IamA Two Time Liver Tranplantee who is celebrating their 5th Liverversary and who met my donor. AMA!

Did a part of you ever consider to let your body do its thing and just accept that your liver is failing and you won’t be around as long as everyone else?

I have the same conditions as you, psc, uc with added autoimmune hepatitis and autoimmune thrombocytopenia in the mix. My lfts are always high but my liver is holding out, despite having cirrhosis. I’ve not told anyone but I’ve decided that when the time comes that my liver fails or I get cancer I’m just going to let it slide and not fight it. I find it a far more peaceful way to live life. I can do everything I want now, knowing I’ll never have to worry about the future.

EDIT: Fun fact - below in this comment chain there is an anti-vaccine bot using rather antagonising language. Have a look at its comment history. I’ve never discovered a disguised bot in the wild before but it’s initially surprisingly convincing. Until you start feeding it nonsense.

I definitely did. The first one I was only seven, the real effects of literally waiting for someone to die so I could live wasn't really in my mind. But as I got older I realized that not only am I waiting for someone to die, but I'm also taking a second organ for myself when many don't even get one. I talked about it a lot with my mother and the doctors and they made a point to say that they don't really just pick livers to give to people willy-nilly, they strive to find a liver that matches your body type and shape and you only have less than 24 hours before an organ is damaged when out of a body. If there isn't anyone near to get that organ, it will go to waste. When they told me that I had a possible match, I was one of 3 people waiting at the top of the list at that hospital and they chose me because the liver matched my blood type, size and shape, when it didn't in the next two biggest cities, Philadelphia and Washington D.C. (where the liver originated).

I still struggle with the fact that I am alive because two people died and the doctors were very clear with my mother and I that I had about a 50% chance of survival during the procedure and the head of the department came out 4 hours in to say that I was not doing well on the table. It's crazy to think how many times I should have died, but haven't. Realistically, I should have died about 5 times before the second transplant, I was septic 4 times and the catalyst to me spending 8 months in Pittsburgh waiting for the transplant was I woke up covered in blood due to internal bleeding. How I didn't die during those sepsis episodes, or how I managed to not bleed out (while I was asleep mind you), I don't know.

I hope you talk to someone about your feelings, it helps to have a soundboard on these types of rather complex issues. Feel free to PM me, if you'd like.

I should have said, when I say I don't tell anyone, I mean more medical professionals. My parents and friends know and understand my views. I'm incredibly positive and happy. I attribute my attitude to the view I take on my illness. I think without it i'd feel so limited in what I can do and at that point i'd just be trying to live as long as possible for no good reason. It's cool to see someone else who has this condition though! I'm not a big fan of messaging but if you want to skype to share experiences of this disease im totally down!

Ah, I see. You have to be careful when talking about depression with a surgeon when waiting for a transplant as depression is one of the major things they screen for. I talked to one of the four surgeons about it and he said it was common for recipients to feel helplessness when waiting for a transplant. I agree that living just to live without any kind of quality of life is not something I want. I have very clear criteria in my will on what is to happen should I become comatose or generally vegetative.

I'm hard of hearing, so Skype doesn't really work well for me, but if you're comfortable, shoot me a PM anytime!

Another PSC/UC’er with multiple other issues checking in....I am at a point where I don’t care anymore. Our health care system sucks, always a new health issue and generally the more I try to be a fighter the more blows I seem to take. Thought of a liver transplant just seems a waste given my issues in general.

EDIT: Gold?! Wow, I'll always remember they day I got cheese on my Original Chicken Sandwich Burger King meal.

I feel you. It's slowly (very, very slowly) getting better. I just changed insurances twice in 4 months because the first one I changed dropped the hospital system with my most important docs and it has been hell. My mother has me doing everything and I completely understand why she would be yelling and crying on the phone when I was younger, talking to insurance people and even some doctors office is infuriating. Just do what you're supposed to do and communicate!

I really hope anyone having doubts about having a transplant that they need talks to a psychologist. It really helps! Anyone feeling the same way, PM me at the least. There are a lot of support communities online as well.

My husband had a liver transplant 6 months ago due to AIH/PSC. He still struggles day to day. We are lucky enough to live in the UK so the NHS pays for everything and we don't need to argue with insurers! Before transplant he found it difficult with the whole someone has to die so he can live thing. It seemed such a morbid concept. His transplant team have advised him to send a letter (through them) to the donors family a year after transplant. But what do you say to people who have saved your life? Thank you seems so inadequate. I wanted to ask you about the weeks after your transplants please. Hubby had a horrible time which they said was "ICU psychosis" He was paranoid, thinking people wanted to hurt him and he became aggressive with staff, which is so unlike him. When we got him home we thought it would be ok but he was obssessive with germs, wouldn't go near our dog or cat, poured soap all over the kitchen and would only eat things he classed as 'safe'. He kept looking out if the windows for anything that could be a threat. It took about 4 or 5 weeks for him to start being himself again, slowly. Did you encounter anything like this?

I'm sorry you and your husband had to go through that, I hope you're doing well now! Thankfully I didn't go through that. I will say that I did have a very small piece of what your husband had when, in the middle of the night the IV in my neck somehow burst and I was so hopped up on drugs that I nearly choked the nurse that was trying to numb and stitch me back up. But it was only that one incident.

