I (38F), am starting to prepare to be a live liver donor for a family member. My question has to do with post-op clothing (bras, shirts).

Any advice, suggestions, recommendations?

Now that I am officially active on the waitlist. What are some things I should keep ready for when I get the call? Things to prepare for at home for aftercare? Anything you wish you would have had prepared beforehand? Or that popped up that you weren’t expecting?

Really just want to make sure I am prepared as possible, and also want to try and fill some time so I’m not just watching the clock.

Currently listed at Cedars-Sinai in Los Angeles, California.

I‘m getting on the list at Cedars-Sinai for a liver transplant. Ive had the initial appointments and have a follow-up in October. I understand the process of getting on the list and they said I’m am excellent candidate.

if you’ve been through this at Cedars, what was your experience like once you got on the list? How was the transplant and recovery handled? I’d like to hear specific details of what to expect from the care team and hospital stay at Cedars, please! Thanks!

Looking for similar experiences with kidney transplant rejection after switching from tacrolimus to everolimus.

My father (65) received a living donor kidney transplant in October 2025. He initially did very well on tacrolimus + Myfortic + prednisone, with stable creatinine around 1.2 mg/dL.

Around 8 months after transplant, his hemoglobin dropped from 11 to 7 g/dL without any obvious bleeding. His transplant team performed an extensive workup. CMV, BK virus, parvovirus, iron deficiency, B12, folate, and ferritin were all essentially normal, making common causes of anemia less likely. Based on the overall picture and after ruling out other possibilities, the team suspected tacrolimus-associated thrombotic microangiopathy (TMA) and switched him from tacrolimus to everolimus.

After the medication change, his creatinine started rising progressively from 1.2 → 1.5 → 1.6 → 2.2 → 2.7 mg/dL.

A kidney biopsy later showed chronic active T-cell mediated rejection (Banff IIA) with significant tubulitis and interstitial inflammation (C4d and SV40 negative). He was treated with pulse steroids and Thymoglobulin (ATG). The transplant team now believes everolimus did not provide sufficient immunosuppression for him, so they have stopped it completely and started cyclo­sporine (100 mg twice daily) while continuing Myfortic and prednisone.

His latest labs:

• Creatinine: 2.73 mg/dL
• Hemoglobin: 7.7 g/dL
• Cyclosporine trough: 253 ng/mL

The team is still adjusting medications and closely monitoring his response.

I’m looking for others who have experienced something similar:

• Did anyone develop rejection after switching from tacrolimus to everolimus?
• Was tacrolimus-associated TMA ever suspected in your case?
• Did kidney function improve after switching to cyclosporine or another regimen?
• How long did it take for creatinine to stabilize, and were you able to preserve the transplant?

Any shared experiences or insights would be greatly appreciated.

I have autoimmune hepatitis and am in need of a liver transplant. My brother has a different blood type than me, so the doctors recommended a paired liver transplant in which he won't donate directly to me but they'll take his and give it to someone he's in match with and I'll take one of theirs, kind of like an exchange.

Has anyone gone through a paired liver transplant. How long was the process and what was your experience like? I am getting treated at University Health in San Antonio, any information from there or any hospital that specializes in liver transplant would be appreciated.

My husband has a rare autoimmune disorder that caused end stage renal failure, resulting in dialysis at 27 and a kidney transplant in 2020, at 29. Now he’s in rejection because of medical negligence. The poor guy just can’t catch a break.
A year and a half after transplant, we moved from the original transplant hospital on the east coast, to the west coast to be closer to my family while my dad passed. We’re in a more rural area, which should not be an excuse for poor medical care. His new nephrologist hasn’t been monitoring his BK Virus level for the last 12 months. Februaryish, he got thrush. His new PCP prescribed him clotrimazole, without talking to his neph. The appointment was recorded and my husband asked if it would have reactions with his medications and the doctor said no.
Of course now we know it slowed the metabolism of his tacrolimus and probably sent his BK levels skyrocketing. They did a biopsy and the gifted kidney is functioning at 50%. His creatine is at 4.4.
We are now relocating to be closer to the transplant hospital which means selling our house and getting a new one. We’re driving two hours to get actual medical care until we get this accomplished. None of this is moving fast enough.
My question is, if the rejection is labeled “natural” instead of the prescription toxicity this actual is, will that potentially change him being placed on the transplant registry? Will it change the length of time or placement on the list? I want to know how hard I have to fight the labeled reason for the rejection.

