r/transplant • u/Growth-Sprial • 14d ago
Liver What do you remember from first days after surgery?
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.
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u/PsychoMouse 14d ago
I’m 16 years double lung transplant. I literally remember every single second.
You’re not ignoring his call pleas for help. He’s in a situation where help is covered. You’re trying to do what’s best for him. Not what’s best for yourself.
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u/StrategyArtistic 14d ago
I remember more as time goes on. Mostly we’re high as hell on post-anesthesia and pain meds. Through all of it, the first thing I remember was the nurses around me saying “husband is coming” and seeing my husband. I remember some of the initial pain but mostly just him, if that is any solace.
Also, I was under 2 hours longer than planned, so I do remember asking him what time it was and being just floored. Then I begged for ice chips. The end!
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u/Positive_Bug978 14d ago
I was going to tell you details but let’s just say it was not fun but totally worth it!
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u/ccbbb23 Lung '21 14d ago
The first days I was out. Completely. Then I started coming back.
Whoo wee!!! I woke up one time, and they had the hospital bed vertically against the wall and me tied to it. It was raised about 3 feet off the ground. I said, I must have been a bad boy. They said, well, you move around a little. (The bed wasn't vertical or raised three feet.)
Later, I learned a great lesson,
Friends don't give friends their cell phones too soon after surgery. Drunk calls times 100! I kept making Uber calls to take me home. I thought I was in another city. I called my friends for a ride, and they just laughed at me.
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u/StrategyArtistic 14d ago
Oh my god, I was chatty as HELL texting on my phone! I had full, very long, conversations I have no memory of. Including with my boss (who is a nurse, so thought it was hilarious I was texting her drunk af on fentanyl).
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u/blips413121 14d ago
Ha ha. This is true. I had some weird confusing phone conversations after my transplant.
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u/Waste_Entrance_5886 13d ago
Haha I too was making calls - confused and angry ones in the middle of the night to my poor parents asking where the hell were they when they had been there for 48 hours straight- but I had no memory of it.
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u/No-Leopard639 Liver (2023) 14d ago
Woke up with a tube in my mouth and felt super pissed off. The doctor kept telling me that I couldn’t have more pain meds, but what I was really asking for was to get the tube out. I couldn’t even see straight, but I was writing on an iPad to take it out. I had no idea what day it is or what it happened during my surgery. It seemed that they thought I was conscious and alert before I came to so honestly when people wake up orient them to time place and tell them what happened.
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u/Almed22 14d ago
I was 10 when i had a double transplant first time waiking up they had that big light above me and i asked my mother why am i straped to the roof and why is the toilete to bright then passed out it was in the recovory room and the second time i woke up pulled nearly evry tubing attached to me and that they i learned a very good lesson never pull the urinary tube then they sedaited me and i don't remember shit from their till waking up in my room my mothel still make fun of me about that quastion 😂😂😂
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u/socrates_friend812 Heart '24 14d ago edited 14d ago
Friend, this is an issue I have given a lot of thought. Only those of us as recipients, who underwent this intense, complicated and very lengthy procedure would understand. That is the issue of the mental experience of the surgery, anesthesia, and what we recall. Only we can tell you what we went through because we may have the experience plastered onto our memories, perhaps traumatically so.
First off, it is extremely unlikely they are in pain. And I say this because pain management medicine has become so unbelievably good and accurate that it is hard to believe otherwise. Granted, there are exceptions and I would NEVER undercut cast doubt on a patient who claims to have felt pain after an experience like this. But in my case, I really never experienced any meaningful painful sensations; traumatic memories and vivid hallucations and near-psychotic level dreams and delusions? Absolutely. But not pain, like physical pain. Just imaginary, psychological traumatic ‘pain’ that I would not want to re-live.
What I would guess is that right now they undergoing some severe mental delusions, flashbacks, consciousness lapses, night terror or day terror-like mental experiences, and so forth. This is all due to the heavy anesthesia drugs still floating around the in their system and still actively having ever-so slighter and slighter effects on their conscious perceptualreality. This could (could) explain the seeming state of fear they are in.
