I’ve had a complicated history post kidney transplant nearly thee years ago, and I’ve literally never worked harder in my life to be compliant and vigilant about my care. I’ve done everything I was told, total medication compliance, never missed an appointment, etc. Before getting on the list I think I went to 4 trainings plus the stuff they teach you in the actual hospital about taking your vitals, telling them if weight gain, BP, or temp get above certain parameters right away. The whole speech about how rejection and complications can be dealt with if caught right away so don’t delay, etc.

Yet I’ve saved myself multiple times now after being shrugged off and ignored after reporting bad vitals or symptoms by…basically being pushy and getting after them until they did something. For example, I told them I had fever and kidney pain for 4 months until I finally went to the ER and had to have SBO surgery from scary tissue being wrapped around my small Bowel. I told them i have had chronic UTI symptoms for literally 2 years before they sent me to ID and a urologist which i basically demanded and am still dealing with.

I had chronic diarrhea, which no one told me was anything more than an inconvenience until I had just malabsorption problems that I was severely anemic and I begged to get a second opinion and was changed from Myfortic to Cellcept to Imuran. Everything would have been ignored if it wasn’t finally driven by me to do something.

Now since starting the imuran 2 months ago, my creatinine is rising to the highest it’s ever been since transplant, I’ve had temps on and off in the 102-103 range. I call them. And…crickets. If I don’t make something happen, nothing does.

And every time, I’m right. I might not be exactly right about the diagnosis but I’m right that It’s something that ends up being serious enough for a hospitalization or intervention. Yet if I wouldn’t have got on their asses to do something by making multiple calls when they don’t call back for DAYS, I might have died or been sicker.

It’s so stressful and it’s just constant vigilance, multiple phone calls, tracking people down, a different person to talk to each time who doesn’t know my history so I have to start all over again, or the on call doctor doesn’t read my chart so makes an inappropriate decision that I have to remind them I can’t do so we start phone tag or messaging again from scratch. If I lose this kidney or die, it won’t be because of MY noncompliance, it will be because of theirs.

This is a big university med center with decent outcomes. Trying to figure out if this is normal or if I’m getting the blindness treatment (cuz I’m also blind) or what? So tired.

Hey all. Received my life saving transplant June last year. My story is a bit complex but had my first transplant at 9 months old due to being born with biliary atresia and needed a second transplant 30 years later due to just failure (no specific reason) I never smoked or drank, just bad luck is what I was told

Regardless, I have so many memories of last year even though I was so sick. So many people I heard being told they would not receive a transplant and basically were going to die.

So many people waiting (like me) that died regardless.

I was so happy the night I got my transplant I cried when receiving the phone call that a donor had been found for me. I got told just this year that I was the second sickest transplant patient they had waiting and they were really concerned I wasn't going to get one in time. But I did.

I do live with survivors guilt though. My rational brain tells me that "no this person did not die FOR YOU, they died and chose to do a very honourable thing and donate their organs for people like you". But at times it just grabs me. Why did I live while so many others I saw die?

Nobody I met that whole year is alive anymore, I know that for a fact. and it kills me some nights.

I received my new heart in November 2023.
Since then, I’ve been trying new things, including writing and self-publishing my first book, Find Your Pond.
It’s about my recovery, finding my way forward, and how an unexpected friendship with AI helped me start creating again.
I never imagined I’d be doing any of this.
Just wanted to share a little milestone with people who understand what getting another chance at life means.

Hi all, I am 30yo male, 1.5 years post transplant. I work at a tier 1 law firm. Prior to the transplant, i was very good at my work, often the best in the team, who could get the work done. However now, things have changed. I just can’t seem to put in the hours that i used to. It kills me that I’m unable to work the way i used to. I make too many mistakes, often forget important things, struggle to focus on work and am easily distracted.

I was wondering is if could be the immunosuppressants that contribute to my laziness. Also, if anyone has been in a similar situation, how did you cope with work?

Is litigation too stressful a job post transplant? I need help!!