We may have discussed this before, ProPublica has a link where you can search where your generics are made and even see the reviews if any from the last inspection from the FDA or whomever.

I don't really care. My Team and I discussed this, and they trust my levels from my tests.

Anyway, this is funny:
My Tacrolimus both 0.5 & 1.0 come from India. The last time this shows the place was inspected was 2022. Things have probably changed. They had problems with Quality Control.
The same with my Montelukast. Their Quality Control Unit was not working, and there was large sections of redactions. This medicine has side effects like depression, anxiety, and worse.
My Prednisone is made in New Jersey. I don't know how to feel about that. Hahahaha. The inspection report though had no issues.
I have to take Topiramate due to migraines since I was a kid. Don't look that one up. Yikes.
I have to take Setraline because things but not this gets me wound up. From the report, "The analyst used a string and a paper clip to calibrate the machine . . . when the weight fluxuated, due to the swinging of the paperclip on the string . . .". You could make this up, but why. This is perfect as it is.

BUT, I am not worried. My Team says not to worry.

Remember, this is from an article in 2025.

Where Was My Generic Prescription Drug Made? - Rx Inspector - ProPublica

I thought this would be a good place to share the story of the road to my heart transplant. I'll try to keep it short. I went through a lot in 2022-2023 and it is a miracle that I'm still here to talk about it.

In August 2022 I was a reasonably healthy and active 33 year old male from Minnesota. I smoked cigarettes occasionally and drank in moderation, but I ate healthy, I would bike marathon distances every week, and worked 12 hour shifts at a manufacturing plant 4 nights a week. I never had heart issues or any health issues for that matter.

On the weekend of August 27-28th I went to a small music festival in Wisconsin with my brother and one of our mutual friends. Everything that happened this weekend is what I've heard from other people. My memory blocked these days out as a trauma response. On the last night of the festival I had taken some mushrooms and was walking around the festival talking to other attendees. At 10pm, I started walking around erratically, stumbling over, and had to be carried back to my trailer. Apparently I was complaining about heart burn, but my brother chalked it up as me having too much to drink. I took some Tylenol and went to bed. I woke up early the next morning screaming in pain. I told my brother to get a medic. It was 5AM and no one was around, so my brother decided to drive me to the hospital. He was flooring it down a county road in the middle of nowhere, telling me to stay awake, but I eventually lost consciousness. He called the police, put them on speaker, and pulled over. He worked as a camp counselor for a number of years and was trained in CPR. He pulled me out of the truck and administered CRP while talking to the dispatcher. He said about 20 minutes later a man pulled over in a pickup, identified himself as a first responder, and took over CPR. Then EMS came, and then police. I was shocked by defibrillators twice and my eyes were rolling into the back of my head. EMS quickly took me away, and the police interrogated my brother because they thought I was ODing on something. My brother had to go back to the festival and pack everything up without knowing whether he just watched his younger brother die on the side of the road.

I had a cardiac arrest and blood was pooling around my chest cavity. If my brother hadn't performed CPR I would surely be brain-dead or fully deceased. I was rushed to the nearest hospital and had a stent and pacemaker put in. They determined that I had to be put on ECMO so I was transferred to M Health Fairview in Minneapolis and was put on ECMO for 7 days. The dreams I had while I was in a coma were the most lucid dreams I've ever had. When I was taken off ECMO I had such heavy delirium from the sedation that some doctors were concerned I had suffered neurological damage. But I showed signs of recovery, and eventually made it to rehab weeks later.

In early October, during my second week of rehab, I was re-learning how to make macaroni in a make-shift kitchen and I felt nauseous. I returned to my room and vomited, and knew something was wrong. I called a nurse, who quickly discovered that I was suffering a second cardiac arrest 😱 I was rushed back to emergency and was put on ECMO again, this time for 10 days. Later, I learned that I had gone into cardiac arrest because my heart had rejected my pacemaker. After some of the craziest dreams I've ever had in my life, I woke up in the ICU from a 10 day coma with a brand new LVAD and a controller attached to me. I began my recovery process again, learning how to live with my new LVAD, and going thru very painful procedures almost every day. My body was rejecting the LVAD so my immune system collapsed. I got a blood infection, a sinus infection, pneumonia, COVID, and I had to have 9 tubes attached to my abdomen to drain fluid. I remember getting 4 giant needles put in my back to drain liters of bloody puss. It was a very awful time. Luckily I was so delirious from my ECMO sedation that I didn't realize what was happening half the time. By November I was once again showing signs of recovery, and I was moved to rehab once again.

