Hello Liver People, I’m new here. Can you help me? I am looking for a supportive liver transplant community, as I approach another life giving anniversary. Giving thanks to my donor daily and all who contributed to saving my life, I am hugely grateful.
As my anniversary (liversary) approaches, I yet again find myself struggling a lot around this time of year. It’s a time to delight and celebrate, yet I notice I am very sensitive and tearful and many many other things.
In some ways I feel I struggle as transplantation is not an everyday topic and it’s something I also feel I wish related more easily in the world.
There appears to be a lack of representation, knowledge and understanding out in the wider community regarding transplantation (unless I missing something) and with it being such a huge life event that defines a lot of how my life is today. I feel alone and lost at times.
I wonder if anyone has any unique words of support that would enable me to feel more a member of society in a world where liver transplantation is still so rare?
Do other liver transplant recipients feel anything similar at times?
Many thanks for reading this, it would be lovely to get some responses if you feel you are able, as it would be great to feel I have some voices and viewpoints, other than my own, that get it.
Please be kind 🙏😄
Written by
MayMaj
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Hi there, 4 years post liver transplant here. If you are on Facebook there are several liver transplant support groups some are UK based some are worldwide, all very friendly. I've found them a great comfort.I've just had my 4th liverversary and like you celebrate the fact that I've survived another year but also aware that another family are mourning the loss of their loved one, but I know that she would have died wether I needed a liver or not. I have written to my donors family and had a reply which said they were glad that something good had come out of their mother's life, I take comfort from this.
British Liver Trust have a page listing the many support groups in the UK on the website. Most are currently 'virtual' but hopefully when covid is in the past they'll start being in person once again. britishlivertrust.org.uk/in...
Most (if not all) of the UK transplant hospitals have their own Pre & Post Transplant support groups too.
Hope you find somewhere, there are loads and loads of post t/p folks on this forum too who are happy to share stories and it helps those who are perhaps waiting for t/p or not yet at that stage to hear too.
This sadly is a subject that isn’t always recognised and talked about. A person’s liver journey can be for the best part a private and personal experience. While others may rely upon the help and support from partners, families and friends.
That person whose partner is suffering from HE issues may have to put up with a lot of abuse and outbursts of frustration. It certainly often tests a persons love and commitment towards the relationship. For these carers, there is no support or understanding within local communities. Some marriages don’t survive and couples separate, basically because of a lack of understanding of the condition, and not being able to share with others.
A liver transplant is a very personal experience. Because we are all different, we all have different emotional strengths and weaknesses. For many people, they just want to get back to normality and get back to work and on with their lives as soon as possible. But, for others, the emotional turmoil may last for ages. A person's mental health may suffer as they try to come to terms with the enormity of their situation and experience.
I suffered for ten months with horrendous survivors guilt. Some even suffer from post-traumatic stress disorder. Sadly there is often little or no support within local communities once a person walks out of those hospital ward doors, they are very much on their own. GP’s tend to back away when dealing with liver transplant patients as they can feel a little out of their depth. My particular MIND mental health charity has a seven-month referral waiting list, so that isn’t an option. Being put in touch with a fellow transplantee would be of great help as there is a sense of empathy and understanding. But, local hospitals can’t pass on other peoples details, so this is a non-starter.
When the time comes for you to leave that hospital ward for the first time in nine days (or even longer) You’ll be all battered and bruised. You’ll be sore and have around 50 metal clips holding your body together. You may be struggling with the mental enormity of your situation and be thinking of your donor and their families. You’ll most likely have all these feelings and emotions going on. But you're alive.
Just as your about to walk through those ward doors for the last time, the senior nurse calls out, “Oh, by the way, and don’t forget. You won’t be able to return to work for at least six months”. You now have yet another set of worries the think about. “How will I pay my rent or mortgage?”. “How will I be able to buy food?”. “How do I go about claiming benefits?”. “How can I do any of this as I’ll be convalescing at home and will be quarantined for the next few weeks?”
Back in 2019, I looked at setting up a project to address all this. I had a few meetings with the CIO of a local mental health support group. He understood that there was a need to address this. I then set about setting up the “Liver Life Café”. (this is a play on words, “Live a Life”, and “Liver Life”) This was to be a meeting place where people could come and meet up and share their experiences and talk with others. It was also a chance for those carers to talk about their partners HE issues and liver related medical issues, and for family members to learn more and obtain a greater understanding, there would be advice on how to go about getting the local support they needed. All over a cup of coffee.
Everything was going well, to begin with. Like any venture it needs funding. I was looking into setting this venture up as a Community Interest Company. This would allow me to apply for lottery funding and business start-up grants. I also had the support of an eminent Hepatologist in London, who was getting me some grants to set all this up, so funding wasn’t an issue.
Sadly Covid-19 then struck, and everything died. Doors began to close and the project was dropped, but I still have the “Liver Life Café” website up, but this will be closing later this year: liverlifecafe.co.uk/
So, why not test the waters and see about setting up your own support group within your community. Try and speak to your local Liver specialist nurse up at your local hospital. Although they are always very busy, they're never too busy to further and support anything that helps others.
Hi I had a liver transplant nearly 6 years ago n to be honest you go through so many different states of mind as you start to recover the guilt of being alive The guilt of why me ? Your definitely not alone there are others in the same place its a difficult one n yeah there should be more support groups for all of the transplant recipients, my advice to you is try n live your life the best you can n try n go forward abit at a time n yeah there will be set backs but as the saying goes dust yourself down n go again I wish you all the luck in the world n your not on your own there are people/ groups out there for you , take care n all the best with life , one love
Hi May and welcome,
Katie has already mentioned our support groups on this thread.
Our virtual support groups really have been so successful throughout Covid and you would be very welcome to join.
Here is a direct link to the form to express an interest:
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