IamA 23 year old male awaiting liver transplantation in South Africa. They told me the waiting period was anywhere between 2 days and 20 years. AMA

Dude you're literally me in another country... I'm 24 and also have PSC and UC. I do have the additional curveball of an autoimmune disorder called Autoimmune Hepatitis. Where my immune system recognizes my liver as a threat and attacks it. I've been on several different treatments and I just started Remicade for the Ulcerative Colitis which is an infusion treatment. I no longer am in need of a transplant, but that has only made me realize how lucky I am. I'm currently on an immunosuppressive treatment with some additional steroids as well. Did they put you on prednisone by any chance? Stuff can be miserable to say the least.

My biggest symptoms were chronic fatigue and many trips to the bathroom. If you ever want to talk man, I'm totally here for you. Please don't hesitate to reach out, I know some days are worse than others and it gets tiresome at times. Sending you nothing but good vibes. Looking forward to hearing from you. You're gonna get through this!

Awesome man! I'm glad you got out the transplant phase. But yeah I was on prednisone for a while. Not great. Tasted nasty. And yeah the worst one for me is probably the itchiness, and the fatigue can be a pain sometimes, but the itchiness kills. And it's great to find other people who can deal with the same shit I'm having to go through. I hoping for the best in the future, and staying positive and upbeat as always :D Hope your health comes right. P.S. As for the UC, I've never been on Remicade, but I'm hoping I'll never have to. My UC is in remission at the moment, so I haven't had to deal with it thank god. Hope it works out well

At times I've felt defined by some transient malady like influenza or back pain. With suffering as persistent as yours what helps you best overcome negative moods?

Well with influenza and back pain there's very visible symptoms and side effects, but I've found that PSC has very few symptoms, that have the chance to take over my everyday life. I do still have trouble eating, which can result in me getting hangry every now and again, and I get persistent itchiness - which results in persistent scratching. But, as long as I eat, and if I can keep myself surrounded with the things I enjoy (listening to music, writing (one of my hobbies) or being around people I enjoy), it can really take the edge off. And I just try to stay positive. You learn to grow with the suffering :)

I have forwarded your reddit to a Jewish friend in RSA who son is a very good doctor in public hospital in JHB. One never knows who knows who and can help shortening your time frame. His name is J. WITT.

Wow, thank you so much. I appreciate the help and the support. I will look into and see if anything comes of it. You're a saint

I also have PSC and UC and am waiting for surgery to remove my colon. Have you talked to anyone about the possibility of a bile duct bypass? They take part of your small intestine and make an additional relief duct from your liver. For me it basically entirely cured my PSC when I got it more than 15 years ago and restored liver function to normal, I highly recommend looking into it...

What /u/cbrown1311 /u/DrSlappyPants and /u/1337HxC have all concluded is that I do in fact have strictures and blockages that are too sever to do a bile duct bypass, unfortunately. Or else that would've been a very feasible option. The doctors were talking about removing my colon, because it can create quite a few problems when it comes to liver transplantation if the UC decides to act up. Luckily its started to clear up fairly recently and it doesn't look like they'll have to go through with it anymore, which I am extremely grateful for. I hope your colon removal goes well, and best of luck. I can't imagine having to live with a colostomy bag at the age of 23.

Is the persistent scratching due to phosphorous build up? I'm not sure how that works with liver transplants but I've had kidney transplant and could never stop scratching!!

My doctors say it's because my bile ducts are clogged, which causes a build up of bile, which in turn causes my liver to become enlarged. I'm not too sure how or why it causes the itching though, but it's definitely the worst of the few symptoms I do have

Hello! I was born with Biliary Atresia, my liver did not have ducts. Because if this my liver built up bile- and I became very unhealthy. At 9 months old I had a liver transplant from my adoptive mom in 2001. She's still alive and with me today, we both are healthy after the surgery. I really wish you luck with finding a donor, living or deceased. I attend my country's national transplant games every two years. There you get to interact with recipients, living donors and donor families. They're all so grateful and happy. So I guess I'm trying to say, if you meet your donor or donor family, you'll form an unbreakable bond with them. If you have any questions just message or reply here :) good luck again <3

Edit: I should do an AMA about the transplant games and the transplant procedure. I don't remember anything about the transplant since I was young- but my mom fills me in on stuff. Fun fact: my anniversary was Tuesday. And on Sunday Thomas Starzl, the person who did the first liver transplant, successful and unsuccessful, passed away.

