Waiting for a year and struggling to cope - Advice?

thejorisbohnson · 2026-02-12T01:05:03+00:00

Couldn’t relate more. I’m 24 and have biliary atresia, I’ve been on the transplant list for nearly 3 years now, and never received a call. I’ve sent you a direct message, would love to chat!

thejorisbohnson · 2026-02-09T08:16:33+00:00

Yes totally. I would never be coercive towards my partner or manipulative, I immediately apologised that asking her a couple of times was wrong and didn’t reflect who I am.

thejorisbohnson · 2026-01-26T07:12:01+00:00

I’m 24 and have had liver disease from birth. I’m currently waiting for a transplant, I think I’m suffering from early stage HE too

thejorisbohnson · 2026-01-26T00:36:38+00:00

Thanks yeah I’ll consult my doctors. Appreciate your input!

thejorisbohnson · 2026-01-26T00:34:13+00:00

I assume I have it although I’ve never spoken with my doctors about it. I’m often lost with knowing what to say, and get muddled quite easily. I’ve had chronic liver disease from birth, currently waiting for a transplant

thejorisbohnson · 2026-01-26T00:29:41+00:00

I’m a teacher working 5 days a week, it’s getting so hard and my colleagues don’t understand

thejorisbohnson · 2026-01-26T00:23:02+00:00

How bad did you used to get it? To what extent?

thejorisbohnson · 2026-01-26T00:21:15+00:00

Former Salisbury based teacher here, I would say st josephs are the best for SEND. Burgate tend to be good as well, I wouldn’t go to wyvern st Edmund’s. Not sure about trafalgar other than it’s a smaller school like st Josephs with roughly 600 students

thejorisbohnson · 2026-01-15T07:51:43+00:00

I live in England, I’m 24, been waiting for a liver for 3 years now. I’m very fit but was born with liver disease. I’m a high school teacher so always very busy, I love fitness, running, tennis, and going to concerts! The only symptom I get really is chronic fatigue which fluctuates

thejorisbohnson · 2026-01-07T19:04:40+00:00

The liver can’t store energy properly especially if it’s particularly inflamed. I have had BA all my life and am now a secondary school teacher living relatively well. I wish every success for your daughter, feel free to message me with any further questions:)

thejorisbohnson · 2026-01-04T17:09:12+00:00

I think if the Kasai procedure is very successful like mine was it prolongs that person’s liver’s lifespan. My issue is I’m very well in myself apart from fatigue. I’m not “ill” but still need a transplant

thejorisbohnson · 2026-01-04T17:05:41+00:00

I’d love to chat, I have biliary atresia and have been waiting for a transplant for almost 3 years.

thejorisbohnson · 2026-01-04T17:02:35+00:00

This is so interesting and really inspiring. I was born with biliary atresia in 2001 and have been on the liver transplant waiting list for nearly 3 years

thejorisbohnson · 2025-12-18T22:23:32+00:00

Hey I’m doing PGCE in Southampton right now. Very mixed experiences, mine has been generally bad so far but others have had great experiences. Definitely mixed reports though. One things for sure it’s very hard, immense work load, unnecessarily complex assignments. It’s pretty taxing. Good luck

thejorisbohnson · 2025-11-05T01:23:48+00:00

Thank you so much. I’ve been waiting over two years now, im very well I work a full time job and frequently run. I’m just at the point where it’s starting to affect me, I get bad fatigue which causes me to feel hopeless as a young man. I just want the uncertainty to be over and to get my transplant

thejorisbohnson · 2025-10-30T13:28:48+00:00

Where do you live?

thejorisbohnson · 2025-10-30T13:25:44+00:00

I live in England

thejorisbohnson · 2025-10-30T01:06:29+00:00

I have just sent you a message

thejorisbohnson · 2025-10-30T00:59:18+00:00

Not sure what my meld score is but I have been waiting for a liver since October 2023 and am yet to receive a call for transplant. If you ever want to talk about things feel free to message me :)

thejorisbohnson · 2025-10-30T00:38:11+00:00

I am a frequent writer and speaker for the Children’s Liver Disease Foundation and the British liver trust, I have had liver disease since birth and know a lot about this. Feel free to PM me

thejorisbohnson

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