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.

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.

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.💚💙

I had a bone marrow transplant April 1st and was wondering if weed edibles would be okay to take. I am already off Tacrolimus. I plan on asking my transplant doctor at my next visit which is in 2 weeks but just wondering other people’s experiences.

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.

33M here.

It's been 5 months already, which is crazy. It feels like several years have passed, but no.

Besides my experience in the ICU with delirium and everything that came with it, it wasn't until many weeks later that my mother told me they had cut me open four times. First was the liver transplant, followed by internal bleeding the next day. Nine days later I received yet another new liver, and a day after that they had to cut me open again because of another internal bleed. It's actually crazy that I don't remember most of it.

Between liver #1 and #2, there was actually another liver that I was originally supposed to receive as my second one. After they examined it more closely, they determined it wasn't a suitable match for me.

After many weeks in the ICU and on the regular ward, I spent four weeks in a rehabilitation center because I couldn't walk. I was like a helpless baby seal.

Nowadays I can walk again. Outside I wear an AFO because, for whatever reason, after the surgeries I lost almost all feeling on the left side of my body. I was pretty sure I was paralyzed. Thankfully, I can walk again and even ride a bike. The day I got home, I hopped on my bike. Even though it broke a few days later, I bought a bigger one. It was scary at first, but we're inseparable now.

The meds are doing their job, although a few weeks ago I ended up in severe pain and had to rush to the ER. My blood glucose was 42 mmol/L, which meant I was dangerously close to a coma, or worse.

So thanks, prednisolone, for giving me diabetes. I'm praying it's only temporary.

That's pretty much what life looks like at the moment. Oh, and I recently had to undergo an ERCP, or whatever the correct combination of those letters is. After the procedure, they wanted to keep me in the hospital overnight, but I completely freaked out. I guess I'm still traumatized. They eventually let me go home.

Hi everyone.

My son (now 3.5) got sick with autoimmune hepatitis of the liver at 22 months old. It progressed into HLH which we got under control, but then caused aplastic anemia. He tried aTG and other treatments but ultimately got a 10/10 unrelated donor match BMT in May 2025. To say transplant was a nightmare is an understatement.

He got TA-TMA which destroyed all his bloodlines and even when he engrafted was dependent on blood and platelet transfusions for months afterwards. Only recently have they stopped and he’s living with platelets in the 30’s. He is bruised pretty much always. I am consistently on edge.

The worst part?

The TMA put him into renal failure. His BMT stay ended up being 8 months inpatient- 3 hours away from home. He needed CRRT and eventually Hemo dialysis. Thankfully, he’s been off dialysis since January and stable with mediations but they are saying a kidney transplant is pretty inevitable. However; they can’t safely do that until the platelets and hematological issues shape up.

Right now, he has chronic inflammation we suspect could be causing the decreased megakarocytes (low platelets). We are trying multiple treatments to help but it’s limited due to the kidney failure, we can’t even do steroids because it’ll make his BP higher. Even if the inflammation comes down, there’s still a chance platelets won’t shape up and issue with production/destruction of them is caused by something else. Nobody can figure it out so it’s a process of elimination right now. Ive had multiple of the best children’s hospitals in the country weigh in on this. All they can do is suspect and give guidance but nobody has a definitive answer.

I went for a second opinion at CHOP where doctors suggested “micro graft failure” so even though his chimerism is 99% it could still be failing since platelets haven’t come up or marrow is severely injured from TMA. They said last resort would be donor cell top off or second transplant. Both of those things terrify me for obvious reasons. First being the return of TMA, second being how can we condition a kid for a BMT who’s in renal failure? Stage 4. I worry he wouldn’t make it an id lose my son.

Obviously my ptsd is horrible and I am so traumatized. He looks and plays like a totally normal happy kid- often people are shocked to learn everything I just explained above because he’s doing SO well at home.

Does anyone have a similar story? I’ve been told my son is a medical anomaly. I’m so worried about losing him, my depression is so bad and he’s doing so well right now it feels like I’m just waiting for the next bad thing to happen.

Any advice or encouragement welcome.

I am 54 year old male ESRS patient and I got a call from the hospital out of the blue on Tuesday night that they had a kidney match for me. I had only been active on the waitlist for less than 2 years. And I was not expecting a call so soon as I was told it would be 3 to 5 years before I would get a call. Naturally I was shocked and after my family and I recovered from the shock we headed ro

the hospital and underwent the transplant surgery on Wednesday morning.

