After a long slow decline the past 10yrs from HCM my dad is going under for a transplant tonight.

This process has been quite the ride.

Not sure if this is something the sub is interested in, but on tiktok there is a guy named voidonly that is in the hospital for a lung and heart transplant. He had a dry run recently. The outpouring of support is amazing. I've got nothing to do with him other than I'm working on getting on the transplant list myself.

If any of you have tiktok accounts, go show him some support!

Hey all,

So in the next year or so, I will be undergoing a dual heart and liver transplant. I was born with HLHS and developed FALD over time, and now having cirrhosis etc, Ive deteriorated enough that it’s time for a parts swap. I’m 31M fyi.

I’ve only recently decided this with my doctor, so I have some questions (will be talking to them as well obvi). I’ve read that being as fit as possible before transplant is good for both the procedure and recovery afterwards, have people found that to be the case? What other things can I do to prepare?

What does recovery look like? How long? All in the hospital or? Just curious about how everything works and how I can best train and prepare for the most optimal outcome and such. Any information would be amazing. Thank you!

I was wondering if anyone else has issues with headaches or if I should be concerned I am having headaches everyday... I will be 2 years post liver transplant in October. Currently on tac and azaTHIOprine.. Anything would be helpful.

I had a Heart Attack a few months ago that did some permanent damage to my left ventricle. I had an AVR in 2018. And I've had a few issues since then (ablation, cardio version). After my heart attack my Cardiologist had me get a Cardiac MRI. When we read the report it said I had an Ejection Fraction of 40% in the upper part that has all the measurements and readings. But in the summary at the bottom it said I had an EF of 11% Not sure why? But anyway that got my doctor and us all excited! Talking about Heart transplant, or LVAD. So he transferred my care down to Swedish Hospital in Seattle that does those procedures. The thing I wondered about is that I still felt pretty normal so I was thinking that the numbers had gotten swapped in the MRI report. The Dr at Swedish was great and had me do an Echo down there and that showed my EF as 40% YAY! SO I am relieved at not needing a transplant or LVAD. But we did lots of research in the meantime. I kind of felt angry at the place that did my MRI. Because we started making plans on selling everything we had, maybe having to move, etc. But I figured things happen and fortunately things turned out ok (for now)

Hi kidney warriors.

Some info, male in my 30's dialysis for 2.5 years before transplant. Chronic kidney disease since birth.

I've recently crossed over 15 months since my kidney transplant. From a medical standpoint I have done exceedingly well, bloods are good, no rejection episodes and I count myself fortunate for that. However I'm finding the mental side of the transplant game exceedingly difficult. My current meds are 5mg Tac, 5mg Pred and 250mg Mycophenalate (plus bloody pressure meds and Mirtazapine 30mg at night) Over the last year Ihave had attacks of overwhelm and panic where I just get crazy emotional and feel like I can't go on.

I wake up every morning with anxiety, I find walking my dog helps ease this. I was working pretty early after the transplant but now I have had to step away due to the worry. I find I hate being alone and struggle to be in my house when my partner isn't home. I don't like being on my own because that's when my mind starts to wander and I have struggles.

I find my mind replaying episodes of memories i processed over 10 years ago but they shock me to my core now, some memories from when I was as young as 5 years old. It feels like I can go from steady to extreme distress in 5 seconds. For some reason I am totally numb to the dialysis and transplant. I believe my mind is replaying really old memories to stop me thinking about the last few years.

I am seeing a therapist and have some better days than others but the down days are so scary and it's affecting everyone and everything around me.

Sorry for the long post, I guess I am wondering if this is something others experience? What worked for you? Was it the transplant medications? I just feel really stuck, scared and exhausted.

Thank you for any help or insights.

Did dialysis for 3 years, wanted to stop. Extremely guilted and emotionally manipulated into continuing through mothers ugly crying at night begging me. Got a transplant - still feel shit, exercise, eat well, lots of medication changes to see if other stuff works.

People here might judge me for not wanting to continue dialysis, or call me weak, but I had had enough and was ready to go on hospice and palliative care, and after speaking to my nephrology tream, psychologist and social worker, they accepted what I had said.

I still don't want to do this, it's not mental, I just feel poorly all the time. I am grateful, but I also believe my deceased donor would give me permission to go if they experienced me for a moment.

But my family, I was emotionally manipulated into all if this, I was told withdrawing treatment was suicide, that I was being selfish, and my mom made me feel like her ugly crying at night begging me to continue dialysis and get a transplant (when the fat fuck couldn't lose a single pound of fat to lose weight to be eligible to give a kidney), was all my fault.

I was guilted into these cruel, experimental treatments for others. This entire ordeal has felt like necromancy, black magic, as if I get extra life but am making a deal with the devil, where I get more life and the expense of feeling poorly all the time.

Therapy doesn't help, because the problem is, I dont want to do this. It's my body, my choice, and it was VIOLATED. The most sacred boundary was VIOLATED, my decision to choose.

I am a hostage to my parents. I was born into this world without permission, and now I'm not allowed to stop these treatments without their position. What does that teach me?

That this body is not mine. It's theirs. I want back control, but the only way and desire I have is to speak to the transplant team, talk about stopping meds in a controlled manner and getting palliative and hospice care involved. That's my dream, instead I'm being suffocated by these cunt selfish parents who gave birth to me for their own emotional satisfaction, and hold me hostage just, if not more, selfishly.

Does anyone else feel this way? Am I alone?

I am stuck, I am totally and utterly stuck.