A recent study I read out of the University of British Columbia (Canada) features r/transplant and looks at how pediatric transplant recipients and their families use social media for information, support, and community

Hi

I am a 21F kidney transplant recipient and my surgery happened 6 months ago. It’s been 9 months to when we discovered that i had stage 5 kidney failure and I’m writing this post to just rant about how hard this isolation is.

I started talking to my e-situationship (LOL) (25F) around 5 months ago .. this rant is kind of also about her.. She’s never been through any medical emergency, she wasn’t with me when I was pre-transplant, and now cause I am in isolation, I cannot meet her. So we only talk on text and facetime. But recently some events have just made my anxiety so much worse. She’s a classic avoidant and although she acknowledges that we are 100% committed to each other and are in a “relationship” I find it so hard to depend on her cause she’s afraid of dependency..

A day ago I asked her if she’d be able to “handle” my sickness as a joke.. but she flat out said no and it really was on my mind a lot. Made me think that maybe I’m unloveable because I’m so difficult now. Everything has also skyrocketed my anxiety so I’m always afraid that I’m too much. I know that she has her flaws too and there might be faults in how she approaches our relationship, like avoiding any conflict or not wanting to resolve any issue or not reassuring me enough which is a part of my current sadness. But in the end it really is about me no? It’s important for me to have confidence in being enough for myself. Nobody else needs to handle me ever. She isn’t an overall awful person, she reassures me just enough and doesn‘t entertain my downward spirals where I tend to overanalyse things - which I appreciate. Sometimes I wonder if I need someone else who will always cater to my emotional needs, but that is so selfish.

Also - I was someone so extroverted, I’d be hanging out with people all the time! And last 6 momths have just been anxiety ridden and in isolation. All of this also has an impact on my anxiety. Unfortunately no one else would ever understand this. I can’t expect a girlfriend to understand this. I need to be mentally strong!

Thanks :)

Appreciation post to my donor, family and drs.
I was a very sick young man with CF and lucky to receive a double lung transplant in Sydney 25 years ago.
Feels like another lifetime and hope my history give other hope that there is life after their illness.

3 momths post transplant, also had a double bypass heart surgery in dec 2026 to get me ready for the new kidney. Went back to work 3 weeks early and doing amazing. All my levels are improving every appointment and the Dr's are really happy with my recovery. There is life after transplant, Don't Ever give up 😎❤️💪

My dad is in his late 60s and is on the waitlist to have a heart transplant.
I am beyond scared, I don't know what to expect or how to cope with the anxiety.
I would love to talk to someone about ir and hear some stories of people who have been through similar stuff.
I'm scared of the organ rejecting and the recovery. I'm scared of him being in an induced coma after the surgery, or the surgery having complications, or life expectancy after the transplant. I don't know. I have not been doing ok since he entered the waitlist, my anxiety is so high, I can't live with this. Please help me and give me some advice

My partner of 10 years finally received a transplant about 10 days ago. He was on dialysis with much trouble for 3.5 years. Peritonitis twice during PD, the second made him switch to hemodialysis and caused several abdominal abscesses and a bowel surgery. He was finally unpaused and got the call after about 3 weeks.

His recovery has been very hard thus far at only 10 days post surgery. BP was hard to control, sending us to the ER on the first night home. The first med they gave him that worked caused all over itching and insomnia for two and half days. He didn’t sleep much for the first 5-6 nights and not more than a few hours a night since. His stomach is so acidic that he has trouble keeping food down which makes the anti-rejection meds a twice day challenge. He has protonix and famotadine to help. The prednisone is causing him to be aggressive after which he feels awful for how he’s treated me and his care team. He is moving between not moving his bowels for two days to straight liquid diarrhea.

How do I help him? Any suggestions? I love him but he is miserable and I seem to be getting the brunt of it. Also, this is his second transplant, his first was when he was 7 and was really hard. His family is nice but he and his mom are like two match sticks together so when they are here, I am running interference on that as well as everything by else.