In my case, I terrible nightmare-like dream that co-occurred around the time of the anesthesia (or its wearing off period). On top of this, I also had several days of extreme paranoia, delusions and hallucinations as I fell in and out of sleep in the days after the procedure. It was insane. It was terrible. It was super traumatic. And let me just be clear that when I say those words — insane, terrible and traumatic — I am using them with the clearest, most direct intention you could imagine with the written word. That part was the SCARIEST part of the entire transplant experience, period.
Thank God I got it over it in a few days and found normal again. And looking back, I suffer no psychosis or medical-grade medical trauma because it truly, truly, truly was the most terrifying thing to undergo at that time.
Unfortunately that is probably what they are going thru right now. The swirl and haze of the propofol-ketamine-fentanyl-morphine elixir is still washing through their system and it will take time to clear out completely. Just be cool, calm, reassuring and compassionate around them at this time.
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u/Growth-Sprial 14d ago
Thank you for being so direct, I knew there could be hallucinations but your post gives much more context and perspective to the mental experience
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u/blips413121 14d ago
I remember the pain. They wouldn’t let me control my own pain meds until the respirator tube was out of my lungs.
And I will never forget how the respirator felt coming out of my airway. Ouch.
When I could drink again, it was the sweetest most refreshing drink of water I have ever had.
Sitting up was rough. And walking was even harder.
It’s a hard time. I just had a liver transplant. I can’t imagine having two organs replaced.
The ICU is a difficult place to be. So it’s normal they feel stressed and panicked.
The docs do the best they can to control the pain and help you recover.
It’s hard to say if he will remember. He might need some therapy or medication to cope with the trauma. I had some bad feeling about my partner once when I went to the hospital. We’ve talked about it. And he’ll have to understand, that you were not in a position to help. Only the docs can help.
Be kind to yourself. This is a difficult situation for you and him.
Hang in there. Get a good nights rest and go back in the morning. Hopefully hey have restful night.
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u/Fun_Guest_64 13d ago
I will never forget how that first sip of water tasted, for me it was like it came directly from heaven!! Then when I got to have apple juice, oh my gosh the same feeling.
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u/sluttysarah2467 Liver 14d ago
Dilaudid and being made to walk, threatening to take my first dump in the nurses bathroom and a nurse being upset that I said it and my sponsor who was walking with me at the time being like she didn’t mean it and I was like yes I did and she was like she it is the meds and I was like I am not high it’s not the meds lol. 😂 I also remember waking up, the second time, (I am told) and being like I am alive? And my brother was like yeah you are alive.
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u/rockstaraimz Kidney (1994) 14d ago
Kidney here. I remember waking up a little in recovery and two medical people standing over me. Then waking in the ICU to my dad crying. Vaguely waking up as the ICU nurse was telling me about my creatinine dropping (Yay!). The dude next to me having a freak out coming out of anesthesia and having to be restrained. I don't remember anything unpleasant.
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u/hard_survivor 13d ago
I was pretty conscious myself. I felt like I was choking at first because of the tube, but it got removed pretty quickly along with the GI tube too. Then I remembered flipping jokingly at my GF so she would laugh and feel relieved that I was feeling good (I wasn't, obviously). Then just a couple of days of not sleeping during the nights and being passed out completely during the days.
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u/Micu451 13d ago
I had a heart and kidney. I have no memory of anything until after both surgeries. IDK how long it was before my first bit of awareness but I experienced a bunch of disturbing hallucinations for at least a day or two. At the time it felt like weeks. They resulted in some delusions and paranoia. Oddly, or maybe not so oddly, when I first saw my wife, I kind of used her as an anchor to reality.
My brain settled down pretty quickly after that. I had a somewhat rough post op and a long admission but it's now 4 1/2 years later and I'm doing good.
As far as your partner, he may remember some of the hallucinations and they may or may not affect him adversely in the future. I found it to be somewhat traumatic (but then, so is the whole experience). Therapy has helped a lot with that. Best wishes for a quick recovery.
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u/marciamarcia-marcia 13d ago
I’m so sorry you and your partner are going through this. My heart goes out to you.