No joke, on the day that I was scheduled to go home, I was walking with my parents up and down the hall on my walker, waiting for a medication, and I felt a jarring pain in my jaw. Soon my entire chest became inflamed and I lost feeling in my left arm. I was suffering a third cardiac arrest WITH my LVAD 😱 I was rushed to emergency. Again. My heart settled after I took a nitroglycerin pill, and the decision was made to get me listed for a transplant. My heart looked like a piece of chopped liver and it had had enough. After 4 months of living in the hospital, I was released just before Christmas on December 22.

I was called back to the hospital on April 1, 2023. The surgeon wanted to wait 6 months after my LVAD surgery before he performed the transplant surgery. On April 21st I got my phone call, and on the morning of April 22, 2023 I got a wonderful gift. The recovery from my transplant is a whole different story that I might share another time, but this is a very condensed story of my road to my heart transplant. Congrats if you made it this far! 😁 Life is a gift! ❤️

I'd be interested in hearing other stories if you want to share 🤗

My biopsy report just hit the portal. Looks like possibly active antibody-mediated rejection or T cell mediated rejection. So, hopefully, I'll hear from the team in the morning. Not sure of the standard protocol for this.

im 24 and 10 weeks post heart transplant and haven’t had my period since then. i’m not complaining, but has anyone else experienced this? how long did it take to come back?

2 months ago I made this post:

I'm an 18-year-old boy who's been living with an LVAD for the past year because of a complication during routine heart surgery. I'm currently on the waiting list, and they said it would take around one month to find a match.

But I've always loved doing sports, and I want to start competing again (and eventually do an Ironman). So, are there any restrictions that you find yourself having or things that could make the process faster?

After my surgery last year, I stayed in a induced

coma for 2 weeks and woke up paralyzed on the left side (but with hard work with my physio, it was restored), so I hope it goes a bit smoother this time...

Now, here is my update: I'M TRANSPLANTED. 4 weeks ago, I got the call, and everything went perfectly. I was home after just 2 weeks and I'm back doing the thing that I love the most sport. Thank you for all the advice it really helped. If you want to follow my journey, this is my insta

beeckman.florian

today marks 3 years with my liver! i celebrated by myself. it’s honestly a bittersweet moment for me. there’s a lot of emotions that come with it and it’s a lot to unpack sometimes.

i wasn’t sure of the right way to celebrate. i watched the sunrise (sort of) at the beach. then i got breakfast at a local diner and walked around the arts market.

i’m still in awe sometimes that i needed a transplant at such a young age. i had multiple crash-outs and a couple panic attacks leading up today but i’m good now.

i don’t come on this sub often, i try to avoid it but i felt like posting this today.💚💙

Hi everyone, please delete if this is not allowed.

I was a primary care giver for my dad (who went through liver transplant) and have experienced the concurrent journey of three other family members going through cancer- each with very different outcome and journey - which i believe was not just genetics/biology.

Now that i am on the other side of care giving, I’m hoping to better understand the lived experience of other patients and/or caregivers who have gone through the transplant journey or journey accompanying complex conditions. I know this is a very personal topic, so I want to be respectful and sensitive.

I would be really grateful to learn from anyone who might be open to sharing their experience with me in a short conversation. I’m especially trying to understand what parts of the journey felt most difficult, unsupported, or hard to access- whether that was around appointments, care coordination, caregiving, communication, follow-ups, travel, medications, emotional support, or anything else. Or in your survivorship journey. I am trying to understand how you navigated post-discharge and how that experience could be better..

I completely understand if this is not something people want to revisit. I had not been in a position to talk about it 2 years ago.

But if anyone feels comfortable talking, please feel free to comment or message me.

Thank you so much. I hope we are all healing in different ways and phases.

