Liver Transplant Support and Representation in day to day life. Can you help?

[MayMaj]

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 🙏😄

[Hidden]

Hi MayMaj. Beautiful post❤

[MayMaj in reply to Hidden]

Thank you ❤️

[TT-2018]

Hello May,

I also find the anniversary a huge struggle with the conflicting emotions, it’s so difficult to reconcile the feelings of joy and gratitude for receiving the gift of life combined with the circumstances involved.

You know that for the family of your donor, it must be an incredibly painful day. Not only have they the memories of their loved one but they also remember the circumstances around the day.

I was in hospital recently (non liver related) and spoke with a nurse about my transplant and writing a letter to the donor family. She had recently lost a young friend and remains in touch with her mother. The mother said that she took great comfort, reading the letters from the grateful recipients and it helped her knowing that the loss of her daughter gave others the opportunity to have a future.

I feel that it is something that only those who have experienced these feelings, truly understand. I wish you all the best with your anniversary and the importance of remembering.

Best wishes,

Mark.

[MayMaj in reply to TT-2018]

Hello Mark,

Lovely to hear from you and whilst naturally I don’t wish for others to have a huge struggle with conflicting emotions, I’m really grateful to hear I’m not alone in this.

I was wondering are there certain people, places, groups or things that support and sustain you in your struggles?

The things that you have mentioned really resonate with me.

Thank you for the anniversary wishes and remembrance.

Do you know if there are many other people on this forum who are liver transplant recipients?

Many thanks for your message 🙏