I don’t want to do this again :(

I really don't know how to digest this or how to plan my life ahead of now. I wondered if anyone here has similar experiences or advice?

I am really sick and my specialists strongly suspect I'll be hospitalised indefinitely. Because of NHS' strained resources and my unfortunate genes, a suitable donor will be like gold dust.

What do you do when you have so many dependents (pets), or just things that need taking care of? Bills, a home. I know transplant life is unpredictable but I feel like I'm giving up so much and slipping away from everything that matters.

If I really have to give everything up that I worked so hard for, do I just admit defeat at this point and decide dying at home is preferable? I am so defeated.

Looking for Liver Transplant Center Recommendations in Wisconsin/Illinois – MELD 31
Hi everyone,
I’m reaching out here hoping to get some advice and guidance for my father. We live in Wisconsin and are urgently trying to find a liver transplant center willing to evaluate him.
He was recently evaluated by UW Health but was ultimately declined due to concerns about his history of alcoholism and depression. He has now been sober for over six months, but we were told that his suicide attempt four years ago was one of the biggest factors in their decision.
Since then, we’ve been trying to find another transplant center as quickly as possible. Our insurance covers several hospitals within a reasonable distance, including St. Luke’s, Northwestern, University of Chicago, Loyola, and Rush.
Unfortunately, the evaluation process at UW took over a week, and we’re now facing an increasingly urgent situation. His MELD score is currently 31, and we know that time is critical.
Has anyone here had experience with these transplant centers, particularly in cases involving a history of alcohol use disorder or mental health challenges? We’d really appreciate hearing about your experiences, recommendations on which centers to contact first, or any advice on how to get him evaluated as quickly as possible.
We’re willing to do everything we can to find a team that will give him a chance.
Thank you so much for taking the time to read this. Any help or guidance would mean a lot to our family.

I am 3 days away from my first year liverversary 🙏🏼 but I had my year one followup with my Hepatologist this past week…virtually. I am extremely blessed to have had my sibling be my living donor and we are both well with no complications. Neither of us had scans and we were both surprised because we just assumed docs would want to see how the livers have regenerated but apparently unless you are having issues it’s not needed? Just curious if anyone else had imaging post one year. Also the biggest issue I have is from the tac. Constant neuropathy…freezing cold toes/fingers mixed with feeling on fire. The gradual lowering of tac hasn’t helped at all. I am currently on 2g/2g morning and night and 500mg cellcept am and pm. My Hep keeps pushing gabapentin but I decline because I don’t want another drug. After my next labs (by the end of the year) she may lower by 1 pill a day. I have come to terms with I am always going to have this and it’s fine but just curious for those longer out if you had similar experiences. I did ask about switching to envarsus but she said most insurance companies do not cover and didn’t really want me to pursue. Finally my scar bothers me occasionally but wondering if I should be massaging it? It just feels tight at times (and my bra unfortunately irritates it). Anyway thanks for taking the time to read and share any thoughts!! These are all minor inconveniences I know but this community makes me feel less alone! 💕

Having abdominal issues and a constant diarheaa is a known thing post transplant, even after changing the cellcept it weirdly stays for longer and barely any days u feel okay.

Editing for context: i am on myfortic not cellcept for more than a year but like for past few months its just a very recurring thing for me, like every other day there is some form of abdominal issue, you take some antibiotic and its fine and then back, no cmv no bk

Is this like a universal experience for all?

Just wanted to share a photo of me straight after my transplant in ICU (first photo) and the second photo is the next day. I also went for a walk the second day in ICU.

I'm forever thankful to my donor.

I'm doing extremely well now! (a year later). There is hope!

Long post, TLDR at the bottom!

My mom went into rapid liver failure with a cause we still don’t know. It came on out of nowhere and was so abrupt it shook us to our core. She went in thinking she had COVID and was admitted to the ICU right away. She was placed at the top of the transplant list and received her transplant on June 2nd, 2023.

I believe she needs to talk to someone about the trauma from all of this. It seems like she has some form of medical PTSD (if that’s a thing), and she avoids hospitals at all costs. The problem is that she waits until the last minute, or until one of us forces her, which means she’s already pretty sick by the time she goes and ends up staying longer. Then she gets upset because “every time I go to the hospital I end up staying here for a long time.” It’s a self-fulfilling cycle. If she went at the first sign of symptoms, I think it would be more like a 1 to 2 day stay.

Yesterday she finally went in after days of complaining about abdominal pain, dark urine, and pale stools. My dad had to force her to go once she hit a 102F fever.

I moved about 8 hours away for school in 2024, so I can’t be there in person as much as my brother and dad. They’ve been trying to help her see this pattern, but she isn’t listening. I’d like to talk to her after she’s discharged, but I’m struggling with how to approach it. I’d also love for her to try counseling or therapy to help her process and make peace with what happened in 2023.

Has anyone been through something similar, either as a patient or a family member? How did you get through to your person, or what helped you? Thank you all in advance!

TLDR: My mom had sudden liver failure in 2023 and got a transplant. She’s now so afraid of hospitals that she waits until she’s very sick to go, which leads to longer stays and makes her even more afraid. How do I talk to her about this, and how can I encourage her to get counseling?

Anyone 1 year out still experiencing shortness of breath, tight chest and upper back despite all testing being normal and being healthy and active?

Likely still aways off for most, let alone us, but developments in this field could hopefully extend all our lives!

Has anyone undergone these test please guide me.