My friend is currently recovering from a heart and liver transplant. I asked him how he copes with the fact that someone must die for him to live. He personally is religious and finds peace with that, but I don't know how I could cope, as I am not. I think what you are doing for others (sharing your story, being available to chat, etc) is immensely important. I hope you can help others find peace with their transplants and hope in a new life after. All my best to you, OP!

As a registered organ donor, this is the last thing I would want anyone to think about when it comes to receiving my organs. Eventually, I'm going to die. Hopefully I'm "gonna die an old...old lady warm in her bed, not here, not this night. " (Thank you Jack, I'll never let go.) But the fact remains, I could die tomorrow in a freak accident. I would be missed by my extended family and friends, but I really think it would only devastate my immediate family: three people (and a cat if he understood what was happening). I would like to imagine that maybe that death could also make a equally positive change in three or four other people's lives if they got my heart, lungs, kidneys, and liver.

​

Basically, the death is going to happen if it happens. Assuming no one is coming after me with a gun for organ donation. It can be a meaningless tragedy to everyone it effects or it can have just a little bit more meaning. So as far as I'm concerned: by the time you would be taking the organs, please enjoy! I want you happy, not thinking about me dying. I have a family to do that for me, you on the other hand get to live and that bring some good to the world that would otherwise be missing. If we're in the same area and want to give flowers to my family once, that would be cool, but that's more than enough. It would be nice for them to remember that although my death was tragic, some part of me still did a little bit of good and that it brought life to someone else.

Very well said, I have a very similar hope should the same happen to me. For me, it was more about thinking that I TOOK something from others that were in my position, as in I thought that I didn't deserve a second or third chance to live when many don't.

Of course, I still feel immense guilt that the first transplant didn't take, I think about daily TBH. I would honestly be ashamed to meet the family of my first donor, I would feel like I betrayed them and my first donor. I'd love to meet them, if they were interested, just to show them and tell them just how much their daughter's life, death, but ultimately her and her family's selflessness in choosing to be an organ donor meant to me. I wouldn't be able to express it well, how could you, but I'd hope it would bring some kind of closure for them.

I don’t quite understand the domino transplant. The girl with MSUD gets a healthy liver, and you get a screwed up liver? Is the idea that the MSUD liver is still better than the one you had at the time? Or does the MSUD liver heal once it’s in your body?

I understand the confusion, I really only know in layman's terms about this process. Essentially there's nothing wrong with the MSUD liver except that her genes don't code for the production of a specific protein. Since my genes do code for that protein, and since I had completed the majority of my cognitive development because I was 16 and MSUD is non-communicable, I received a healthy liver.

Since the liver codes/produces the most of that vital protein, a liver transplant, if done early during development, can increase cognitive development to normal or nearly-normal in an MSUD patient. So there is one person who dies and two who get a transplant, which is increasingly important since organs are in short supply.

Thanks for the explanation! At first I thought you were getting a crappy liver because you’d already had one, and they were letting the younger girl have the good one because she was cuter or something. :)

Oh no, that would be HIGHLY illegal. This was honestly the best situation that could have ever happened. Her liver was the right size and shape and in very good condition and the liver was only out of her body for ~20 minutes before I was wheeled into the OR.

liver was only out of her body for ~20 minutes before I was wheeled into the OR.

In the organ transplant community we call that a "Hot Swap" because the organ is often still warm. Also, thats not true and I have no idea what I'm talking about.

It's like Hot Potato, TBH

Hi fellow transplantee!

Feel free to join us at r/transplant if you aren't a member already. Lots of liver tx patients and everything else.

I'm also a liver recipient, got sick at 16, listed at 17 and transplanted at 19. I had a living donor, and my donor was my aunt. Transplanted September 30 2009, 14 hours on the table.

Did you gain/lose any allergies? I lost my cat allergy because my aunt isnt allergic. It was weird but awesome because now I have 3 kitties!

Thanks for the invite, just subbed! I hope you and your aunt are doing well!

Thank god I am not allergic to animals, I love them! I don't think I gained or lost any allergies. I'm allergic to cruciferous veggies, but haven't had them since that one time I accidentally ate brussel sprouts (when I was 8) and got a very bad case of hives, I actually have a scar from it!

I did gain more enjoyment/craving for pickles and milk though! Also, another odd thing, was that the referred pain I experience during a bad rejection episode changed each time. Pre-transplant it was my left calf, post first transplant it was my left shoulder and now it's back to my left calf. Maybe some pathway was switched? Thankfully, I've only had one fairly bad episode since post second liver transplant, so I am pretty much pain free!

Shoulder pain is common. Usually referred to the right shoulder for liver. I called it my stress shoulder because it would hurt when I was stressed or my liver was being extra crappy.

Now my left shoulder bugs me if I eat past satiety. My docs told me that in the organ rearranagment my stomach likely is close to a nerve that goes to my shoulder, so being full irritates the nerve and causes left shoulder pain. Gas can cause that too but ive found it's mainly if I eat till I'm 'full'. But I hate that feeling anyways so I can usually avoid.

