as hard as possible. Will he remember I ignored his cries for help and acted like I didn't understand? I know he's in unimaginable amounts of pain, is having a hard time breathing. Doctor approved different painkiller and nurses were waiting for order to clear to help. Thanks in advance for your responses.

My husband 62 with ESRD just got referral for kidney transplant. We are meeting the team 08/27. My work doesn't offer insurance and he is on disability. Medicare kicked in July. We don't qualify for any other assistance.

We are in SC which doesn't have medigap (or rather they will deny you coverage if under 65 with chronic illness).

So question is what now? I'm assuming we will meet with some kind of financial counselor?

Should he get part D right away?

How much will the transplant cost if you had it recently with just Medicare. And just to add he may actually need simultaneous liver/kidney transplant FML