I’m allowed 1000 ml a day ☹️☹️ have any tips on staying hydrated ?

Hi,
I know this isn’t a big-time serious health complication, but…

Has anyone had frozen shoulders post transplant? My surgery was 16 hours & I bled extensively & was in ICU for a couple of weeks.

My shoulders haven’t felt normal since (transplant was 8 months ago). My shoulders are now getting more sore & stiff. My reading suggests frozen shoulders are the problem but I will, of course, ask my surgeons in my next checkup.

Thanks!

currently in the hospital after blood work yesterday. Amylase and lipase levels super high. Waiting on doctor but looks like I will be here a few days and steroid. I got a dual kidney and pancreas, kidneys seems to be doing ok though. Anyone who has experience please share.

I went to a track and field training session yesterday and got leg cramps in the early morning hours. This happens often with any kind of physical exercise. I drank some more water and took a paracetamol.

My GFR after the transplant has been hovering around 22-25 and it's been really hard to get back to shape, and as I was an avid runner, it's been frustrating. I thought joining a para sport group could help with goal setting. Let's see!

Anyone with low GFR facing similar issues?

I’m about three years Post Kidney Transplant. Overall doing well. I get my labs drawn about every three months now.

I take Envarsus XR in the morning. This is just the once a day version of tacrolimus.

Even though I take the medicine at the same time in the morning and get my labs done around the same time, my levels still seem to be unstable. Does anyone else have this issue this far out? I wonder if it’s something I’m eating.

Didn’t think we’d be here… but we are. I couldn’t find any other posts about AL Amyloidosis Heart transplants.

Male, 41, very healthy… diagnosed with heart failure Aug 2025

Did all the things, meds, appointments, diets. Couldn’t figure it out what it was from.

Didn’t get better.

February 2026 his HF was so bad after a right heart cath (PROBNP 28K) we were care flighted to Utah.

Was diagnosed with AL Amyloidosis with cardiac involvement. Did chemo and newly approved immunotherapy (Teclistamab) was has had a complete response REMISSION!!

We hope his heart would regain some function. V tach over and over, care flighted again. Got a pacemaker placed.

Came for routine follow up in Utah and was told we can’t leave without a new heart. They were actually surprised he’s been walking around and functioning (albeit not very well) and that his arms were warm with how little his heart was pumping.

He meets the criteria and is now listed as Status II.

Now we wait… there have already been offers but haven’t been the right size yet.

I’ll be the first AL Amy post and can do follow up for others that might go through it later. Wish us luck!

I had a kidney transplant in February of 2023. I only carried the Part A coverage as I opted out of B. Therefore, part A was supposed to expire as of 2/1/26. I am trying to access some of my employers insurance benefits and some are not allowed because Medicare Part A is still listed as primary and active. This was my second transplant, and after my first one the coverages dropped off automatically.

Has anyone had this issue? How did you solve it and did it take very long to get accomplished? I am planning to call the social security administration as the first step since it appears to be not possible to adjust from the Medicare website.

My dad age 55 cirrhosis and HCC we are looking for transplant evaluation and if everything is ok we will go for transplant. I am in dilemma which hospital to choose Dr Rela hospital chennai or ILBS Delhi.
whats the cost ?
Which is better ?
Will Dr Rela hospital be too costly ?
Is ILBS Delhi good ?
Reply if anyone can help me with queries!!

Today I was granted the contact information for my sons generous bone marrow donor, unrelated. Is it normal to be this emotional?

I’m 20 mo post op live donor (my daughter)liver recipient. I’m 75 yrs old & am doing well. I’m active, walking 2 mi daily. I take 0.5 mg of tacrolimus 2xs daily & 0.5 mg everolimus 2x daily. My question is: has anyone experienced an internal buzzing sensation? About six or seven months ago I started having what I referred to as an internal buzzing sensation. It usually would start around my knees and travel upwards to about my armpits. Then it would kind of settle into one area or everywhere between my knee and armpits. It has gotten worse over the last couple months. It’s not painful, but it has increased in intensity. My lab work all seems to come back normal, my tacrolimus and everolimus levels are attached. My dr is totally unfamiliar with anti rejection meds causing this but I have read much different information. Any help is greatly appreciated. I may have my daughter re post this if there isn’t much engagement because I have no idea what I’m doing.

And still waiting (34f), anyone else have a lot of calls as well? They seemed to all come on pretty fast but there’s been quite a lull now in between. Still trying to stay positive even though the fatigue and depression is getting to me. Apparently I am very small framed so a lot of donor livers are too large. I have AIH and PSC crossover as well, bile ducts are an issue. I am not by any means trying to sound ungrateful at all, just feeling my feels extra hard lately.

20 years heart transplant. Got labs done 2 months ago and the tacro level was 4.9 which is just below the 5.0 healthy range. Got labs done 2 days ago and it went down further to 3.7. They raised my amount by .5 and want me to get it checked in 1 week.

I haven't had any rejection in about 19 years. A little worried the inevitable is starting.

27-08-2025 had my second liver transplant (first was 21-03-2025). Happy to survived the first year, and lots more to come!

Gotta be at Hospital ER at 6am,
What all can I expect?
I’ve been on PD dialysis a year and a half and honestly I just started thinking a few months ago…”this isn’t bad, this could be better”
It’s just that, I’ve gotten used to this routine and I’m still able to do so much..nervous about losing what immune system I do have, and being sick and everything else that comes with it
What can I expect?
I’ve also heard stories of people living for decades and only taking 1 or 2 pills and have been fine

So many emotions