I used to be fine with cruciferous vegetables (still didn't like them much) but now I get horrid gas cramps from onions. I've found that I crave onions all the time but I have to take some Beano before eating them or I'm in a world of pain that lasts like 3-4 hours and then I can't sleep.

The calf thing is weird, never heard of referred pain from that. Maybe a magnesium drop caused muscle cramps there?

That sucks, I love onions. At least you're able to cope with it (somewhat). Is it cooked or raw or both?

I'm not sure about the cause of the pain, the docs never really looked into it that much, it was hard enough to explain to some docs that my calf or shoulder pain was indicative of liver rejection until I had enough incidences of asking for bloodwork (which showed elevated liver numbers) when I was in pain for them to get it.

That makes sense. Eventually we learn that something's up since we're told to hyper react to everything with our body. Only downside is then they get mad when we continue to hyper react and label us as hypochondriacs/drug seekers. They told us for years to come to the hospital for a fever, for anything really. Then years later get annoyed if we continue that. What the hell!?

Luckily I've never experienced rejection, aside from the original rejection immediately after transplant (big syringe of solumedrol cleared that up)

Glad to hear you're doing well! I agree, docs and nurses need to listen to their patients more, it's what separates great docs and nurses from bad ones! I can't tell you how many times I told a nurse that the veins in my hand roll and then they stick me and guess what?? They miss, because they roll. Now you wasted both our times and you look like a fool especially when I have huge veins everywhere.

You're lucky. All my veins are shot. They usually have to bring in a phleb to get an IV if I need one. I had a nurse miss 4 times in one night. She was such a bitch too.

Thankfully my mom's side has big veins that I inherited. Thankfully I have a port now. I get a monthly IVIG infusion and get my blood drawn through the port, so I haven't been stuck in a while.

My wife is coming up on her 32nd anniversary of her second liver transplant! Great to see all of you doing well. And, you have a long life ahead of you!

Fantastic! Give her a hug for me! Let's hope there are many happy, healthy years ahead for all of us!

First off, your story and resilience is wonderful, I’m so happy everything is going well for you!

I’m a pediatric ICU nurse, my question for you is, what could the nurses have done for you or your family to make your stay better? What did the nurses that you liked do? And the ones you didn’t care for so much, what did they do?

Thanks a bunch and again, congratulations!

Thanks for all you do for kids! Y'all are troopers and really make those tough times better! For real, nurses, especially ICU nurses, are super heroes in my book. Pittsburgh was an amazing hospital with some of the best nurses (ICU and general), so I really didn't have many problems. I had one nurse that wasn't really attentive, so I guess just being present to hear and act on questions/general requests is the best. I was comforted when someone (nurse or doc) took the time to talk to me about why I might be feeling some way and help me get past it instead of just like, "Oh ok, that sucks bro".

What's the life expectancy of a recipient of a liver?

I believe that, if you survive the first 6 months, the expectancy is 22 years. But that's an average, some people live on a pretty normal life but some die. Most of the people I knew that received transplants and passed died due to recurrence of their disease. I believe the first liver transplantee (which was in 1989) is still alive.

I'm 25 and just passed by 6 month Mark and I'm still scared to constantly something's gonna go wrong.

Hey man, congrats! I hope you're doing well! The first 6ish months are the worst, that's when most things go wrong, it's the "critical period". Since you passed it, the likelihood of something happening deceases a lot. Most of the people that I knew that passed has issues within the first six months, so if you're doing well during the hardest part, it's only going to get better!

Did you get a living donor? I didn't and the life expectancy is not as long

I did get a living donor and I know that makes a difference, but as I said, if you make it pas the first 6 months, chances are you're going to last a while, so long as you take care of yourself. Diet, exercise, taking your meds and reducing stress will make you feel better and live longer!

Amazing story, thanks for sharing! And all the best on your continued good health and journey in life.

According to the Mayo clinic, they do the Domino procedure for people "60 years old or older". Did they ever tell you why it was acceptable in someone your age? It seems like amyloidosis can occur in the recipient.

https://www.mayoclinic.org/departments-centers/liver-transplant/domino/gnc-20229028

Yes, you can do a domino for two diseases, one is with amyloidosis, UPMC has a process specific for pediatrics with MSUD, so recipients of an MSUD liver have essentially no chance of developing the disease or amyloidosis.

More info here: http://www.chp.edu/our-services/transplant/liver/metabolic-disease/patient-stories/laurence-reiff

How aggressive is your ulcerative colitis?

It's been under control for a long time, but I've recently had a fairly bad flare up, so I'm on Budesonide and higher Prednisone for a couple of weeks. At least I'm getting my room clean with all this energy from the prednisone!

Everyone bitches about Pred but honestly made me feel like a million bucks. Didn’t have withdrawal issues either. Guess I’m just lucky? 💁🏼‍♂️

I've been on it so long that I really only just get a but more energy and hungry. My mother on the other hand is very sensitive to it and feels like crap whenever she's on it, as do many others. I mainly hate it since I have cataracts and short stature due to being on it for 19 years continuously. Glad some people can handle it though, you're definitely lucky!

First of all, I hope you will feel better after all! Are you an optimistic person?