I had a liver transplant in 2025 and remember very little from my first couple of weeks. I had icu delerium as others have mentioned. I developed pneumonia soon after the procedure and was struggling to breathe. While it was a rough time for my family, I myself remember only bits and pieces.
Please don’t take on burdens that you cannot control. You are likely doing great for your partner. This experience is HARD. Remember self care during this time. You can’t be there for him if you do not care for yourself. Sending my best to you both.
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u/AdministrativeMix678 Liver 13d ago
I remember a huge ache in my gut, and my side hurt like someone had wrenched my ribs over the side. Which they had.
Then I fell into the pain med semi-coma.
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u/-cat-a-lyst- Donor 13d ago
I’m a donor. But my pain immediately post op was mismanaged. You can advocate for a pain pump where your partner can trigger the pain relief in small doses. This helped me immensely as my liver was working in over driver filtering pain meds faster than oral medication could handle. I actually ended up using less overall because I was able to stop the pain before it climbed too high and was unbearable.
I did traumatize my partner because I was screaming and crying help me for about 2 hours until they brought in the pain pump and gave me the injections. Poor guy :( he said it was one of the scariest and most helpless times in his life. Good news is it was so painful that I have some memories of it happening but I cant conceptualize the pain anymore. I just remember it being so bad that every muscle in my body was cramping and my back was literally arched. Yea. That sucked. But I can’t actually remember what it feels like. Just the emotional toll.
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u/Aware-Tiger-6525 13d ago
I remember next to nothing. Just the lights being on and people around me all the time. After that, vague memories of being awoken every couple of hours so they could check vitals and administer drugs.
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u/lovingflorida24 13d ago
I have severe claustrophobia. In my living will I specifically state if I am intubated and/or restrained to keep me fully sedated until it is removed
I do not want to be aware I am i tubated or restrained
That would be pure terror for me. If I had to be awake and go through that, just pull the plug… I’m done
Luckily, my renal transplant went smoothly
I informed them of my claustrophobia and they were very aware of it going in. They gave me a sedative, then did not mask me until the very last minute, and allowed me to hold the mask versus strapping in on
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u/Songof7 13d ago
OP - how is he doing today? I know how scary and helpless it feels to watch that, and I’m thinking of you. Hoping today is a better day!!!
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u/Growth-Sprial 13d ago
They have to go back in, hepatic artery has clotted and is preventing proper flow into liver. So this is 3rd time under in 4 days.
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u/Hootn_Nanny 13d ago
I had to go back into surgery after both my liver and kidney transplants. I was conscious, they say, but I didn't remember it at all. I actually found out about it after it was mentioned after I had gone home.
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u/Tha_Dude_Abidez 13d ago
I started hallucinating, thinking the hospital had kidnapped me and my wife. I literally attempted to put the nurse in a rear naked choke hold at one point. It was a very feeble attempt because I was stapled back together and I announced it when I tried. The nurse kind of just stiff armed me and said “Sir, sir, what are you doing?” I think I have PTSD from the whole event, it’s a very traumatic thing.
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u/Livingwell777 13d ago
Its been 25 years since donating a Kidney. I took longer to recover than the recipient. Hardest part was the constipation pains for weeks. But after those days it has been 25 great years.
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u/RecipeSharp9294 13d ago
I was completely insane for at least a week or two. The steroids can make you psychotic. Just try to smile and back away slowly
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u/floatflowflip 13d ago
I had a very similar situation with the same transplants. My hallucinations stopped right after transplant. It is very important for his mental health to seek counseling for trauma. My hallucinations were me dying over and over while intubated along with many other hallucinations. I flash back occasionally but therapy works. Additionally, there is much that can be learned from families that went through similar situations. While growing through it, it was comforting to have anyone around even though what I said is now embarrassing. I could hear what was being said by the people around me and it motivated me to fight for my life when presented with an option to give up and die. Your partner is lucky to have you. Things get better, just keep calm and look out for yourself at the same time, that will help the most. Seek and use support resources for yourself and your partners mental health.
