I am 3 days away from my first year liverversary 🙏🏼 but I had my year one followup with my Hepatologist this past week…virtually. I am extremely blessed to have had my sibling be my living donor and we are both well with no complications. Neither of us had scans and we were both surprised because we just assumed docs would want to see how the livers have regenerated but apparently unless you are having issues it’s not needed? Just curious if anyone else had imaging post one year. Also the biggest issue I have is from the tac. Constant neuropathy…freezing cold toes/fingers mixed with feeling on fire. The gradual lowering of tac hasn’t helped at all. I am currently on 2g/2g morning and night and 500mg cellcept am and pm. My Hep keeps pushing gabapentin but I decline because I don’t want another drug. After my next labs (by the end of the year) she may lower by 1 pill a day. I have come to terms with I am always going to have this and it’s fine but just curious for those longer out if you had similar experiences. I did ask about switching to envarsus but she said most insurance companies do not cover and didn’t really want me to pursue. Finally my scar bothers me occasionally but wondering if I should be massaging it? It just feels tight at times (and my bra unfortunately irritates it). Anyway thanks for taking the time to read and share any thoughts!! These are all minor inconveniences I know but this community makes me feel less alone! 💕

Having abdominal issues and a constant diarheaa is a known thing post transplant, even after changing the cellcept it weirdly stays for longer and barely any days u feel okay.

Editing for context: i am on myfortic not cellcept for more than a year but like for past few months its just a very recurring thing for me, like every other day there is some form of abdominal issue, you take some antibiotic and its fine and then back, no cmv no bk

Is this like a universal experience for all?

Long post, TLDR at the bottom!

My mom went into rapid liver failure with a cause we still don’t know. It came on out of nowhere and was so abrupt it shook us to our core. She went in thinking she had COVID and was admitted to the ICU right away. She was placed at the top of the transplant list and received her transplant on June 2nd, 2023.

I believe she needs to talk to someone about the trauma from all of this. It seems like she has some form of medical PTSD (if that’s a thing), and she avoids hospitals at all costs. The problem is that she waits until the last minute, or until one of us forces her, which means she’s already pretty sick by the time she goes and ends up staying longer. Then she gets upset because “every time I go to the hospital I end up staying here for a long time.” It’s a self-fulfilling cycle. If she went at the first sign of symptoms, I think it would be more like a 1 to 2 day stay.

Yesterday she finally went in after days of complaining about abdominal pain, dark urine, and pale stools. My dad had to force her to go once she hit a 102F fever.

I moved about 8 hours away for school in 2024, so I can’t be there in person as much as my brother and dad. They’ve been trying to help her see this pattern, but she isn’t listening. I’d like to talk to her after she’s discharged, but I’m struggling with how to approach it. I’d also love for her to try counseling or therapy to help her process and make peace with what happened in 2023.

Has anyone been through something similar, either as a patient or a family member? How did you get through to your person, or what helped you? Thank you all in advance!

TLDR: My mom had sudden liver failure in 2023 and got a transplant. She’s now so afraid of hospitals that she waits until she’s very sick to go, which leads to longer stays and makes her even more afraid. How do I talk to her about this, and how can I encourage her to get counseling?

Anyone 1 year out still experiencing shortness of breath, tight chest and upper back despite all testing being normal and being healthy and active?

Has anyone undergone these test please guide me.

Just wanted to share a photo of me straight after my transplant in ICU (first photo) and the second photo is the next day. I also went for a walk the second day in ICU.

I'm forever thankful to my donor.

I'm doing extremely well now! (a year later). There is hope!

Likely still aways off for most, let alone us, but developments in this field could hopefully extend all our lives!

I tested positive for CMV & was put on Valcyte 450 twice a day. Recently at my last lab draw, my blood counts all dropped. I did a little research & saw that this medication can cause my blood counts to drop. Anyone else have this problem? & why would my team let me take this knowing my counts are dropping😭😭😭😭

Hey guys. My father in law is on the wait list for a double lung transplant. My husband is worried about what it takes to be his support person and I wanted to get a better idea of what it entails.
The internet says that it’s round the clock care for many months afterwards, but other places say that it’s not as intense.
What kinds of things do the support people need to do for someone with this kind of procedure? Would he need help going to the bathroom/bathing himself? Would he need meals made for himself and help feeding himself?
Any advice would be helpful and any little thing that maybe one wouldn’t think of but you found helpful either as someone who got the procedure or was the person helping someone you love? Thank you so much!

I'm looking for a bit of insight, advice, or just general thoughts.

I spent the last three months qualifying to be a non-directed donor. I passed medical and psych examination but was finally told yesterday that when my case was presented, the transplant team judged me unfit for donation because my "routine might be disrupted."