Thank you, I appreciate it! I'd say I am fairly optimistic, in the end, most of the things we worry about don't matter in the long run, so I try not to stress out or dwell on the small stuff.

Why did the MSUD patient need a new liver, but that liver worked for you?

Because my body codes for the protein hers doesn't, so even though the liver might not make it, I won't get the disease and the rest of my body makes the protein fine. The liver makes the most of this protein of any organ, about 20%, so it won't cure the disease for her, but it will giver her at least some of it.

That's fascinating, livers really are cool!

A friend of mine is a double heart transplant patient. He got his first transplant at age eight, and the heart began having trouble around age 30- low level rejection basically makes hearts age faster. He began having heart failure at 38, and eventually had a second transplant, he's doing amazingly well overall.

Livers really are fascinating, the largest internal organ and the only one that can regenerate! It does a lot more than people really know about!

I'm glad to hear your friend is doing well! It's really amazing to think we can take a piece of someone else and transplant it into another person, especially more than once! Give your friend a hug for me!

My older brother has (had) the exact same 2 diseases! He was kept on steroids and multiple medications until he was in his twenties, he got put on the transplant list (uk) but the quickest way was a live donor! So (after a crazy amount of deliberation and tests on family members) my sister ended up giving 60% of her liver. Unfortunately he never fully got better from that and he ended up back in intensive care as his body had destroyed like 80% of it in a couple of months! He ended up having an emergency transplant from a deceased donor that worked. The recovery was slow but he’s healthy as he can be now, a couple of years on :) sorry for the long comment, but I thought you were him when I first started reading and it brought it all back! My question is, how has it effected you being on immunosuppression? Like when you eat places, or even go to your friends house for tea? People don’t realise that you have to be super careful, like a pregnant woman, basically for the rest of your life afterwards.

I'm happy to hear your brother is doing well! My mom, dad and sister couldn't donate due to not being matched, but they all got tested.

Immunosuppression is thankfully balanced pretty well so I can do pretty much everything but I still have to be alert when I'm around coughing/sick looking people, so I'm always on alert and always have a mask with me and obsessively purell/wash my hands. When I was in 6th grade, I went for the first 9 weeks but never made it an entire week due to either being sick or at a docs, so I had to transfer to online school, it was really bad from age 12 - 17, but slowly got better to where I am today.

You listen to Migos?

A bit, I'm more of a Denzel Curry guy myself. Why?

Have you looked in to Colorado State University in Fort Collins, CO?

http://graduateschool.colostate.edu/Programs/horticulture-landscape-architecture/hort-ms/

They’re an awesome school with great agriculture programs.

Best of luck in all you do!

Thank you, I appreciate it! And Yes, I have! I made a list of programs/research I'm interested in and Dr. Joshua Craver at CSU is on the list!

I’m a Gator with an Ag Engineering degree. We have a great program!

I'm going to speak with Dr. Kiker (the grad counselor for ABE who taught a Hydrology course I took and somehow aced last semester) about the Ag & Bio Engineering program later this semester!

What do you reckon TV gets right but really wrong about organ transplants?

A lot of people tend to think that a transplant fixes everything. It might cure a disease, but you trade one set of problems for another. That's not to say that a transplant will mean you have the same quality as life before, it's usually better, but that doesn't mead there is still a constant need to be alert about your body and healthy and attentive of medications.

So essentially, you’re alive! However now you have to endure this regime. I’ve read that the drugs about rejection are many, but getting better, and quality of life has improved dramatically. But still, you don’t walk away at the end of the episode. That’s when the hard work starts. If only we could all be The Fonz.

Absolutely! I'm certainly not complaining, but your problems don't magically go away after a transplant, you just get new ones.

Were you nervous meeting your donor? I’ve always thought about, yeah thanks but I really don’t like you or your politics. But thanks for your organ. Do you feel obliged? What a strange world.

No, she was a little girl, half my age. I felt nothing but joy when meeting her and her mother. They were both so nice. My mom actually told me today that when she was waiting for 13 hours on my transplant, she was in the waiting room and people would come in and talk about their kid's problems to her, relatively minor compared to a transplant (apparently on mom talked about her sons balls for like 30 minutes, LMAO). Then my mother was on the phone with her friend trying to keep it together and my donor's mother heard he my mom say transplant and they got a few sentences figured out (due to the language barrier) and figured out that I was getting her daughter's liver. Vert surreal.

I would however be nervous in meeting my first donor's parents. She was a 19 year old who had died from a drunk driver hitting her and the fact that I'd have to them that their daughter's liver didn't last very long would make me...I guess ashamed, like I let her and her parents down and that I wasted that chance, even though I know it wasn't my fault, I still feel very guilty.

Thanks for your story. So you saw the little girl who was your donor? I’m sorry but I don’t quite understand. In regards to your first donor, I’m sure there were many other people who benefited besides yourself. I’m a big believer in organ donation so please understand my curiosity.

Yep! I saw her 4 times. We were on the same hospital floor (transplants) and only 5 rooms from each other. She was released about 4 days earlier than me, but it was also her first transplant, so that's understandable.