Hey guys. My father in law is on the wait list for a double lung transplant. My husband is worried about what it takes to be his support person and I wanted to get a better idea of what it entails.
The internet says that it’s round the clock care for many months afterwards, but other places say that it’s not as intense.
What kinds of things do the support people need to do for someone with this kind of procedure? Would he need help going to the bathroom/bathing himself? Would he need meals made for himself and help feeding himself?
Any advice would be helpful and any little thing that maybe one wouldn’t think of but you found helpful either as someone who got the procedure or was the person helping someone you love? Thank you so much!

I tested positive for CMV & was put on Valcyte 450 twice a day. Recently at my last lab draw, my blood counts all dropped. I did a little research & saw that this medication can cause my blood counts to drop. Anyone else have this problem? & why would my team let me take this knowing my counts are dropping😭😭😭😭

I'm looking for a bit of insight, advice, or just general thoughts.

I spent the last three months qualifying to be a non-directed donor. I passed medical and psych examination but was finally told yesterday that when my case was presented, the transplant team judged me unfit for donation because my "routine might be disrupted."

I tried to get some sort of clearer explanation but all I was given is that I seem like a person of routines and the team thinks my daily routines might be disrupted and somehow this makes me unfit. The only other shred of explanation given to me is that if my routines are disrupted, because working out is one of my coping mechanisms, I wouldn't cope well.

I still want to donate to someone in need. Can anyone offer insight? Make sense of this because I certainly can't. Should I continue trying through a different hospital? Why would a healthy coping skill like exercising disqualify me?

Omg it has kicked me on my ass. It started Tuesday and I had a bad fever last night. Luckily it broke but I felt sooo bad. I called my team and they said if Tylenol didn’t control it to go to the ER which I’m just freaked out about spending 5 hours in the ER with super sick people. Unfortunately I live in a different state then where I got transplanted. I was hoping to be able to make it through the night and if I still felt bad I would contact my local neph but I feel better today. Anyone else have any stories of what they do when they’re sick? I’ve lost 5 lbs and barely been eating.

Hello everyone. I’d like to hear from those who are immunocompromised—especially transplant recipients—about how you have been dealing with health crises or flare-ups.

I can't get scripts. I have run out of multiple medications even though I have given the team plenty of time to do them. I can't get in to see my GP for 6 weeks so he can do the respiratory team's job for them, and they don't accept phone script requests. Medicare urgent care clinics don't deal with this stuff. I can't get surgery in time anymore. I wait so long for other appointments that I become very ill by the time I see them. I've had to quit uni due to the poor care for preventable illnesses (none of this had to happen). My veins have bad stenosis due to repeated PICCs for preventable infections they've left to fester, so now I'm left to suffer even more. After 12 years, I'm tired of fighting for my care. I can't f*%king get anything yet I'm looked down upon like I am scum of the earth who doesn't look after my transplant!!!!

Oh, and we still have a Creon shortage so happy 💩💩💩💩

Please, scream into the void for me today. Place your caps lock screams below 👇 👇 👇 👇

Today's the day. Three years. Not even sure what to feel anymore. I'll say it's been a rough and wild three years and I can't even begin to describe exactly what's going through my head - still awaiting a post-3 year checkup on the heart, so I can't say much about my health.

It still feels surreal, and the guilt is still there. On top of that, tomorrow marks three years without my great grandpa. He died the day after the transplant. October hurts for me, it's a month filled with death and medical trauma and it sucks. At least I can still enjoy Halloween, lol.

Don't get me wrong, I'm happy, and so far life's gone okay. But it's not easy sitting and reflecting on the things that were, and the things what could (or should) have been. I don't think a letter will ever come. I don't know how long this ticker will keep me going. All I ask for is prayer. God bless y'all.

So my family member is really sick, young he’s 36 but he is an alcoholic, bad on him of course but he had a relapse and his liver stopped working. He’s slowly declining because the hospital wont do a liver transplant even with multiple donors and pretty much they’re waiting for him to die, this is in California, is there a social program or any options you know of?

Hello everyone!

A little over a year ago, I underwent a kidney transplant, and I would like to learn more about the available options for treating hair loss and androgenetic alopecia following such a procedure.

I am curious to know if anyone has used any of the currently available treatments after their transplant:

- Finasteride

- Dutasteride

- Topical or oral minoxidil

- Oral minoxidil

- PRP therapy

- Scalp mesotherapy

I would greatly appreciate any personal experiences or advice you might have. Thank you very much in advance!

I was on dialysis for a decade and finally got my transplant almost 4 months ago and I have some questions about tacrolimus.

I have figured out a lot on my own, I just have two major questions.

im obviously having a lot of side effects from it, but the two I can find a solution to are the acne and the sweating.

has anyone found something that works for the sweating and acne?

Figured this could go here too. Advice appreciated.

My partner had his second liver transplant 3 weeks ago, and his recovery hasn’t been going well. The new liver isn’t functioning well and the doctors want to do a liver biopsy later this week to determine if the liver cells have irreversible damage or if it’s still stunned from surgery. A third liver transplant was mentioned as a possibility if the biopsy shows permanent damage.
I feel numb and don’t know how to maintain hope in this situation. It feels like he has had every possible complication with his surgery. We knew it was risky but we were very hopeful it would give him a fresh start.
How do I balance staying grounded in medical facts with believing he can survive this?

What stands out is that the US federal government seems to be focused on the wrong problem. There are plenty of organs being recovered, but their acceptance and use by transplant programs is the big issue.