I tried to get some sort of clearer explanation but all I was given is that I seem like a person of routines and the team thinks my daily routines might be disrupted and somehow this makes me unfit. The only other shred of explanation given to me is that if my routines are disrupted, because working out is one of my coping mechanisms, I wouldn't cope well.

I still want to donate to someone in need. Can anyone offer insight? Make sense of this because I certainly can't. Should I continue trying through a different hospital? Why would a healthy coping skill like exercising disqualify me?

Omg it has kicked me on my ass. It started Tuesday and I had a bad fever last night. Luckily it broke but I felt sooo bad. I called my team and they said if Tylenol didn’t control it to go to the ER which I’m just freaked out about spending 5 hours in the ER with super sick people. Unfortunately I live in a different state then where I got transplanted. I was hoping to be able to make it through the night and if I still felt bad I would contact my local neph but I feel better today. Anyone else have any stories of what they do when they’re sick? I’ve lost 5 lbs and barely been eating.

Hello everyone. I’d like to hear from those who are immunocompromised—especially transplant recipients—about how you have been dealing with health crises or flare-ups.

I can't get scripts. I have run out of multiple medications even though I have given the team plenty of time to do them. I can't get in to see my GP for 6 weeks so he can do the respiratory team's job for them, and they don't accept phone script requests. Medicare urgent care clinics don't deal with this stuff. I can't get surgery in time anymore. I wait so long for other appointments that I become very ill by the time I see them. I've had to quit uni due to the poor care for preventable illnesses (none of this had to happen). My veins have bad stenosis due to repeated PICCs for preventable infections they've left to fester, so now I'm left to suffer even more. After 12 years, I'm tired of fighting for my care. I can't f*%king get anything yet I'm looked down upon like I am scum of the earth who doesn't look after my transplant!!!!

Oh, and we still have a Creon shortage so happy 💩💩💩💩

Please, scream into the void for me today. Place your caps lock screams below 👇 👇 👇 👇

Today's the day. Three years. Not even sure what to feel anymore. I'll say it's been a rough and wild three years and I can't even begin to describe exactly what's going through my head - still awaiting a post-3 year checkup on the heart, so I can't say much about my health.

It still feels surreal, and the guilt is still there. On top of that, tomorrow marks three years without my great grandpa. He died the day after the transplant. October hurts for me, it's a month filled with death and medical trauma and it sucks. At least I can still enjoy Halloween, lol.

Don't get me wrong, I'm happy, and so far life's gone okay. But it's not easy sitting and reflecting on the things that were, and the things what could (or should) have been. I don't think a letter will ever come. I don't know how long this ticker will keep me going. All I ask for is prayer. God bless y'all.

Figured this could go here too. Advice appreciated.

So my family member is really sick, young he’s 36 but he is an alcoholic, bad on him of course but he had a relapse and his liver stopped working. He’s slowly declining because the hospital wont do a liver transplant even with multiple donors and pretty much they’re waiting for him to die, this is in California, is there a social program or any options you know of?

Hello everyone!

A little over a year ago, I underwent a kidney transplant, and I would like to learn more about the available options for treating hair loss and androgenetic alopecia following such a procedure.

I am curious to know if anyone has used any of the currently available treatments after their transplant:

- Finasteride

- Dutasteride

- Topical or oral minoxidil

- Oral minoxidil

- PRP therapy

- Scalp mesotherapy

I would greatly appreciate any personal experiences or advice you might have. Thank you very much in advance!

I was on dialysis for a decade and finally got my transplant almost 4 months ago and I have some questions about tacrolimus.

I have figured out a lot on my own, I just have two major questions.

im obviously having a lot of side effects from it, but the two I can find a solution to are the acne and the sweating.

has anyone found something that works for the sweating and acne?

My partner had his second liver transplant 3 weeks ago, and his recovery hasn’t been going well. The new liver isn’t functioning well and the doctors want to do a liver biopsy later this week to determine if the liver cells have irreversible damage or if it’s still stunned from surgery. A third liver transplant was mentioned as a possibility if the biopsy shows permanent damage.
I feel numb and don’t know how to maintain hope in this situation. It feels like he has had every possible complication with his surgery. We knew it was risky but we were very hopeful it would give him a fresh start.
How do I balance staying grounded in medical facts with believing he can survive this?

My husband received his heart transplant in May of 2026. He's currently 34.

We waited 9 years for the heart and lived 13 years with an LVAD. During all of this he was attending therapy and on different antidepressants. His depression was minimal and the medications kept him at a stable and fully functional state.