Thank you, I appreciate it! I hope that, despite the family's immense loss, they take at least some semblance of peace knowing that, while their daughter's death was nothing short of a tragedy and should never have happened, it did enable many lives to be saved. I'm an organ donor as well, so should I die you and beautiful, I hope I can serve others the way I've been served, it would be an honor.

What’s your alcoholic beverage of choice?

Just kidding.

Man, you’re tough to have gone through that many transplants.

I appreciate the kind words! Docs say I can't have alcohol or tattoos, so I can't say. I'll just be the guy who takes pics of my my drunk friends and make sure they don't kill themselves or others with driving.

Are there any other restrictions? Also if so, which ones do you wish you could try?

I'm not gonna lie, I'd like to try some alcohol. But that'd be selfish and destructive, so I'll just have to take people's word that it's pretty good.

Other than alcohol, tattoos & grapefruit, the latter of which I was told interfere with anti-rejection medications.

Somewhat related question - What about cannabis? You can have a lot more fun with a lot less headaches (literally and figuratively) with pot. :) Just curious if it's also restricted.

I haven't tried or asked, but as long as it's not smoked, I'm pretty sure I can do it. Just gotta get to one to one the cooler states where it's legal, LOL.

Come to Canada where the pot is legal and the liver transplants are free :)

Legal pot and all the transplants I want? Count me in!

In all honesty, I'd love to move to Canada, I love the cold and it's a beautiful country.

Out of curiosity, why tattoos? I have some guesses but just wondering!

A lot of people wonder that when I tell them. It's a foreign object in your body that can cause the immune system to become more active, so liver rejection would most likely occur.

Thanks!! Does this also apply to piercings then? What about Tylenol/acetaminophen?

I don't have one, so I cant say but from what I've heard, no. I know several women who received transplants and have their ears pieced and it's fine. It's more of if it's embedded in your skin that problems arise.

For liver transplant recipients, NSAIDS are to be avoided if you can. I try to limit it to less than once a month, which has worked since I'm no longer in pain. The docs say Acetaminophen is better than Ibuprofen, but both are problematic.

Thanks for sharing your story!! My uncle (54yo) is currently waiting for a lung transplant. He's been on the list for about two years. The first week of December he was careflighted down to Stanford Medical to receive his transplant. As they were prepping him for surgery, they cancelled the operation because they couldn't use the organ.

The nurses seemed unphased, because transplant recipients have "dry runs" for their transplant? I know things happen, and I'm glad they're only using the right organ for transplant to ensure a successful surgery. I've been to a few of his appointments, but it still seemed bizarre that they were okay with it. I realize medicine is a different world to work in.

His listed primary caregiver is his partner's daughter. She didn't go get him after the canceled operation, but I did. He needed oxygen tanks and I ended up spending 12 hours driving to the hospital to get him, and then from the hospital to our hometown. While we were driving he asked if I would go with him next time he's called for the operation, and help him post-op. My brother and I have been taking my uncle to his monthly checkup appts at Stanford for the past several months.

It's now been about 2 months since the "dry run transplant" happened.. and I honestly thought he would find another donor sooner. And I fight with myself for having thoughts like this, because I realize the donor is a person also..a person with family and friends. My uncle has the best disposition in the world, he's so positive and grateful for being here another day. He is seeing counselors also. I'm struggling with the emotions though.

Having gone through the transplant process twice, how do you mentally prepare? Or I guess, how do you handle the waiting and the massive uncertainty? Do you have any suggestions on how I can be more considerate with my uncle while he goes through this?

My parents both live out-of-state, my uncle, brother, grandma and I live in the same state. The hospital is out of state, a 5 hour drive away, if there's no weather or traffic.

I appreciate your time, and your advice!

And congrats on making it to university!

I'm sorry that happened to you. The worst part is waiting. I'm not saying that transplants are the worst thing you can get, but at least with everything else, you make an appointment and get treated. With transplants, you have to wait, and it's absolutely, unadulterated hell. I got two calls each transplant that I might have a liver, but they ended up going to someone else and that is even worse.

I'll be honest, I did not do well mentally pre second transplant. I have OCD, but it got REALLY bad while I waited. I would spend entire nights cleaning and organizing just anything that bothered me. I couldn't sleep and when I did it wasn't very good. I'm not one to talk about my feelings, but eventually mother caught on (since I did this without her knowledge to cause her less stress) and I went to consoling. It definitely got better and I just drove myself into school, but I tend to get very obsessive on one thing when I'm stressed, which isn't healthy.

I think you should consider consoling, at the very least an online support community. I've never been in the shoes of someone who's watching and caring for a transplantee, but my mother definitely has PTSD from the hospital, while I don't, so I can imagine it's at least as bad. Feel free to PM me, I'll look around tonight for some support communities and link them in the post, but checkout r/transplant . Take care of yourself and thanks for the kind words!

My partner had 13 surgeries before he was 10 yrs old and ultimately lost one of his kidneys. Twenty years later you would never know he went through that but his mother is still traumatized.

Pretty much the same for me. I'm pretty normal, but my mom can barely go into a hospital, especially one I spent a lot of time in, without having a panic attack. Even just getting on the plane or car to go to the hospital for an annual check up (since it's out of state), she's a nervous wreck when packing.

