Post-liver transplant I suffered terribly for 10 months with “Survivors Guilt”. Many people can also experience PTSD, which can happen at any time. I knew of a lady who lives in Staffordshire who experienced PTSD some six months after her transplant. I had no help at the time, as we were told to sort of self-isolate and avoid GP surgeries and hospitals. My local “Mind” charity had a 6-month referral waiting time, so there was no help or anyone to turn to. That feeling of guilt was finally lifted when I came across a book called, “The Inflamed Mind” by Prof Ed Bullmore. There is a nice video he’s put together which explains why. It turns out that the assault upon the body due to the transplant causes an inflammatory response by the immune system and this in turn can alter a person's mindset and mental state. Once I understood the reason behind the survivor's guilt, it gave me a form of acceptance and closure. That dark cloud was lifted: kzfaq.info/get/bejne/n91nlZNe3rrShGQ.htmlsi=WXMVYZPz2iVFtkKI This may be of some help to others too.

Great session guys, thanks!

I was just diagnosed today

Is it a blood test to diagnose Wilsons disease?

What an incredible woman , Thanks so much for sharing your journey My sin is listed for multi visceral transplant in addensbrooke, so waiting in "the call" This guve me so much hope, you literally described my sons life , Thank you cloagh, and the very best of luck health in your future x

Inspiring! Ive had 2 liver transplants from psc. 2006 and 2019. Ive psc back again now but so far all is ok. Great to hear of other successful stories and glad you're doing well yourself! Keep well...

Great to talk as always Danny

I am 49...doctors mentioned I may have it as my bloods been high since 2018 but not concerned enough to treat..am concerned so interested for everyone's opinion..they also mentioned gall stones...but I have no symptoms of either.

funny you mentioned the excessive water drinking after your transplant. I drink a lot of water already, I drink between 3-4 litres of water a day and sometimes I drink a lot of water in the night as well. Must be related to the liver.

that's a great point there: "I felt sick, but I've always felt sick." completely understand and relate to this 19:33hahaha, yes, you don't really get sensitised to the process of chronic liver failure. I think you just got desensitised to your liver problems and you didn't notice that you were experiencing liver failure. when I was first misdiagnosed psychiatrically, it was because everyone thought I had paranoia. I stopped eating for about 2-3 days and I just thought, "no, I'm just not feeling like eating, I'm just in a bad mood, it's nothing serious." but I was 19 and 35kg at that time. so everyone got mad at me and I had to get get to psychiatric care. it was actually so hilarious, I think they gave me every diagnosis possible. and they would change my medicines every month and I'd be getting sugar drips at the hospital at least once a week. they kept getting nurses to follow me around and I was so annoyed, they thought I had paranoia or something so I would get followed by like 2-6 nurses and they would tell me to eat food but you're physically incapable of eating! I'd just vomit it out or not have any appetite at all. in my case, my psychiatrist eventually gave up after literally every misdiagnosis possible psychiatrically and then I went to Pakistan after a failed karate lesson in which my sensei observed that I wasn't able to move in the correct energy system out put of my human body. I stabilised after about 8 months of chelation and went back to university. and I finished my second year of maths and physics bsc this 6th June 2023. you talk about transplants after around 21:00 so I am learning a lot about that through your conversation with Danny but I think I'm hoping I never have to get one! I'm sorry it was difficult for you to have to think you have to go through a transplant after seeing how difficult it was for your aunt... but looks like it went incredibly well for you! so happy for you recovering so well after the transplant :D you left the ICU so quickly, seems like your body was tired of the disease along with your soul O_O WOAH. I love biochemistry! Amazing! Great choice of study and career! :D yes, that's lovely. getting a chance to enjoy foods and be fully yourself. it's exciting to be in such a phase of post-disease cure. that's so admirable. I initially did healthcare such as pharmacy and pharmaceutical and health sciences but I've just found human stuff so gross. I didn't want to live with all the possible things that could go wrong with my body which is the result of a pharmacy degree. and I was too grossed out about being any sort of doctor. I preferred mathematics and physics because I couldn't stand to do anything related to the human body! but you're doing so wonderful by studying transplant. ha! if only I had the heart for cutting up people T_T yea, after you started talking about autopsies, I stopped watching around 31:23. Well, Victoria, I'm so happy your shared your story with us. It's been amazing to watch. All the best ahead for your future. I wish you well :) <3

Thank you for this interview. I'm so sure that I used to feel the same issues growing up with the lack of health. Yes... I always often thought that everyone else can and I can't. Sorry that you were so restricted. I faced limits with the disease. I sort of understood I couldn't do sport without getting swollen ankles and joint issues so I stopped. Likewise, I used to get severe tension headaches with the chocolate so I stopped eating that too. 9:25 It's so true. I've had such a difficult journey trying to get the diagnosis itself. There's a lot of fear before when you notice your body is so different from everyone else. And then you get the tragic realisation that you're not normal at all. 10:46 Zinc overdosing is that dangerous! I'll comment later on when I get a chance to continue watching the video. Bye for now, :)

Victoriaaaaaaaaaaa it's your old friend Joeeelllllll. Looking forward to finishing this one off!