Thanks so much, it's great to find other people who are living happy and healthy lives after they've gone through transplantation

bilirubin

That's the one

Ugh, sorry man. Awful. I have severe IBS so I have the tiniest inkling of the irritations you are going through....... it's amazing how effective chronic illness is at destroying one's social life. I orbit the bathroom, and subsequently have no friends or life, good times.. (First generation South African American over here btw :D)

It's unbelievable on the impact it can have. Just the limitations it puts you under and the stress & worry it can cause. I've been lucky, but I've also had to survive the entirety of high school with it. I had to give up sport, lost 10kg, and watched as my hair started to thin. It was a lot to deal with when you're only 15 years old. But, I feel as if I'm over the hump now. I've had complete control over my colon, except for maybe some urgency every now and again, but otherwise I've managed to kick it into submission. I hope yours comes right, and that you don't have to sacrifice your social life for something so frustrating.

Does it get easier or harder the longer you wait?

Um... I have noticed that some of my symptoms have started to get a little worse than what they were, but nothing compared to what I was dealing with before I was diagnosed. Not drinking helps, because there's less stress on the liver, but the medication is helping as well. So all in all I think things have gotten a lot easier than what they were. The waiting hasn't really been a big thing for me. It all seems to have flown past in a blur. But I'm hoping that I can simply get it out of the way and done with so I can move on with my life and gets this part [of the mission] over and done with.

Despite never having needed, nor knowing anyone who needed an organ transplant, I'm a huge believer in opt-out organ donation. May I ask your stance on this before and after your diagnosis, and if your friends and family have an opinion on this?

Well as far as I know South Africa doesn't have an opt-out organ donation policy, you either sign up to be an organ donor or you're not. And I hadn't heard of such a thing before I was diagnosed, but it does sound like a really good idea to be honest. I completely understand some peoples idea to keep themselves "whole" once they pass on, for whatever reason that may be, but becoming an organ donor is essentially giving someone else the chance to carry on living, or live a more fulfilling life. And I feel like, if there are no objections by relatives, or on the part of the deceased, then there should be no reason why we can't simply use what someone else has left behind, to help a number of other people. As for my friends and family's opinion? I'm sure my family would endorse the idea of opt-out organ donation, and likely most of my friends, but I haven't asked.

I also have an autoimmune disorder that's been very challenging - mine mostly affects my kidneys and nerves. I've found that my friends and people i care about dont really understand/comprehend the direness of my situation even when im in the hospital. As such i feel like ive lost a lot of my close friends. Have you had similar responses, if so have you coped with this issue in particular? Hope you get your liver transplant. Will pray for you.

People can often sympathise with me, but ya, in the end, they don't really understand the situation and what kind of effect it can have on you. For me, mine seems to be subtle and draining. Almost as if I don't really notice the effect it's having on me, until it's quite bad. But my friends and family have been hugely supportive, whether they understand what I'm going through or not. They still know that I have to trip back and forth from the hospital every so often (spending days at a time there), and they seem to have a general understanding that: no transplant = not good But what's nice is they still treat me like the same person I once was (without the ability to consume alcohol), they just ask a few more questions about my health is all. I hope you find good health, and better friends. Thank you

As someone who saw his grandfather deteriorate with MS for over 20 years before he passed, people only have so much sympathy to give. At a certain point you just break and stop caring.

At least that is my experience with long-term suffering.