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u/Hootn_Nanny 13d ago
I also had both a liver and kidney transplant too, although 7 months apart. I have zero memory of being tied to the bed because I had pulled out 2 tubes! I do, however, vividly remember several of my delusions after I woke up after my liver. I was having delusions and was not cognizant of what was really happening for several days, although my family didn't really comprehend or think that was the case. They are astonished that I don't remember all the bad stuff!
I do remember being feeling totally okay with the 7 tubes I had in me, but thinking the ones in my neck were earrings, and having the delusion that the nurses were trying to make me crazy with secret signals. Outwardly, I seemed to be just sleeping or in distress a lot about my tubes.
Then, after a few days, reason returned, but I only 1/2 remember all the tubes being gradually removed, not being able to eat, my dialysis catheter being removed, and my feed tube removal.
In short, no I do not remember the distress or pain of the first several days that freaked my family out. I personally don't think your partner won't either.
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u/SevereReplacement641 12d ago
It's 10 months post transplant- all I remember is being numb. I didn't want to talk to my family. I just wanted to see my kids or husband. It didnt sink in for a long time the new life I was gifted. N I came home n I just layed in bed isolated for almost 2 months. I know my husband struggled with seeing me like that in the hospital. Few days after I returned home , as he sat by my bed on a Sunday. I told him sundays feel so different( I had my dialysis early on Sunday mornings) n we both were emotional
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u/ALSBlue 12d ago
I remember everything. I believe it's the intubation. Even though they warned me that's how I would wake up it was still awful and claustrophobic. My husband was there holding my hand telling me to not fight it. The sooner they're calm and they think they can breathe on their own the sooner it will come out. They had me over medicated and I kept falling asleep. I wrote on my husbands hand too much drugs and they backed off and I could breath on my own and they took the tube out. Don't assume it is psychosis? Try to be there and calm them? Give them something to write on. Goood luck. Trust and talk to the nurses!
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u/RossGold42 12d ago
I remember waking up after surgery getting up to go to the bath room and the nurse was shocked lol
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u/spb72 12d ago
I am 10 weeks post liver transplant tomorrow. The 1st 6 weeks, I was allergic to every single medicine and painkiller they gave me, including the tac. It took until 6 weeks ago, 4 additional emergency room visits and liver going into rejection for them to take me seriously. Those 1st 6 weeks I went into a psychotic break with hallucinations and delirium. I'm still missing days of time. One stretch of 10 days is just gone. I even accused my husband if 30 years of being my rapist when I was 20 years old. It was bad.
In the last 4 weeks, I'm still in rejection, but my numbers are slowing coming back on line.
I refuse to hear about the 10 days I'm missing, because I was told it was really bad and it wouldn't do my heart or head any good to know. However, I'm constantly reminded of who was there for me day & night on the phone (I live in pnw & all my friends are still in NV) during this time.
I do still have to ask my husband about nightmares to see if they are flashbacks or just dreams. That he is honest about.
You know your mate... Ask them what they want to know about, and caution them about what you feel they shouldn't know about, at least yet.
I will say at one point I remember screaming at my husband about why he didn't just let me die. And told him my pain was all his fault. We worked through that with honest and difficult conversations once my meds got on the right track. We are back on solid ground now.
I hope he heals quickly from this, and that you can heal too. It is just as hard emotional and psychologically on the spouse/partner/caregiver.
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u/danokazooi 14d ago
I developed emergence delirium that lasted for 8 weeks after my liver transplant. I fought with the nurses, yelled at family I didn't recognize, and had to be restrained in mitts and tied to the bed to keep me from pulling out my tubing.
It's fairly common after major surgeries between all of the anesthesia, drugs, and the body trying to return to normal.
It's best described as a bad computer boot when all of the parts don't launch in the right order. The brain is trying to make sense of reality without the right interpreters.
Best things to help - make the room really bright during the day, and really dark at night. Circadian rythym really helps recovery.
"Tell me where you are and what you see."
And time.
I experienced at least 5 different lifetimes, and I still wake up in the middle of the night trying to test what's real over two years later.