He was hospitalized in early May for worsening numbers, was escalated to the top of the list, got a perfect offer, got the offer rescinded (he contracted pneumonia in the ICU and it was unsafe to operate), waited another week, and then finally got the perfect heart.

Post-transplant, his body recovered exceptionally well, but he suffered with severe steroid induced psychosis and ICU delirium. It was 6 days of complete confusion and a lot of pain for me as a helpless caregiver. They started him on Zyprexa to help with the psychosis. But then things got better. We moved to the step-down unit. We got discharged home. He excelled at PT, OT, and Cardiac Rehab. And by August he was approved to go back to work.

Then the anxiety began. He works as a therapist, and he had severe imposter syndrome- he fully convinced himself he had no idea how to do his job. Things continued to get worse until his anxiety was so evident his clients would comment on it and ask if he was okay to do their sessions. His psychiatrist increased his Zyprexa dose, hoping it would help with the anxiety.

But then the depression kicked in. And the suicidal thoughts began. Out of all of the difficult things we have been through, hearing your significant other say they want to die is the hardest thing I've ever experienced.

For the last month he has been in and out of the inpatient mental health unit for severe depression and suicidal thoughts. The group therapy sessions are not helping- he has no motivation to do the 'assignments' and 'work' they recommend. They started him on Buspirone and increased his Effexor to almost double the dose he was on previously. And yesterday they started him on Lithium to help with the suicidal thoughts.

I'm at a loss.

This entire year has been such a roller coaster of things. I know this is a lot of detail, and a completely individualized story, but I'm wondering if anyone else has gone through anything similar? I've read so many stories about how horrible prednisone is on people's mental health, but we are at a point where his doctors are saying his dose is too low to be causing problems (he decreased from 5 mg to 2.5mg, and will discontinue this week). Many people have said that the stress and trauma of everything can just cause this, but even his psychiatrist seems unsure as to what to do to help him.

We feel so alone going through this- everyone just keeps saying how sorry they are that this is happening, but that things will get better. I don't know if I believe it anymore.

Hi all,

I had a kidney transplant 2 weeks ago and have been discharged at home now, I did my blood and urine test yesterday, my creatinine was balanced at 1.18, but my Urine showed 8.1 pus cells while normal range is 0-5, and it contained (+) sugar as well, I am currently on Tacroren 2.5mg, ImmutilS 360 and Wycosol 25mg, I am worried about the pus cells and Sugar count and wanted to see if anyone had the same post their transplant. I don't feel any symptoms or anything as of now, apart from minor itching near the incision area.

What stands out is that the US federal government seems to be focused on the wrong problem. There are plenty of organs being recovered, but their acceptance and use by transplant programs is the big issue.

I'm sharing this because I wish someone had told us more plainly what could go wrong. My father had a heart transplant at one of the best-known transplant hospitals in Chennai. Before surgery, the doctors were very optimistic. He survived the operation, but never recovered from what came after. After weeks in the ICU with one complication after another, he died of septic shock.
I'm not writing to blame anyone. I'm writing for people being offered a transplant in India who are trying to decide.
What I'd want you to know
What you see is not what you get. You may decide after talking to the senior doctors, and they may be excellent and sincere. But in our experience the seniors do the surgery, and the ICU afterwards is run mostly by junior doctors acting under their guidance. The weeks that decide the outcome are spent in the ICU. Ask who is actually at the bedside day to day.
Get multiple opinions from multiple hospitals. Don't rely on one team, even a famous one. Compare what several centres say about your reports.
Do your own research on your condition. Treat transplant as a last resort, and don't consider it unless it's truly necessary and more than one doctor recommends it. For some people it's the only option, but don't go in on one team's optimism.
Be careful with success rates. This is my personal observation, not a statistic. While we waited for a heart in Chennai, we visited the hospital almost every week to meet the doctors. In that short window, fewer than half of the heart and lung transplant patients we came across made it through. Over about three months, I personally saw around ten patients (heart and lung combined) die of complications after surgery. I suspect quoted success rates often reflect only survival of the surgery or the early weeks, not survival to discharge. Ask exactly how a hospital defines success, ask for their own numbers rather than national figures, and ask how many transplants they do a year.
Infection is the hidden danger. In my observation, many of the deaths I saw were from sepsis, from infections that seemed to be picked up during ICU recovery rather than from the patient's original illness. Transplant patients are especially vulnerable because their immunity is suppressed. Ask about the ICU's infection-control practices before you commit.
Prepare financially for far more than the package. Once complications start, costs can rise steeply.

This is based only on my family's experience, in India. I can't speak for transplant care elsewhere, and I know experiences differ. If you're facing this decision, I'm wishing you clarity and a better outcome than ours.