/u/trikstah and /u/Sunshine_Reggae have gone into this, but I didn't want anyone to give me any sympathy. I wanted them to acknowledge my sickness (ask me how I was doing every now and again, visit me in the ward if need be, etc.) but also carry on treating me like they did before. It's like nothing else changed, but my friends were still aware of it. I was still one of the guys, but I they simply asked how my health was every now and again. And that's the only thing I could've ever asked them to do (which I didn't have to) and I'm so glad I've got people like them in my life. If it wasn't for the people I've surrounded myself with for these last few eons, I wouldn't be here. I wouldn't be who I am today. But I'm lucky I haven't had to deal with long term suffering, because I think that would happen to me as well. I would just start ignoring it and stop caring (but that's the same case for the patient as well as family).

Hey, fellow South African here :). How much sooner do you think you could get a transplant if you were in a private hospital? Good luck on this journey friend.

To be honest, I'm not really sure. I was at a private hospital and they recommended me to Groote Schuur. I haven't been back to a private doctor since, and I haven't asked for a second opinion. Thanks for the support

I have heard that having such an intimate comprehension with one's own death changes their attitude and approach toward life quite a bit. Has this been true for you?

It definitely can. I always imagined I'd live to the age of 80 (just an idea of my time), but when I was diagnosed it sub-consciously changed to 40. They didn't tell me how long I had, but the idea that I could be living a shorter life than what I was expecting came as a bit of a shock. I realised that I had already lived half my life. I also found that I started caring less for inane day to day activities. If I wasn't enjoying what I was doing, there was no point. I would rather be enjoying my life, doing shit that I really want to be doing, instead of going from day to day, simply ticking boxes. I've found that I'm more positive, even happier than what I once was. I find the beauty in the little things, and enjoy every little moment that's handed to me on a silver platter. You create an appreciation for everyday life when you're confronted by your own mortality. The idea that your existence will come to an end at any point, is a humbling thing. You stop seeing the negative (at least after you're able to get over the initial shock, and find your path). Because you realise that there's no point being negative. Why spend the rest of your life being grumpy, frustrated and annoyed, when you can be actively happy, and bring out that happiness in other people. Because it's contagious. A simple smile can go a long way. I also started living in the moment more. Carpe Diem and all that latin

Thanks so much. Very inspiring. I'm thankful you get this silver lining. Maybe life isn't so much about length but more about amount of joy brought.

It's not about how long your life is, it's what you decide to fill it with :)

What's the hospital system like? As someone studying to become a nurse in a different country, this kind of stuff is always interesting to me.

Is there anything you feel like the staff has done really well? If you could change the hospital system, would you? And how?

What's your favourite thing about South Africa? Should I visit? If so, what should I make sure to see/do?

The hospital system is interesting to say the least. A lot of the best doctors come out of our public hospitals because of the kind of stuff they have to deal with (especially in the ER), but because there's a metric-shit-ton of people, they often don't pay too much attention to your case. They do what's necessary, and that's about it really. And I'm not blaming them in any way, shape or form; they have to deal with an immense amount of shit, but sometimes (if you aren't persistent) they can push you aside quite easily (if what you want isn't entirely relevant). But even so, the doctors and nurses are always nice and (almost always) happy to see you. Most remember my name, from two years ago, and they always greet with a smile. If I could change something, I would destroy their filing system with a f*cking mallet. Every patient has a hard copy of their 'file'. This file contains all the scripts from your doctors appointments, procedures and any results you may have accumulated over the time you've attended the hospital (I'm talking about Groote Schuur Hospital - really not sure about some of the other public hospitals which could be worse). If you want to do anything at the hospital, you have to collect your file, which involves taking a number and waiting. Once you get it, you have to go find another number and then wait some more [you get the idea.] So that's what I would change. I would make the entire filing system digital. As for South Africa, I love it. I haven't travelled (I stay in Cape Town, and I've travelled up the garden route a bit, but not much else) but the people I've talked too all say they end being called back. If you gonna come to SA I recommend Cape Town first and foremost. Its a big tourist destination, and for good reason. The mountains surround you from all sides (even if some people consider them a little small :P) and there's the ocean on the other side. The weather's great (besides being quite windy from time to time) but my favourite part of it all is the weird mixture of people. The tourists and locals are usually always in good spirits, and pretty chilled (possibly because of the weed). But once you know your way around, and know how to handle everyday life, it's a little pocket of bliss (coming from a local Cape Tonian though :P)

Have you been told that smoking weed is OK by your transplant team? At the hospital where I work (in the US) our transplant doctors would view that as a red flag and it would likely delay or potentially exclude you from transplant. It may be different in South Africa, but I would hate for you to miss out on a transplant for something so trivial. If you haven't already, make sure to ask what things you can do to make yourself a better transplant candidate (including what to avoid).