Thank you so much! I've been so much more concerned for him that I haven't really been thinking about how I'm processing it. Those are awesome suggestions, I appreciate it!!

Of course! Please take care of yourself! You owe it to yourself and when you're in better emotional and physical condition, you can help your uncle out more. He's very lucky to have a great family member like yourself!

Did the transplant benefit your UC at all? I never thought of liver issues as possibly being related to bowel issues, but saw someone else comment who had the same combination of issues- is it common to have this combo? Or are they completely unrelated to each other?

I mentioned in a previous comment that in pediatrics, PSC seems to come paired with UC. As far as I know, and have experienced, they have no effect on each other, my UC has been very well managed up until this recent flare up, even during both my transplants I had only very small flare ups that lasted only a day or so.

What meds are you on? Hopefully not prednisone

Unfortunately I may very well never be completely off prednisone. I'm on a higher dose for a few weeks since my UC is flaring up, so that sucks :(.

I'm also on Prograf and Azathioprine and a couple of others. I've slowly been weened off stuff like BP meds since I've become more active, but I'll always have to take anti-rejection meds and UC meds.

It took me close to 2 years after my transplants to get off my BP meds. Prednisone really fucked me up with side effects so they took me off of it. I just got celcept and Prograf now

I had diabetes for 5 years due to prednisone, so I feel you! I still have very light hypertension (but that's mostly genetic now and I workout and eat healthy, so it's lowered it to an acceptable level). I've also got cataracts and had osteoporosis, so yeah, prednisone sucks!

I've been on prograf and azathioprene since my first transplant, they work well for me. Hope you're doing well!

What's the worst medicine you've been on side effect wise for you?

Short Term: Rapamune, and anti-rejection drug that caused respiratory arrest.

Long Term: Amikacin, a very strong antibiotic I took IV for 6 months after becoming septic and lost about 60% of my hearing.

Oh shucks both are pretty bad. I feel for you.

It's all good, I cope. At least I didn't loose all my hearing!

Does it feel any different to have a different/“new” organ?

Somewhat. Both times I acquired different tastes for foods. I drink quite a lot of milk now and like pickles a lot more than I did before the second transplant. But other than that, I feel pretty much the same, but definitely more thankful that I'm living and doing well!

Hello, good luck on your continued recovery!

Did your UC have any impact on your primary sclerosing cholangitis (exacerbating symptoms, hindering recovery, etc.)? Also, what got you interested in horticulture?

Thanks for the kind words!

It seems that in pediatrics, PSC comes paired with UC, I'm unaware of any links between the two, whether one causes the other or if one makes the other worse or better. My UC has been very well manged thankfully, so I haven't had too much problems.

To answer your other question, I become interested in horticulture after reading this article while evacuating from Hurricane Matthew, I hope to receive my Ph.D at this uni on day!

https://www.nationalgeographic.com/magazine/2017/09/holland-agriculture-sustainable-farming/

I have the same 2 diseases. 30 now and had them since I was in my teens. Dont need a transplant yet but it seems to be inevitable and I've been through all the pre-transplant screening and testing so that things are ready in case my condition goes south suddenly or I get liver cancer or something.

The uncertainty around all of this is ruining my life. It's constantly in the back of my mind and surfaces every time I need to make any sort of life decision. I am absolutely terrified of having the transplant and not because I'm afraid of death, but because I'm afraid that all roads and all outcomes from the transplant will result in me suffering, and the only variation between outcomes is just how much suffering there will be (and I already feel like I suffer a fair bit as a result of UC). A big part of me doesnt even want to go through with it but I feel obligated not to just give up on life for the sake of my family, my wife, my dog, etc. and potentially any kids I might have by the time I need to have this done.

So I guess my question is, is there anything you can tell me that might make me feel even slightly better about this? I feel like I desperately need someone to tell me something to the effect of, "Of course this procedure is serious, it's a big deal, etc. BUT it's not nearly as big, bad and awful as you think"

Well, I would be lying if I said transplants SUCK. It is long, it is painful and it is emotionally and physically draining. BUT, if you're taking care of yourself and you're listening to your docs, I have no doubt that you and most of the people will make it out better than before, even if you have a few bumps along the way. I have never met someone who regretted their transplant, even if their disease reoccurred afterwards (like myself). Just the ability to experience existence is incredible in it's own right if you really think about it.

I would also be lying if I said that transplants and PSC are the worst thing that can happen to you. There are worse transplants (like intestinal and lung) and much worse diseases. You sound like you're aware and able to write, speak, communicate and walk, drive and eat and drink. That right there is considerably more lucky than many others I, and most likely you and everyone here, has met or even passed on the street.

So yeah, they suck, but it's also not the worst thing that can happen. Honestly, the more you think about, the worse you're going to think it's going to be. I would try to be thankful that you're relatively healthy now. I know that's easy to say, I get it, I hated (and still kinda do) when people say it, but it's true, try to imagine NOT being able to do something you do everyday, or like to do. For instance, I had a PIC line for 3 years, which meant I couldn't take a shower or go in the pool for 3 years when I was in middle school (in Florida, mind you). Now, nearly every time I go swimming or even take a shower I think to myself, "Holy shit remember when I couldn't even do this? For 3 YEARS". You know? Just try to be present, I guess is what I'm saying. You don't realize how good you have it until something is taken away.