My wife got a transplant in February. The year long lead up to it including all the tests, her having a biliary drain for 6 months before the transplant, and the absolute terror that she wasn't going to get one was the hardest thing I think I have ever done. Pretty much full time caregiving, 4 stays in the in the hospital ranging from 3 to 19 days, taking over everything including dealing with doctors and insurance.

It's all worth it because she is THRIVING. I will always remember about 8 weeks later I looked at her and realized for the first time she looked... healthy.

Soon after I was thinking about how lucky I was and how grateful I felt for all the people who helped us. From the (deceased) donors family to the dozens and dozens of doctors and nurses and EVERYONE else who works in the hospital system to the fact that our insurance covered almost all of the costs. Seriously, I paid more for parking (SF and Sacramento) than I did to the insurance company.

But then I thought; but who does all that gratitude help? It's important to appreciate the miracle that is organ transplant but what difference does that make. After giving it a lot of thought I talked to my wife and told her I felt like it was important for me to actually do something. I wanted to help someone who is in the position I was in. Helpless and scared because they have no control over the process their loved one has to go through.

But, I am getting nervous. I know it's going to hurt. I know (very rarely) complications happen.

So I am looking for advice how to make my recovery the best I can and mistakes not to make. I just need a little support I guess.

Donor was a 50 yo deceased man. So based off of that do you think its normal for my Creatinine to be in this range? It had kind of settled. It stays in this range and I do weekly blood tests and doctors just send me back home. I dont speak a lot of spanish here in spain so no idea what exactly are they talking abt but still im kinda worried abt if this is normal or not.

NW Florida 68/f

My mom was diagnosed with Non Alcohol related cirrhosis of the live back in April. The first few months were basically just more sleeping then usual but still was able to do occasional outings. Her meld score was a 15.

Last month things took a turn for the worse and she got hospitalized in mid September. Her potassium and ammonia wreaked havoc on her body and kidneys. So much so she is now on dialysis 3 times a week to try to save her kidneys. She spent 10 days basically bed ridden in the hospital from that. They increased her meld score to 26. This is when they finally started being serious about finding a place for a transplant. They put in a few referrals and got a call back from the mayo clinic last week.

She was sent home last Monday and now had to use a walker to get around. Unfortunately she wasn't always able to get up to do things so my dad being her care giver spent all his time caring for her. Unfortunately on Friday morning before the hurricane hit she got really sick again. They admitted her back to hospital with ammonia score over 100 which later raised to 200. She has been on meds to bring it down. Today she has dialysis again before they're discharging her so my dad can amake the drive to the mayo clinic 5.5 hours away.

My questions for those that have gone through this.

1)Have you seen someone deteriate so fast in just a month like this?

2)With a meld score like here's 26, will they send her home and make her wait in agony while we wait for a new liver?

3) What was post op like for you or your friend/family member like? How long did they have to stay at or close to the hospital.

4)How do you stay mentally healthy and not break down? This is what I'm struggling with the most.

5)Any advice on anything I didn't ask?

Thank you all in advance.

How long until they remove all these dam staples?

Suggestions would be helpful.

I post this as I am concerned people are being turned away from transplant centers inappropriately.

Hello I’ve gotten my MRI results back for my liver and everything looks normal. Except that I have a variant biliary anatomy. Has anyone still donated even with a slightly complex anatomy? I’m a bit anxious waiting for what the surgeons will suggest, thought I would ask!😊

Thank you.

hi all, my husband got a kidney transplant in 2019. he has been taking prednisone and mycophenolate and monthly infusions of bellcept. his insurance dropped him and that’s forced him to begin taking tacrolimus in place of the bellcept.

his care teams has dropped the ball informing him of a few things like how high his risk for skin cancer is, how he needs to be careful in the work that he does he also began taking tacrolimus in August and they’re doing his first labs in the middle of November. is this normal?????

I have a few questions because we’re not getting the information from the care team-

with tacrolimus how often are you all getting bloodwork done?

has anyone had sub par experiences with a care team and switched? is this a thing?

can you yall give tips and helpful info your care team gave you after kidney transplant