I have not had the go ahead from my doctors about smoking it, and they don't know either. I use it because it helps to improve my quality of life, and I've found it to be more beneficial than potentially harmful. I struggle to eat and smoking helps with it. By no means is it the healthiest thing I should be doing (especially with a liver condition), but I know the effects and consequences it can have. At this point in time I feel well enough to indulge every so often, but I do take breaks from it every now and again. If my liver condition were to get much worse, or I was to go in for surgery, I'd like to think that I would stop. But for the mean time, it brings a little something to my life, so I enjoy it. I have asked what would make me a better candidate, and they told to eat as healthy as possible and .... that's it.

So is the cannabis prescribed? I'm not sure what laws are like in SA wrt weed. What's your favourite strain?

The cannabis isn't prescribed, and it is illegal in SA, but it's very common and there's almost a relaxed view towards it. There are still a lot of drug busts from time to time, but there's never short in supply. My favourite strain? There's the locally grown Durban Poison which is nice, but at the moment I've been smoking Bubble Cheese (here they call it Fire Bubble Cheese for some reason)

Fellow South African here, firstly I really admire your strength and good luck on your journey further. Wasn't medical marijuana recently legalised? I mean, you'll struggle to find a doctor who's ahead of the curve and will prescribe it, but as far as I know the oils are being made with low THC content and can be bought legally (I stand under correction) from some of the farmers currently growing it.

You can legally buy CBD oil which has no THC in it. And yes medical cannabis has been talked about very recently, but I'm not 100% sure where they're at with that yet. But I do know it's a very limited number of cases where they're allowed to prescribe it. Mainly cancer, MS and intense chronic pain. Can't remember the other ones at the moment. But it's a step in the right direction :) And thank you for your support

Does smoking weed alleviates the pain and suffering?

I find that it helps me with my appetite, as well as my general well being. I don't drink alcohol anymore (I used to be quite the drinker and party animal - since I was 15/16) so when I go out with friends now I usually bring a joint or two along.

Is a partial transplant from a living donor on the table?

When I asked about that they said that partial transplants were more common among children, because they "grow into it". The organ grows with you basically. So I don't think so. They might be able to take the larger half of the liver, use that, and then use the smaller half for a child

Did you get a reason for the massive difference in time for the waiting period ? And about how much per year are you spending on medicine in the mean time?

I got no reason for the time difference. It's just how South African public hospitals work. I think it's also just a thumb-suck on the part of the surgeon, partly because if my health were to deteriorate further, then I would likely get a liver sooner (but the quality of the liver would be compromised because they would go after anything they could get). There's also a number of factors that they look for when trying to find a suitable match, such as blood type and health of the organ/donour. I don't pay any money for my medication (except maybe a small admin fee) because of the type of payment account they set me up with. But I do have to wait between 5 and 7 hours to get my meds. If I have an appointment with a doctor or if I'm going in for a procedure, it can take even longer.

Good thing you don't have to pay for them, because that would be a ridiculous amount of money to have to pay. Good luck, hope you get a new liver soon!

Ya it's a little something that I don't have to worry about, which I'm grateful for. And thank you :)

Was the illness very gradual, eventually leading to a few hospital visits and doctors asking more questions, or was there a severe episode of symptomatic influence that hospitalized you suddenly?

