r/transplant

I ask because I like to know in advance if it ever becomes a need.

I understand that I would qualify for disability if I end up needing a transplant. Would it benefit me financially to remain unmarried and not have property in my name - in terms of getting any financial assistance?

Has anyone discussed doing an ayahuasca after a transplant? I see some potential conflicts between tacrolimus and ayahuaska alkaloids with CYP3A4 enzymes, and I will definitely discuss this with my team, but I’m curious if anyone already had those discussions?

Hello everyone,

I am 37F and my mother is in end stage liver failure due to poly substance abuse. She was abusive and neglectful to me during my childhood to a criminal degree. I’ve done years of therapy, am diagnosed with PTSD and OCD; I take meds for this, I don’t drink but I do use cannabis. I have 5 other siblings (she treated them better than she did me and this is acknowledged in our family) but I’m the only one that is single without children.

My question is: would anyone recommend that I donate my liver to my mother, given my specific situation? I’m pretty sure the resentment would eat me alive. Maybe I just need support for backing out of this.

Thanks y’all

I’m a female and I’m noticing a lot more hair fall after transplant. I’m about 4 1/2 month out from a kidney transplant so I’m not sure if it’s the trauma from the transplant and it will stop or the meds. I’m on 2mg of tacro and 1000mg of mycophenolate and 10mg of pred for immunosupression. I have a lot of hair so I haven’t noticed it much in my hair except I have more baby hairs in the front so maybe they are falling out and then growing again?? It’s kind of stressing me out because every shower it’s a huge handful and before I usually only had a few hairs and every few days I have to clean up my floor because it’s covered and I never had that issue before.

Thanks!!!!

I don’t feel tired like a lot of posts say, I do walk a lot (it’s only day 4 since surgery), drink plenty of water, and take medicine (not the hard stuff cause I don’t want bowel issues). Mostly I’m walking and sitting reclined playing games. I’m 26 so that may have a lot to do with it but I wish I slept more. When I am sleepy, I am full blown exhausted but it only lasts a few hours then I’m awake again.

Now on a totally different topic, my recipient got discharged yesterday and is doing so well! My kidney (her kidney now) is enjoying its new home. Any help would be helpful. It being the 4th it’s hard to reach out to my care team about my sleep. Obviously if it was urgent I wouldn’t be looking to Reddit for answers before them.

What are some things that came in handy for you guys or things you wished you had. My dad just had kidney transplant surgery and I’d like to put together goodies for him!

My buddy got a double lung transplant 2 months ago today. He’s in his Early 60’s. He kept getting denied transplants at hospital but finally found one of the best hospitals in America and they accepted him after doing numerous tests. They also discovered he needed a double bypass also. They did both at the same time and the surgeon went well and for the first couple of days, things were looking great. After that it’s been non stop complications after complications after complications. 1 step forward 3 steps back. The main issue is constant fluid that keeps coming back and now his oxygen levels drops especially when doing physical therapy. He’s back up to 4 liters of oxygen. They’ve done biopsies of his lung, a vats procedure, pigtail to drain the fluid, and Adjusted his new medications for his lungs a couple times. I have complete faith in this hospital as I’m sure he’s not the first transplant with complications after complications. He’s in good faith, I’m in good faith, his wife is in good faith but I can tell she’s gets more stressed after each complication repeats.

So how was your experience with the transplant. I hope you all are doing well!

30 male, got a heart transplant at 14.

How do you guys deal with the fear of organ reject and possibly be the end soon? In around 2 and a half year, I went with only one plaque to multiples including one at 90%.

That was one year ago in June

Edit I got multiple stents with medication in it.

The exam that was done 3 months after the initial one sowed good results. I have one planned in October, 3 months from now.

But I just now realized and learned about CAV... So I am freaking out. I just bought a house with my girlfriend and planned to have a baby.

They never told me I had CAV but my blockages did appear fast. But I also broke my hip a few months before and had a lot of stress in the previous years....

Was diagnosed with kidney failure at a young age (20s-30s) but no one knew why. Ended up on dialysis and eventually got a kidney transplant when I turned 50. Turns out there’s a rare mutation that runs in our family, affects 1 in a million.

