Chronic Liver Disease Post Transplant

[Dawnejoy]

Hi, I had a liver transplant in October 2017 and apart from a little set back right at the beginning, meaning I was in Addenbrookes for 5 weeks, I have been really well. I haven’t even had Covid!

However a couple of months ago, I had a CT scan which showed that I have chronic liver disease. To say I was freaked out is an understatement. I also often have what I can only describe as mild pancreatic pain. I’m having an endoscopy under anaesthetic on 7 May and hopefully after that I’ll have some answers. What I’d like to ask is has anyone else had anything like this?

My transplant was required as I have a faulty gene, A1ATD - just for info.

[AyrshireK]

Unfortunately liver transplant doesn't cure you of A1ATD nor would it clear those with other genetic, auto immune or viral conditions. All it does is swap out your faulty liver for a new one which can also end up becoming damaged by your original underlying condition. It's also possible for other issues to affect your transplanted liver - fatty liver for instance.

It's just so sad that you are back on the roller coaster of advanced liver disease all over again. I guess the question of re-transplant may crop up if you start to suffer major symptoms again.

Wishing you all the very best, Katie

[Dawnejoy in reply to AyrshireK]

Thank you for your reply. I guessed that the A1ATD, may rear it’s ugly head again, but I was 55 at the time of transplant and thought I’d be ‘safe’ for another 55 years, so to get a diagnosis again of chronic liver disease was a complete surprise tbh. Will just wait and see what the result of my endoscopy and biopsy are and then see where I go from there. I’ve been so very well and so far this new issue is not showing up in my bloods. Maybe a few lifestyle changes may help, but I suppose you can’t outsmart your genetic make up 😊

[Yellowsydney]

Hi, yes any disease can reappear in your liver with some people requiring a further transplant. I had my transplant may 2017 at Addenbrookes for NASH, had a biopsy in 2022 whilst having a hernia repair and the results showed mildly fatty liver. The team at Addenbrookes are the best they will look after you.If you use Facebook please feel free to join our friendly and knowledgeable Facebook page called*liver transplant support uk ' thousands of people that have been in your situation.

Hilary xxx

[Dawnejoy in reply to Yellowsydney]

Hi Hilary, thank you for your reply. Originally I was diagnosed with NASH by my local hospital and A1ATD was not diagnosed until I went to Addenbrookes for my assessment for transplant. Wish I was still under Addenbrookes tbh, but was moved to Nottingham as it almost 2 hours closer to home. I know nothing about Nottingham, but I’m sure I will do soon. 😂

I just wanted to know that I wasn’t alone in a return of the original disease. When I spoke to Dr James about it, I asked if there would be a need for a second transplant and he thought it unlikely, but not impossible. All I can do is go with the flow and try not to get too hung up about it. At least this time, I know what to,expect! 😂

[PeterP54]

Hi Dawn. My TX was in 2007 but for PSC. I too have had some set backs: Post TX Lymphoma (PTLD) which I thought would be my lot, but 8 months of Chemo cured the Lymphoma, but not before making a mess of my waterworks and now have a stent in my ureta which is replaced every six months. Two years ago during one replacement cancer was found in my bladder and cut out. So although my reason for TX was not the same as yours, it is possible to recover from setbacks. Those doctors are miracle workers. Like you, I don't get cold, flu and never have had covid although I have been around people who were a day or so before diagnosis. I have had all the covid jabs going and on Wedesday had my latest. Unfortunately it was Moderna, and I have been under the weather since then. I hope you get some positive news real soon.

[Dawnejoy in reply to PeterP54]

Hi Peter, thank you for your reply and I’m so,sorry to hear that you’ve been through the mill since your transplant. I suppose when we have transplanted organs we believe that issues are resolved, but obviously that’s not always the case. But, and it’s a big but, we are still alive and so far I’ve had 6.5 extra years, seen my grandson born and spent more time with my granddaughter. Always an upside. I try to keep positive but that’s not always easy. All I can do is carry on as before and wait to see what the future holds for me. Although I’m under Nottingham now, all my previous medical issues relating to my liver were dealt with by Addenbrookes. Having said that, Nottingham have been very quick to get me in to see what’s going on. We are all in the hands of our medical teams aren’t we? I have absolutely no complaints about any aspect of my care and still believe myself to be extremely lucky .

Hope you start to feel better soon after your latest Covid jab x

[PeterP54 in reply to Dawnejoy]

Hi Dawn. Thanks for your reply. It is important to stay positive. My doctors (Leeds and Salford) have all been great and it sounds like yours are too. I think I have been very fortunate so far. Transplant medicine has come so far since I was told that I would need one eventually. My memory at that time was that they were front page news and did not work. Now they can sub divide a liver and treat two people. I am pretty sure that with your condition if there was a risk of early failure you would have been told. Sounds like you were not warned so is maybe unlikely to be associated with your genetic history. Hopefully there is a good and easy answer. Take care and good luck. Peter