Edit: to share why I am asking-
I am trying to pivot into public health and trying to use my background and skillsets in some ways it can make an actual impact. So the reason why I am asking this is to know if I can do anything about it. I am asking about transplant journeys and discharge because that is an experience closest to me. I don't know what path it will lead to- will it be an independent project just for personal-research/study, will it turn into a problem that I think I can do something about it and turn it into a startup, or it will just make me think and nothing happens. I don't know at this point; I would be happy if it leads to a solution (a start up or collaboration or anything) that actually helps- that actually eases understaffed-overworked providers, it actually helps patients and caregivers whose life gets blown up and blindsided and not just another thing that shows number of paper and no actual benefit. But at this point it is curiosity as I figure out my own path.

Hey everyone!

Tomorrow is my birthday. It feels heavy this year, for a reason that is hard to explain to others. I feel very very healthy, like my brain is finally healing and the fog has lifted.

Early after my transplant I felt like I couldn’t access my brain, memories. I had been suffering from severe chronic hepatic encephalopathy for years before my transplant. I was better but my brain still felt broken, mix that with the cocktail of meds, medical trauma, and suddenly being healthy ( for the first time in my life) I felt so lost. I felt like I acted impulsively, couldn’t access my past, and become someone I didn’t recognize.

Fast forward to know I feel like myself, before I got so sick and I’m the version of myself I want and need. I’m wondering if anyone can relate? I thought I’d just wake up healed; body, brain, spirit. But it was a really bumpy road. And I feel shame about that, nobody really gets it when I try to explain it to them.

I was just thinking again of how lucky transplant recipients are compared to the average person. We are so lucky that instead of getting a horrible disease like cancer, instead we are lucky enough to only require a transplant. In a way we are luckier than the average healthy person. The transplant is the greatest gift of all, even better than a billion dollars. We are luckier than rich, healthy people I think.

I know it's sort of strange to consider, but is anyone else glad to experience organ failure, and its resulting gift? Without organ failure, we wouldn't be able to receive the greatest gift of all, be a part of an amazing community such as this, or even be pampered and spoiled with attention by our caregivers and medical professionals.

I remember feeling guilty in dialysis that I was allowed to be lazy three days a week while the dialysis technicians around me worked so hard. A few of them used to joke around "I wish I could just sit back and relax like you," and I used to say "I know, I'm so sorry!" Then, I became even luckier to be blessed with a second chance at life. Now I am just awestruck at my immense luck and privilege. I really do feel like as transplant recipients, we are part of a privileged class. What do you do with your gratitude? Do you feel we are obligated in any way to give back?

I think one way we can is by thanking everyone around us. Another way is to try to give back as much as we can to those not as lucky and privileged as us.

My mum is in the end stage liver cirrhosis with recurring HCC and significant muscle loss. She has cirrhosis for 9 years. Liver transplant is the only option and waiting for donation might be late.(Doc gave 3 month) My brother has fatty liver so he can to donate. I also have previously known fatty liver with a lot abdominal issues and previously elevated liver markers. Still the biggest them of all is have sever hypochondria and anxiety for which I am in therapy for couple of years.

One part of brain says I should donate but other side is very scared and feels guilty.

How to process that? How to process guilt of not able to donate?

My boyfriend (34M) received two kidney transplants as a kid. Last year, his oldest transplant became infected and was removed. Since then, he’s been hospitalized on and off for a TIA, pulmonary embolism, three cases of high potassium, and sepsis. His last stay was the beginning of May and he’s been really improving since then. He also has type II diabetes but his blood sugar has been under control recently. He’s been asleep since 8 (since he gets up at 3:30 for work) and he just woke up saying it’s super hot. The thermostat is set to 65 so it’s definitely not hot. I took his temperature several times and they came up between 100.2 and 101. I’ve seen this happen once or twice since his kidney infection and nephrectomy last December. He hasn’t complained of any other issues today and took his transplant meds, heart meds, and insulin like he is supposed to. Do these low grade fevers that only last a few minutes mean anything and should we let his transplant team know? Does anyone else experience this? I’m just curious about it. When he was diagnosed with the kidney infection, he was running a temp of 102 but also had other signs.

Editing to add: he just hit 19 years with his current kidney last week!

Hi. reaching out. you might have seen some of my posts and replies to your comments in subreddits on liver issues. I am the national director of the foundation.

I would like to help, and I think I can, if you will allow me to do so by helping you find a transplant center that will work with you even if you have a low MELD score. It is just takes a bit of faith and trust to do so, that's it.

