New to the community

[welshgareth]

Hi all. I'm post liver transplant and have been writing for british liver trust website.

I've faced lots and lots of complications with big effects to my physical and mental health.

It's had a big impact on my life. I've been looking for help. I've even thought about palliative residential respite as I'm living day by day from bed to bathroom when not admitted. I'm worried about my outcomes and am unsure where to turn ?

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Good Morning WelshGareth,

I'm so sorry to read that your so poorly which is still ongoing. Unfortunately I'm not a TP patient so I cannot comment on what your going through, but there maybe some on here that have gone through a similar fight on this on this forum so please dont despair and hang on in there as were all here to support you back to a healthy life style.

Please take care Gareth and dont give in!

Love

Shropshire Star 🌟 who's wide awake at 4am ish

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Hi

I'm not post transplant but I know there will be someone on here to help you, I really feel for you. I will be thinking of you. Please take care Lynne

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Hello Gareth, I'm so sorry to hear your having so many problems post-transplant. Life can be so unfair at times. Those whose liver transplant was due to PSC or PBC may go on to experience health condition post-transplant due to some of the medication that is having to be taken.

I happen to have a friend on this website who had her liver transplant some eight years ago, and she still has issues and often struggles to lead a normal life. For her it's often hard to get out of bed in the mornings. This has had a major impact on her life.

In the case of PSC and PBC the need for a liver transplants is because the liver has become so badly damaged. The condition that cause the damage in the first place is still there, and has to be managed.

My friend and I also understand about the lack of available local support, which just isn't always available for people who have had a liver transplant. For many, the roller-coaster of emotions and the messing around of the body’s immune system both during and after the operation can cause some people to become mentally exhausted. Conditions like "Survivors Guilt", and "Post Traumatic Stress Disorder" (PTSD) can become a real issue. Sadly, once a person leaves those hospital ward doors, there's very little help and support out there in the community. A person can then feel alone, helpless and confused.

One of the projects I've been working on is to raise awareness of these post-transplant conditions, and to try and provide some form or help and support out there in the community. My friend and I have been working a local mental health support group called, "Changes - Wellbeing" and the "British Liver Trust" to set up a support group here in the West Midlands. We wanted this to be a friendly, approachable place, where patients, carers and family members could come and share their concerns and stories. The "Liver Life Cafe" is still in the planning stages, but we hope to get this up and running by early next year. We plan to make this Cafe available to all local communities, such as Punjabi Sikh

and other communities as liver disease affects everyone.

I have been working on a website for the "Liver Life Cafe", this is still very much under construction. But I have included a page that talks about this problem, "Depression (a fresh approach)" here I talk about the misconception that once you've had a liver transplant, your life will be fine: liverlifecafe.co.uk/depress...

Because this is a community-based project, I wanted the website to be able to reach out to other support groups within the area, so we can all share and support each other. The old adage, "It's not what you know, but who you know" is the pulling together of these other support groups within the community.

We hope this idea could hopefully inspire others to want to start up their own support group. Being able to talk with other fellow transplantees can be such a relief, as sometimes fellow family members just don't understand the journey we've been on.

I personally find that once I understand something, it's as if my brain can finally accept it and I can get closure. Understanding why a person can become depressed and feel alone and isolated post-transplant is a way of understand and resolving the issue.

I hope some of this is of help to you Gareth, and to others too.

Good Luck.

[Yellowsydney]

Hi Gareth, you are not alone before my transplant due to NASH I never felt ill, only symptom of liver disease i had was vomiting up massive amounts of blood! I spent the first 5 months in and out of hospital more in then out for many reasons. I'm now 27 months post and have little energy, problems sleeping, hot all the time, nausea, pain. I can't do half of what I used to, sometimes I think I'm just lazy and start doing something only to collapse from exhaustion. But I'm alive.

Hilary