I’m an attorney and the meds are really messing with my sleep, my focus, my memory, etc. I used to be able to work 8-12 hours at times.

Now I’m lucky to get a few hours in a day. My brain fog is so bad and I’m tired all the time. Guess it’s just the price of being alive for which I am so so so grateful.

It’s just frustrating the impact it has on my memory and work. Anyone else dealing with this? Received my transplant in 2022.

I am currently at cedar Sinai in Los Angeles CA.

I had two family living donors for the first 8 months of evaluation. But they dropped off. One moved to Texas the other simply got busy with school and work.

I sacked up and sucked it up. It sucked but what can you do……

Anyways now I have 2 more donors. A family friend and a random stranger who found a flier I passed out to businesses and cafe’s. Cedars confirmed both in the system. Both are my blood type. Healthy. No medical issues. The Second Lady told me.

Anyways cedars is still ringing me through psych clearance. My psychiatrist wrote the clearance but cedars wants me in one medication for 3-6 months. And my psychiatrist wrote and I are still changing meds atm. My therapist wrote a clearance saying I was good; but cedars isn’t accepting it t one month. They also want 2-3 months in this.

I’ve already lost 2 donors due to time. Like everyone here I want off dialysis yesterday.

Should I try to switch to UCLA or John Hopkins? Or just tell my psych and therapist I’m good even if I would like to change my meds a bit more and sing that line till hopefully clearance?

I don’t know what to do here but I don’t want a repeat

Hi all. I've recently been considering trying for a lung transplant. I was evaluated about 5 years ago and was told I was still too healthy, but my pulmonologist thinks that I may qualify at this point. There is an age cutoff which I am approaching, but my pulmonologist says they might extend that.

My biggest concerns are, number one, it seems like a very heavy surgery with a very difficult recovery.

Number two, the medications for anti-rejection. My late husband had a kidney transplant and I'm pretty sure the drugs he had to take exasperated his existing mental health issues. My mental health is pretty good but that is still a concern.

Number three, the average life expectancy after a lung transplant is only 5 years. I assume if you survive the surgery you probably get more than that on average. I really want to outlive my little dog who is only 6 years old. I expect he could possibly live to be 20 years old so I need to live another 14 years at least!

Have any of you had a lung transplant and can you speak to these concerns?

Two part question, first it just occurred to me that I should wash my pill case every once in a while and wonder how often you all do.

Second does anybody have a preferred pill case?

hi. i had posted a couple of updates on my health in r/HypertrophicCM. its been a while since then and i had now just had a heart transplant. a lot has happened in 4 years; fainting spells, dizziness, lightheadness, etc. however, I am now in the recovery phase and was wondering what life would look like now. i am still so scared of everything but am so excited as well. I would appreciate some insight on this process!!

Hey there,

Apologies for the long post.

Just a little background... A good friend of mine (36M) unfortunately requires (required) a liver donor. Approximately 6 weeks ago I (38M) told him I would be willing to donate and started the process. I was a blood type match and began abstaining from alcohol cigarettes and THC. I wouldn't say I'm an alcoholic but I definitely would enjoy drinks with friends on the weekends. Also the occasional cigarette and THC edible. No prior health conditions.

I'm just about at the point where the donor team wants to bring me to the other side of the country to run all the deep tests now that it's been over a month since I've been abstaining. Specifically they said they would reach out on July 11th to see if I would like to proceed.

In really awesome and exciting news... My friend was just recently (2 days ago!!!) was able to successfully get a deceased donor transplanted and is currently undergoing recovery. (HUZZAH!) We are all super happy for him and keeping our fingers crossed that everything takes nicely. Apparently the surgeons are saying he's doing better than about 90% of their liver transplants... Not sure if they're saying that just to be optimistic but it sounds promising. :)

Here's my dilemma/concerns.

Myself my wife and our friend group are all folks who enjoy our libations together especially on holidays. This weekend for the 4th of July we were planning on doing an out of town visit to a city we've never been to where we will be going to my other good friends Aunt and Uncles cocktail lounge (tickets and hotels were booked way prior to me figuring out that my friend needed a liver transplant and I began my abstaining from aforementioned substance).