Stay healthy and happy, my friend!

3rd times the charm?

Joking aside, might i ask why you needed to get a 1st transplant?

And a 2nd?

I would outright decline a third one to be honest, I highly doubt any doctor would do it anyways since it'd be sure a high risk.

Both were due to PSC, my liver scarred due to the inability to flush out highly alkaline bile and essentially digested itself. The disease is in the bile ducts, which you can't 100% get rid of (as far as I know), so it came back after 6 months past my first one. So far, no signs of it coming back!

Sothe girl didnt make it? :(

No, she made it. I haven't seen her since the last check up where we both were at, but she was doing very well and got out of the hospital sooner than I did post transplant. I met her and her mother 3 times and they were very nice and despite being Muslim, gave us an Easter basket and card on Easter!

Hey, I have your exact combination of diseases, although clearly much less severe since I'm 25 and my liver still works...sort of. From your experience, is it an inevitable procedure for PSC patients? Do you still have liver issues after the transplantation, or are the meds only for the UC? (I recognise a lot of the names, I tried most of these myself but thankfully I'm off the cortisone and azp). And if I get a liver donation from a relative, do I still need to take anti rejection drugs? Thanks and I wish you the best of luck in your health struggles.

I hope you're doing well! have only met one person with PSC, so I couldn't say. He was diagnosed when he was 31, and needed a transplant after 6 years. Some people have PSC that is well managed and won't spread or become life threatening for a long time, if ever.

The only time you're not going to need anti-rejection drugs is if the organ was grown from your own stem cells, no matter how closely related the organ was from, it still differs genetically and thus will be viewed as a foreign object and rejected. Hopefully stem call grown organs will take off within our lifetime and we can have people who don't need to go through rejection!

So far most of my issues have been from the UC (a few hospital visits because of inflammation etc. but nothing life threatening), I've only been told that I "might eventually need a transplant" rather casually and I've been given Ursofalk for my PSC. I have heard that there's some minimally invasive procedures that can open up your bile ducts, or that you can take bile supplements to improve digestion. I don't digest food that well because it's absolutely impossible to gain weight, and I'm sure the ulcers in the digestive tract don't help either. Obviously those are for people who have a slower-acting version of PSC, they won't do any good if your liver destroys itself within a year. Stem cell research is definitely the future, and if I ever need to get a new liver, I hope it's a copy of mine (minus the PSC, hopefully). For the time being my biggest worry is how long until I start having liver issues, which I guess is a first world problem among PSC sufferers.

Well, sounds like you've got the best version possible given the crappy cards you got dealt! Unfortunately, a lot of this stuff is out of our hands. All we can do is take care of ourselves, take our meds and listen to the docs. I think you got a long, good life ahead of you, even if you do need a transplant, the methods and meds are only getting better!

Yeah, I guess you're right. The one thing that I can do that makes a difference (apart from following professional advice) is eating properly and exercising. Some substances like sugar and alcohol are very irritating, both for the liver and the intestines, and I'm sure that cutting them out can only be good. I've developed a very keen interest in this kind of stuff after learning about my diseases, and maybe I will take it further and study to become a nutritionist.
Thank you very much for the chat, you are truly a very compassionate person to be able to empathize with people who are "luckier" than you. I hope medical technology and of course healthcare systems both improve drastically within the next few decades, I remain cautiously optimistic about the former, not sure about the latter...

Thank you! Problems are relative, by many standards, I'm VERY LUCKY. Nutritionists are extremely important and you could make a difference, especially since you have medical issues yourself, you'd be able to communicate and connect with patients more than someone who didn't really have to worry about their own nutrition.

I think it's only a matter of time until the healthcare industry and technology improve to be able to take care of everyone, hopefully sooner rather than later! Good luck and keep on keepin' on!

Hey there! Quite a gripping story, glad you’re still here. While I was looking at the “proof” pics I noticed you’re wearing a watch on a green NATO, and something in me immediately told me you’re a fellow watch guy, though I couldn’t quite make out what the watch is. Lo and behold, you are indeed! My question would be, how did you get into watches, and how did you get into watchmaking? I’m looking to get into watchmaking as a hobby, and potentially turn it into something else, so I’m wondering what your experience was like.

I knew someone was gonna ask this given my account history! I originally just wanted to service my own watches that I was slowly collecting, since they are (obviously) much cheaper to buy broken. I'm still an apprentice, but not as often as I used to be.

I was lucky that I have a local, competent watchmaker who is very nice and a great teacher who was very happy to teach me. I've been there for over a year now and slowly started acquiring tools via buying his older used tools and then taking small repair jobs for some money and investing into more and better tools. It was a great experience and I love it. Feel free to PM if you want!

Did you consider becoming a Doctor knowing what they can do? Coded, heart attack, transfusions, and you're still here!!! Bravo. Hope it's all behind you now.

I have, and I would have become a pediatric liver transplant surgeon (obviously). But I'm not sure I can spend nearly 18 years before practicing medicine. I hope that one day I'll be well off enough to donate a lot of time and money to pediatric transplant centers and help kids and families get through it. It's really unlike any other type of surgery out there and it's extremely emotionally traumatic and draining, so I hoe one day I can help ease it, even for just a bit for some!