This is how it went down: 1 March 2016; went to a friends 21st, got pretty drunk, the next morning it felt like a jackhammer was slowly drilling into my brain (a worse hangover than what I expected). I was extremely yellow apparently. (I had had yellow eyes since new years, not too sure how long before that). About a week later, I went to the doctor because I was sick with flu, and I needed a sick note for work. The doc said "you have very yellow eyes, I think we should do some blood tests." Went had those done, realised it was my liver acting up, got recommended to a liver doctor, went to see them, did more blood tests, got booked into the ward for 5 days where they did 8/9 different tests (they checked everything, to see if they could find anything else wrong with me - they didn't, besides a severe case of lingering UC (Ulcerative Colitis)). So it was sometime during those 5 days, that they told me I'd need a transplant, as well as that i should stop drinking and smoking cigarettes. After they released me, I went back to my everyday life. Work was a little annoyed that I had disappeared for a week. My friends were wandering where I'd got too, and then things seemed to fall back into place. It was only after about 6 months that I went into a bit of a spiral. Started smoking more weed than I'd like to admit (i had completely cut out alcohol, and i guess i may have used the weed as a substitute for a bit), abruptly quit my job, then spent about a year in bed feeling sorry for myself, and again, smoking more weed. It was at one point that I snapped out of it, realised what I wanted to do with my life (you could say i found my purpose) and then I slowly but surely started getting my shit together. These days i don't drink at all anymore, i still smoke a bit every now and again, and I'm slowly creating a happier and better life than i could have ever known :D

What is your purpose if you can share? Also how did you find it was your purpose. Like how do you know it is it?

Do you have clarity now?

I've always been a creative. Since I was a kid. It's just how my mind works. Never very logical, or structured. And throughout high school I found myself staring out the window, doodling and creating odd and weird tales (more thoughts that came to mind, instead of tales). And I loved my art, and english. I was always good at both, but never really knew what to do with it. Once high school finished I studied Copywriting (the written form of advertising). After I finished studying I went into an ad agency (even though I kind of knew I didn't like it all that much. Copywriting is more headline driven writing, but I preferred doing longer copy, such as blog writing and website content.). It was around this time that I was diagnosed. After that happened I quit, and took my depressed form of a gap year. One night, once I had started to collect my thoughts (after a couple months) I was quite high, and I had a sudden realisation that what I always wanted, in all my life, was to go live in a far off world. I've always loved fantasy. I've loved the ideas of gnomes and pixies, fire breathing dragons and damsels in distress. (I also read a lot) I love that kind of fantasy stuff. And what I should be doing, is pursuing a career in story writing. In narrative writing. I knew that it was a potential pipe dream, but fuck it. I thought I might as well give it a go (I found that that's what happens when you get your life cut in half. You stop doing the things you hate, and you start doing the things you really enjoy and love.) Anyway, I started pursuing a more realistic career in content writing (blogging and corporate writing) which still supplements my need to write. And then I try to write stories as a hobby. Hopefully creating a short film soon, if I ever make the time to get it done. And how did I know it was it? I just knew I guess. It felt right. It felt good. And it still does.

Are you white or black? Do you think that your race affects your chances of getting a transplant?

Definitely not. The staff aren't so inclined. It could be different in other hospitals, but not where I was

just gonna say it outright....have you considered . . . *ahem* . . . """taking""" a liver?

I understand finding matches can be a little tough. But seems to me you might be able to post an ad anonymously on Kungawo's List (or whatever the equivalent of CraigsList is, in RSA).

Schedule a meet-up, and *WHAM*

Got yourself a fresh new liver!

Have you tried doing a backyard transplant? It's just messy and frustrating. And the blood is just impossible to get out of your clothes. And I think our equivalent to CraigsList is Gumtree

I understand that autoimmune disease is possibly inherited. Any of your other family members have the same disease?

That's one of the first things they asked, and no I don't know of any that do.

Do you feel like South Africans are less likely to sign up for organ donation? I signed up as an organ donor ages ago, but know very few other South Africans that have.

I don't think we're less likely to sign up, I think there just isn't enough awareness about the need for it. Especially in the poorer communities, but I'm not sure about the conflicts they have with organ transplantation and their cultural/religious views.

Why don't your parents have another baby, whose liver they can transplant to you?

I need a fully grown adult liver unfortunately. Maybe we'll try that next time though