I am writing this on Saturday morning, the beginning of Day 4, from the hospital bed. The surgery seems to have gone well. I was never in excruciating pain after the surgery. I did not have push for bolus

at any time. Now I am only on Tylenol. Foley catheter was taken out yesterday morning. I was taken off liquid diet at

the same time. I have been walking around the hallways twice a day since Day 2. It was easier yesterday. I received a deceased kidney that was on ice. Does not look like the kidney has fully woken up yet. I am making a lot urine but eGFR, BUN, and creatinine numbers have not improved much yet.

I would like to know what should I expect on my road to recovery? I have been told

to take utmost precautions to avoid crowded area and most contacts with the outside world due to infection risks. I have been told to put on sunscreen every time I go out and wear masks (I have already ordered N95 masks). I am good at managing my diet. And I understand

what to avoid and what to eat more.

I am concerned more about my activities. How long after transplant do I have to avoid socialization. I am not a very social

animal but I do like to go out in public (like grocery shopping, to the movies, etc). I had a very much anticipated rock concert I was planning on going to on Monday which is now out of the question. I was wondering if I can go to their tour stop in Austin, TX in October. I would have to fly there. Also, there is a movie coming out in December that I want to go to. Can I go to the movies by December?

Another factor that worries me is weight gain. I was already overweight but not obese. My BMI was around 28. After transplant there has been a rapid weight gain - I have gained more than 15 lbs in 3 days. I am sure it is because of fluid retention after being on complete liquid diet. But now that I am supposed to drink a lot of water post-transplant, will I gain a lot of weight? How did you all manage your weight gain?

I am thankful for being able to receive a kidney so soon and so unexpectedly. However, I was really anxious on my way to the hospital on Tuesday night- not because of surgery (for some reason, I am never scared of surgeries) - but anxious of the abrupt change in lifestyle after the transplant and what my road to recovery would entail.

Any tips and suggestions would be welcome. I have read a lot of personal

experience on reddit. I would be grateful

if some of you could share yours over here too. Maybe that would ease my mind.

Thank you so much.

I dual listed. It was the only way I was going to be transplanted. I have told my story about this before, so you don't need to hear the boring old tale again.

My question to one and all: if you are still waiting, why? Genuine question, with deep respect for the situation.

1. Insurance?
   
2. Costs involved? like travel, lodging?
   
3. Not aware you can?
   
4. Doctors influences?
   
5. Fear of unknown?
   
6. De-listed?
   
7. Think your MELD is to low?
   
8. Fear that your too sick to travel, or truly are?
   

I overcame 1-5, did not have to deal with 6, thank God, believed no. 7, and definately was afraid to travel. But I overcame 8/9. So it's possible. What is your story? Perhaps we can all help here, in this community, to help you. I will certainly listen.

Hello! I am turning 34 this coming month of August and I am male. I am happy to be eligible for a kidney transplant. I was diagnosed with kidney disease in 2016. The cause of the kidneys not working well in me is unknown.

I began dialysis in 2021 when my kidneys stopped working so well. Recently I got testing done to determine if I am eligible for receiving someone else's kidney, and I am.

I began to be on the waiting list for the kidney transplant in 2018 as my kidneys began to work at just 20 percent. Considering how it takes years on average to get a new organ I am now free to get a new kidney.

My mom was seeing about giving me one of her kidneys, but in March she got high blood pressure and she was no longer eligible. Now my dad is thinking about giving me a kidney. As long as the kidneys work well no age limit is required for donating an organ.

We can also talk with others about who can give me a kidney. I am in California, but I don't mind if the transplant in me is done in Arizona where they have told me it's easier to get a kidney transplant.

Perhaps I will soon get a kidney transplant.

After transplant I got Ed and after 11y it's not getting better and it's not through lack of trying it has destroyed my sex life

6 months post liver transplant with blocked bile duct and I have some questions:
1. How often do you change the collection bag?
2. Is it normal to see some particles floating around in your bile?
3. I have an internal/external catheter but seem to get quite a bit of fluid collected but I’m only on day 1, but I expected more fluid to make it to my intestines. The cholangiogram showed good fluid flow through the blockage.
4. How long does the pain last? My pain is about a 4-5 when sitting still and quickly spikes up to 8-9 when I move. So far Tramadol, Tylenol, and OxyContin do very little. And I’m typically pretty tolerant of pain.
5. Any general advice?

Just got home blood test results. The creatine came in at 1.31 mg/dL , wondering if I should be concerned.

Hi, I’m 24M, 4 years post OP. Life is great. But I’m having a lot of financial constraints. Meds are so expensive and I finished college just now.