What made you decide to study environmental management? And what is your dream dream job once you get through grad school? You mentioned automation, are you looking to work on designing greenhouse automation machinery/programs?

What's your favorite plant?

Congratulations on the Liverversay and I wish you and your liver many more happy years together!

Thanks for the kind words! I only applied to 2 colleges and enrolled as an anthropology major to become a museum curator but after becoming a docent for a while at a local museum I realized it was really repetitive and very hard to get into, so before the first semester started I enrolled in environmental management for the money and the good job growth. I ended up falling in love with the science and I also love to eat and cook, so it worked out! I'm mainly interested in aquaponic systems and automation, mainly AI and machine learning. It's pretty small, but growing fast, so I'm arriving at the right time!

I hope that after researching for a decade to open up my own greenhouse business. I'd like to have very futuristic and sleek greenhouse complexes the produce food in a closed system (no outside inputs, or at least very minimal) but are also open for university use, tours and restaurants within the greenhouse where you can choose your own fish and vegetables for your meal. But we'll see, it won't be cheap!

My mom is a liver transplant patient and she was warned against gardening due to fungus in the soil, and it was her favorite hobby. A man in the unit with her rejected 7 years post-transplant after he contracted something from soil, so that didn't help her anxiety. She is 10 years post transplant and would love to garden again. What precautions do you take when digging in soil and do you know any good resources I could send her way to ease her mind? I would appreciate it.

I work in a lab setting about 90% of the time, and we do analytical chemistry, so we are very careful not to have the soil contact our skin. However, in the field we wear long pants, boots, long-sleeve shirts and wear gloves so as to make as little contact with the soil as possible. So I'd just say cover up and you should be fine, definitely make sure any open wounds are far away from soil.

That's so cool! What a cool dream! I wish you all the best!

Thank you! I wish you the best as well!

Are you a Gator? Noticed your gator hat. :)

Hell yeah my dude. I'ma junior at UF right now.

Nice, 2nd year here. CALS or College of Engineering? Noticed you are a agricultural engineering major.

I'm actually in CALS, the SWS department. Kind of straddling between choosing engineering or horticulture for my M.S. at the moment.

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Call the suicide hotline, 1-800-273-8255 and talk to someone ASAP.

PSC-Er checking in here too. Got my first surgery at 19, transplant from my brother 2 years ago at age 29. Had a baby 6 months ago. Thankfully no UC!

Do you still have pain in your liver? Do you still have fatigue?

How do you deal with the near constant sickness? How do you stay positive?

Congrats on everything!

I never had pain in my abdominal area often, it was mostly referred to my left shoulder or right calf, but thankfully the pain is very rare and not nearly as bad!

I do still take naps, despite being 21, LOL. It happens, but you know if I can afford it, I try to give my body a rest when it says it needs it.

I thankfully haven't been sick like you're talking about in a long time, but it was hard. I would get REALLY bad shooting pains in my calf or shoulder and just sweat and couldn't eat, and if it was really bad when my bilirubin was high, I would scratch my feet until they bled. It was really just knocking myself out with benadryl and drinking a lot of water. Later on as I got closer to transplant, I was given Fentanyl patches that really helped and I was right on the verge of becoming really addicted, I would sweat 30 minutes before the patch had to be replaced, but it REALLY helped.

Positivity is really just staying focused on what I have going for me. Like I said, out of 6 people I knew that had transplants, only one survived. The last one that passed was only 4 months younger than me and crazy smart and funny and the fact that she had such problems, much worse than mine, yet was still positive and outgoing and striving for greatness was a great inspiration. I know many others that have it much worse than I as well. I mean, I can walk and talk and communicate and I'm in college and can drive. I'm not mentally deficient and have at least some semblance of a personality, I'm well off in my book, even if I had some shit in the past, I think it made me a better person.

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Eat. I couldn't eat for about 2 weeks, and I could barely have more than an ice cube. I wanted BBQ very, very badly. The first "solid" meal I got was jello though, so better than nothing but definitely not BBQ!

Hey OP, both excited and sad to see other PSC patients showing up here. I've never met another in person. You mentioned your university. Are you living in Florida? If so, be sure to check in at the transplant center in Florida Hospital Orlando to keep on the ball. These guys saved my life and the level of care and compassion they have is beyond words.

Best of luck with your health and life.

I am Floridian, born and raised and still here, for now. I wasn't even aware there was one in FL besides UF (which has dissolved and reformed like 3 times) and Miami (which was not pleasant when I went). I'll be sure to look into them, best of luck, hope all is well!

Favorite condiment? Thank you

Oooof, that's hard. I really like aioli a lot (which is just fancy, homemade mayo that's flavored, typically with garlic and herbs).

I also really like remoulade and tartar sauce (especially on crab cakes, one of my favorite meals, seafood in general is my favorite thing to eat).

Why do you deserve 2 when there's people that have been waiting years for just 1?

I didn't/don't. But it was hard to confront the fact that I would die a long and painful death when I was only 16. I'd refuse a 3rd one for sure.