At the very least I would really like to have a sip or two of their cocktails to try out the place as I've never met them and never been to their place before.

I would love to try some of the cocktails at their fancy cocktail place... But I just have these thoughts...

-"What if my friend rejects his new liver? If I have a drink or two is this going to completely reset my "donor testing" clock?"

-At what point should I say, "I think it's unlikely he will still need mine"?

-Even if I did have a few drinks this weekend would he even be able to undergo a new surgery this soon after his last?

My wife is of the opinion that realistically having a drink or two over the course of 2 days isn't going to have any reasonable impact on my liver health... But I'm also thinking that this might risk me being disqualified from a donor perspective if the absolute worst case happens and he experiences acute rejection and I need to fly out quickly.

Any thoughts and expertise are appreciated on this.

I’m 20F on the transplant list with MELD score 10. I have enlarged spleen , portal hypertension, history of esophageal varices. I’ve been taking birth control Aurovela 1-20 tab . I’ve been on it since last October because before taking it my periods were really heavy and I bled everywhere. Since being on the birth control my periods are much lighter, shorter, but I’ve been getting 2 periods. My liver team recommends a IUD, because the birth control can cause a risk of blood clots which isn’t good when it comes time for transplant. I have a couple relatives that are very against IUD because it’s a foreign object inside my body. And that I can just stop the birth control when I get my call. But I don’t want to cause even more complications. I have no idea what to do. I’m nervous for the iud. But also don’t know what to do. Any advice is greatly appreciated. Also wanted to mention I suffer from migraines.

Heading to Cedars Hospital tonight. I am officially on the transplant list and they want to admit me because of fluid issues. They want to put me on dialysis until the liver becomes available. My Meld is 39 and I have B positive blood type so they say that I will get priority for a liver. I just have to wait in the hospital but it's happening. It's all good news and I'm so happy. I ask for your prayers and any information that you can share. I would appreciate. Thank you.

Hi Reddit, I’m 31 years old(F) and have been living with a heart transplant for the past 16 years (transplanted at age 15 in 2010). I feel SO lucky to be alive and I am eternally grateful for the second chance I was given at life and for my donor! At the same time I’ve been living with this debilitating fear of dying, just the simple act of having to take the rejection medication every day for the rest of my life and being confronted with my mortality on a daily basis can be a lot sometimes. If I ever accidentally miss my medication I feel this overwhelming dread that I am killing myself and am disrespecting my life and my donor’s as well. I’m also incredibly hyper aware of my body to the point of having panic attacks if I feel any sort of weird twinge in my arms, chest, shoulders or back. I immediately spiral into thinking my heart is failing even when I logically know it’s not. I’ve been in therapy for most of my adult life; doing EMDR, and learning how to manage the anxiety on my own, as well as been on SSRIs to help curb the anxiety and depression I’ve faced from the cptsd of my medical experiences. ( I also had rabdomyosarcoma at age 2.5 and relapsed at 4 again resulting in a full hysterectomy as well as radiation therapy and “Vincristine” chemo therapy) so I’ve grown up in and out of the hospital for my whole life. As I get older I feel that fear of dying weighing down on me more and more but I’m still so young and I want to be free from the dread. I read a few articles about how psilocybin is used for treatment of terminal cancer patients who are facing a lot of fear about the end of life and that it really puts them at ease. I am desperately seeking some sort of relief but am too scared at what might happen to my heart if I took psilocybin on my own, so I would never want to do this without a medical professional to guide me through it, but I live in Florida where it’s not available as mental health treatment (only ketamine treatment is available and I feel weary of that) and doctors are not open to speaking about it with me so I was hoping I could find some advice or resources here on Reddit from a cardiologist who is open to this treatment! I would be soooo gracious for any and all thoughts on this topic! Thanks Reddit ❤️

Not looking for clinic talk, just curious how people actually made the call on timing. Did you wait for stabilization, a certain age, a certain graft count being "worth it," or did you just wake up one day and book it?