My son has just been diagnosed. Thank you. He will watch your videos.

Victoria you're an inspiration. So happy for you.

Buenos días! Marvellous. Never tired of these. ! Your channel is improving i see. Revelling site. All the best!

Awesome idea. Happy, blissful, good health and full of abundance New Year 2023 to you my new friend.

I actually ran out of medicines and I couldn't get it in Mombasa for up to a month. didn't have penicilamine for a few weeks I think. I had to get them from aga khan hospital in Nairobi. but this was in the beginning when we didn't know how to handle the condition as we had just received the diagnosis. eventually when we went back to the expert doctor in karachi Pakistan, we managed to secure more penicilamine. and the best part is that it's always great to have access to zinc sulphate tablets. zinc acetate is just really a headache and a lot of nausea and vomiting.

true Jessica... going outdoors makes a huge difference. I feel like I could definitely be doing more with my family for the holidays but we go to Pakistan for holidays and we spend time with our extended family there which is great fun. but we only do this once a year, I'm more hopeful to go to cottage and just feel the sand under my feet once in a while more...

I'm also looking into my lineage and trying to figure out who had it but it makes sense now that certain aunts suffered from it and certain uncles as well. most often I've heard them reaching tragic ends. the disease is a ghastly nightmare. true, having to explain all the time why you can't have chocolate for example. so i was told don't tell your friends not to give you chocolate you should be grateful. but the fact is they'll end up giving me chocolate my whole life in that case (for example) and I'll have to pretend I eat it?/ate it? lol what a strange reality.

Glad you went, and so happy you are sharing your story, glad you received a kidney,

interesting discussion thank you

This was a very informative video to watch. It was also very reassuring to watch. I love that Linda went into teaching young children and education. I think that's a very wonderful career path. I think that I got to learn a lot about how the disease affects the other organs and knowing that it is not the best circumstance to live with though you could always have it worse so to be grateful that you are not as bad off. I think that Linda is very inspiring and I'd love to watch more interviews with more Wilsons disease patients to learn about this disease. One thing that recently came to my attention is the risk of developing diabetes or blood sugar problems because of the use of penicilamine. I'd love to hear more information on this. As well, any other possible problems that could develop from the use of penicilamine that you might have hear a patient developing.

The biomarker came up in my blood test (low ceruloplasmin) and I just got a gene test. This whole thing catches me by surprise as I'm a 20 year old healthy male with zero symptoms, and this was found just on a routine blood test. Now I'm panicking because I've seen how far this disease can go. Thankfully my liver enzymes and ultrasound came back with no damage yet so if there is any Wilsons Disease I've caught it extremely early

Danny - Can I ask if you were positive for the Wilson's gene mutation?

Thanks again, Danny. And thank you so much, Stasja ❤

Thank you so much for your informations about Wilson's Disease. Please continue your work for other patients, great help. Maybe you can do more interviews about this disease. Greetings from Germany, Andrea

Thanks for having me on the show Danny. So grateful we connected.

Great video. Thank you so much Danny for putting in the effort to help spread these stories and information. I am 28 and have only just been diagnosed, and your videos definitely helped me prepare myself emotionally and mentally to receive my diagnosis. Keep up the great work 🙂

Few questions, 1. Did you have an mri and if so, did it show anything wrong? 2. Were your liver enzyme levels elevated?

I have it but haven’t been back to the hospital, I should go back to get meds.

Was in Aruba on vaca in 2002...My body stopped responding to my brain all of a sudden, could not get up from a lounge chair & my ankles swelled to giant proportionsI Very scary! Once home, I went to doctor, MRI was glowing orange in the Basal Ganglia area of the brain, which controls motor skills. I learned that I had Wilsons at age 27. I was fortunate to show symptoms while a 6 week clinical trial for tetrathiomolybdate (Copper Protein Binding Agent) was ongoing. in Michigan. Considering that my other option was death, I figured why not. It worked for me and a woman from Chile . It's a shame the FDA hasn't approved this drug, as the maintenance drug is only zinc. It took several different Doctors to finally get the correct diagnosis! The rings in the eyes are called Kayser-Fleischer rings. It was a tough journey, but I made it!

Danny, thank you for being willing to share your experience. I am also a Wilson’s Disease survivor, diagnosed at age 17. I live in the western US, where people are outnumbered by cattle! I will be checking out your videos! I love that you shared the story of your diagnosis and your liver transplant. I would love to learn more about your transplant experience. Although my symptoms have been mostly neurological, I have been placed in a pool of candidates to receive a live donor liver transplant.