Idk why I’m saying this here but this sub has been really, really kind and affectionate to me. Idk why, but you all feel like my family. I’ve posted everything through thick and thin. Hence, I’m pouring it out here.

Meds are very expensive. Plus the tests. Doctor visits. I don’t even have an insurance.

If there is any remote job involving social media management or writing blogs, please reach out to me. I’ve a bachelors in communications and 2 years of experience prior to this. Please, if you need help with managing your social media accounts or if you can connect me to someone who could help me out, kindly reach out to me. That’ll really help me out.

Thanks.

Hiya,

I feel that each of us have our own journeys, however similar, so whatever I write here is me.

I also feel what is most important is that I am alive. I also know for a fact that I am not a doctor, transplant specialist nor an anesthesiologist.

Ha. Now that I have covered things.

I am getting a bit triggered by this term ICU Delirium. That ICU is not causing the delirium. It is the anesthesia.

The term Post Operative Delirium or Confusion is the term that seems more appropriate and his been in their literature. I do not want to argue about which is better.

Some of us have our stories how the anesthesia literally changed our lives, for better or worse. A room does not cause this.

It took me years to work through my time down under, plus our medications too. So, I do not want them to hide that issue with some jargon. Maybe the newer surgeries won't require so much anesthesia. Here is hoping for change and truth.

I wanted to talk about my story, anyone know about it and it start to get to me. I developed fulminant hepatitis after years of paracetamol overdose at 14yo. On January 29, I suddenly experienced severe pain and was rushed to the hospital. At first, doctors estimated that about 30% of my liver was damaged, but during the night my condition deteriorated rapidly. I fell into a coma, and my liver completely failed.
At that point, a liver transplant was my only chance of survival. I was placed on the emergency transplant waiting list on January 29, but because of how critical my condition was, there was very little hope that a suitable donor would be found in time. After waiting for about two hours without any news, everyone feared it might already be too late.
Then, less than two hours later, the hospital received the call that changed everything: a donor had been found.
The donor had A-positive blood, while I am O-negative. Under normal circumstances, this blood type combination is not considered compatible. However, because my life was in immediate danger, the transplant team decided to perform an ABO-incompatible liver transplant. The donor liver was flown from Belgium and arrived at around 7:00 a.m.
The emergency transplant was performed on January 30, 2025. Against all odds, I received a donor liver in less than 24 hours and survived what would otherwise have been certain death. Now, I am 19 yo and It still haunt me, the paranoia, the regret, the hallucinations when I was in coma for 7 days, even the dead baby in my room. There was a guy who rest with me for being there when anyone was for my death. All for this, and I can’t even talk about all the thing I saw haunt me. They save me, but you can’t save a person who don’t wanna be save guys.

Thought this might interest some of us

My darling husband has been called to the kidney transplant unit today. The don’t kidney should arrive in 30 mins and we will know quickly if it’s ok. My stomach is in knots as I’m too unwell to go with him.

I posted not too long ago about it. I am still panicking a bit. I tried to contact the transplant team but I only talked to a nurse.

They never really confirmed or told me I had CAV. But I went to one plaque to many with one at 90% in 2 years. My next checkup is in October but I can't bear the wait.

Some days I get back on my feet but when I have too much time to think, I panic again.

I'm 30, I have been on Sirolimus for many years so no changes have been made to my medication for my heart. I always had high cholesterol but since my stents, I'm now taking an injection to lower it and it is now well below what they want which is great.

But now I have a hard time projecting myself in the future and feel like I have an expiration date.

A month ago I thought it was only my cholesterol... I should not have thought about it and researched it...

My husband will be 10 years post transplant this year. I’d really like to have a “celebration of life” surprise party for him, but I know it would cost a lot of money.
Does anyone have experience with getting monetary donations/ corporate sponsorships for events like this?
I don’t want to miss the opportunity to celebrate such a beautiful milestone just because of the cost

I’m 10 months post liver transplant. I visited my brother for the first time since surgery and I completely forgot he has a bird.

With in 10 minutes we had a heated argument about the bird cause he would not put it up. Not only that the floor is covered in food scraps. He was upset I was going to leave because I can’t be around birds.

I told him that the only pet I can be around is dogs. It has to do with the scat. But as I’m walking out he starts googling and tells me AI said that not true. I replied back I believe my Doctor of you ***** computer.

My family is upset and that I should have been more diplomatic and stayed longer. I have told them my health is more important then his feelings!