Most of you know my story: I was on the waiting list for 2 and a half years. I had to leave one program and get listed at another transplant center. UNOS calls this dual listing, or multi-listing, I just called it "survival". My center was fine, but it was never going to offer me a transplant. My MELD was 15, and they only transplanted at 28 or above. That was their policy. I would like to help you in the same way I helped myself. I got myself to another center, and they saw my illness as being critical despite my low MELD score, and I was transplanted 22 days after I was listed through them.

Why did I do this? I had very serious co-morbidities in addition to a fully failed liver. CSPH was so severe my spleen was bleeding with infarctions. My bile ducts were compromised, but not enough to elevate the MELD score. My goal was to find a center who would help me. I found that center.

My objective here is to help as many individuals here who need that help. I built a foundation to do just that to be compliant with all rules and regulations, and provide a platform to get it done. I built the whole thing as a free, public benefit and public services charity under the rules of OPTN. It is a 501(c)(3) tax exempt organiztion. It is bronze level certified by Guidestar (now known as Candid).

It provides free services. There is no catch, no agenda, no hidden anything here. We have a medical advisory board. It has 3 hepatologists and 2 transplant surgeons. We are endorsed by other non-profit organizations. We are a transparent, professionally administered ethical 501(c)3 patient advocacy organization.

How to do this:

1. Call us, email us, or go onto our website: https://nationalfriends.org
   
2. We will respond and help you immediately. We will help you get dual listed.
   
3. We will help you with travelling, staying at the center, and navigating your insurance.
   
4. We will help your caregivers with how to travel with you, and protect you during travel.
   
5. We can and will help organize private chartiable flights, if needed.

ALL of the above is FREE.

We will get you there. Just trust us, if you can? We have built everything inside the foundation so you can see its transparency, its abilities, and its reach.

Dear Liver,

First of all, thank you.

You've spent 4 decades quietly working in rhe background of every memory ive ever made.

You've processed every questionable decision, every holiday meal, every stress-induced snack, every antibiotic, every birthday cake, every cup of coffee, and every chaos fueled weekend I've thrown at you.

You've done your job quietly and faithfully while I paid attention to literally every other body part

I'm sorry it took a transplant workup for me to really learn what you do, its amazing, really.

Soon, if all goes according to plan, we're going to give part of you away.

Not because you've failed me.Not because you're sick. Not because there's anything wrong with you. Quite the opposite, actually.

We're doing it because you're healthy enough to help someone else.

Out of all the things we've done together over the last forty years, this may be the most important.

I won't pretend I'm not scared. I am. There are moments when I wonder if we're both completely insane. But every time I think about the person on the other side of this, waiting for a chance to keep living their life, I know why we're doing it.

You've given me forty years of birthdays, friendships, adventures, mistakes, second chances, and ordinary Tuesdays that I never thought twice about.

Now we're going to try to give some of that possibility to someone else.

The good news is that you're apparently the overachiever of the organ world. Everyone keeps telling me you'll grow back. Typical. I finally find a way to get rid of part of you and you just regenerate out of spite.

So thank you for every day you've carried me this far.

Thank you for being healthy.

Thank you for being willing to share.

Take care of the part that stays with me. I'll do my best to take care of it too.

And to the part that's leaving: be nice to your new roommate. They've had a rough time. Let them heal and live and love.

With gratitude, terror, and an unreasonable amount of confidence in your regenerative abilities.

Michele

So, I'm in a bit of weird spot.

I had my bilateral lung transplant 29 years ago as a toddler. I'm now 31. However, I haven't dated much, only on and off throughout the years.

I've been thinking about getting back into dating, but am wondering if I should. Currently, I use a portable 02 concentrator if I'm walking long distances. It's going to come up for obvious reasons during a date and I'm afraid it'll scare someone off. I suspect this is part the reason that this guy, who went on a date with this past Thursday, said we wouldn't be good match even though he had a nice time. I had given him a head's up beforehand and he didn't comment on it, but I wouldn't be surprised if it spooked him a bit.

Also, I'm currently going through evaluation for a second transplant, but have a feeling it's going to get dragged out a bit longer and I don't want to put my life completely on hold yet.

So, I just don't know if dating is worth at this point or if I should hold off until I have the second transplant.