Hi Mate My son is 7 and awaiting appointment in King’s London. How do you manage your diet. Online articles are too overwhelming. Do you have suggestions to follow

Very nice and informative interview. Trust it will be usefull for many people with heart disease who are being on the transplant recipient list

thank you so much for having me Danny, I loved chatting with you, and thank you for advocating for organ donation !

These condensed videos of your interviews are a great idea Danny 😊👌

Margaret is my daughter. The memories of how ill she was brought tears to my eyes. Hearing her talk about how far she has come and how much she has accomplished filled me with pride and hope for a wonderful future. Love you so much.

A great interview! Very inspirational ❤️ Regarding osteoporosis I think it is related to penicilamin. My doctor told me that this medication can increase the risk for it.

What a journey...so tragic and also so joyous 💕...So wonderful that Caroline started her treatment on time and has a son and daughter😊💖 The gene therapy sounds incredible...I hope it works out to be a less aggressive treatment for Wilson's Disease. There is also some very interesting research for antirejection in liver transplant patients. Rather than taking immune suppressive medications there is research to see if injecting the transplanted liver with some of the recipients own cells...I dont remember the details but it sounds amazing 😊💖! Great interview... 😊💖

Hello 👋 Danny & The Kidney Boyz!

Thanks for sharing this...Just curious cause Im a med student, did you have Keisher Fleischer rings?

Wow...2 amazing transplant stories and their friendship that came out of it is so wonderful 💖😊. Wow...I didn't realize there was a Transplant Idol 🎵💕🎶 at the Transplant Games...Cool .... I will go check out the Kidney boys music...🎵💕.... So beautiful that their music inspired someone to donate 🥰💖 Lol....the soundchecks...the first time I sand through a mic I was so shocked at how loud I sounded and was constantly trying to back up from the mic...lol..

Wow...it is great that Jareb had such an early diagnosis. Great photography and congrats on his marriage 😊💕

Pleasure to do the podcast with you Danny. Thank you again

Wow.... I had no idea Rheumatoid Arthritis could show up so early in life and affect so much.... I look forward to watching the rest of this interview <3

Nice vblogg. I am undergoing different test now to roll out wilson disease. I am diagnose having variant dystonia.

How wonderful to see you both looking so well. My brother Jamie was diagnosed with Wilson's when he was 9, ( he,s now nearly 40) Jamie,s illness started with tremors, he had a brain scan which showed a mass on the front lobe, sadly it was a copper build up on Jamie, s lobe, the damage was done we were devastated, they could see the copper rings in Jamie's eye,s he was put on zinc sulphate, that helps the disperse of the copper. Jamie's liver and spleen are ok,( he's allowed 4 pints of beer a week ( dr,s ok with that amount) thank heavens Jamie loves his pints. We live in wales there's three people in Wales with willson,s , Jamie,s the only one that the copper has stuck to and damaged the brain, his speech can some times play up , worse when he gets tired, he has serious mental health problems due to the damage on his brain, but doing absolutely amazing, he,s so gentle and very loving, he,s able bodied, walking fine, a few of his joints have suffered with the build up of the copper on Jamie s brain. we are on alert with Jamie, s blood, has if he cuts his self ect, his blood doesn't clot properly . Jamie is in a house by the sea side with 24 hrs care, which has worked out brilliantly , Jamie,s loving life. Jamie has three sisters, i aly the eldest, one other brother and Jamie the youngest, none of us have Wilson's, or carrying the gene , we all feel so guilty that its Jamie, we are so close to jamie, even though sometimes he drive,s us to drink ha, we love him so much, you mentioned special, yep your right ,you all are, absolutely amazing. Jamie is our life .Jamie was 19 when he had his two children , both are fantastic with there dad and Jamie adores them, they have been tested for Wilson's, they haven't got Wilson's, but are carrying the gene. with Wilson,s being so rare it would only affect their children if their partners were carrying the gene. You mentioned covid, thank heavens Jamie has been kept safe, he,s had his first jab ,second due end of April, we were ever so worried about Jamie having the jab has it wasn't known if it would have a reaction with his Wilson's, but it was fine. Thank you so so much for sharing your journey, love to you all x linda you look amazing. Keep well and safe XXX

Wonderful interview. Way to go Linda for keeping up with your daily exercises along with your husband <3 :) I also exercise daily and it helps so much in so many ways <3 ! I am a Canadian who was born with Wilson's Disease and needed a liver transplant at 48 years of age. I am now 50 and I am one Canadian who could probably talk your ear off if you let me...lol :). What an amazing and positive lady you are and you are looking healthy and beautiful. Thank you again for sharing all these incredible individual's Stories Danny:) Looking forward to hearing about your Transplant Olympics Adventures. Keep up the training :)

Really thanks it was inspiration for sure

I diagnosed at the age of 4 or 5 and i had a really normal life but now it’s a couple of years that i feel fatigue and having focus problem. I use DPenicilamin 3 per day till now. Even now i have those complaints but stil my doctor said everything is okay and i just use 3 per day.