beeb a while

[1football]

hi I’ve been away from various chat groups for around 3 years ,was on here and found it a great help before during and after my transplant,am now over 5 years since my gift and here if anybody would like to chat.

Thanks. Huw

[AyrshireK]

Hi Huw, lovely to see you appearing again & Happy New Year. I do so hope all is going with with your transplanted liver and you are living life to the full.

I've never gone away and sadly hubby and I are facing a transplant assessment in January. He managed 8 decent years after coming off the list the last time but sadly we've seen a serious decline towards the back end of 2023 including a few days in hospital with acute HE.

Just awaiting dates for the assessment in Edinburgh but it should be this month sometime.

Would love to hear how life has been post op in order to give hubby some positivity as he's quite anxious about things at the moment.

All the best,

Katie xx

[1football in reply to AyrshireK]

Hi Katie thankyou for remembering me as of course I do you.

Sorry to hear your hubby has been poorly again after so many good years he must be pretty poorly to get back to assessment stage and hope he gets the treatment he needs am assuming a transplant is the best option.

I’ve been extremely lucky with mine and YES living life to the full,I’ve had a complete career change and now living my childhood dream of driving artics I absolutely love it ( I was a boat builder before)married my lovely Donna who like you lived every step of my illness and without whom I don’t think I’d be here I now appreciate how important it is to have someone beside you.

Am now down to hospital appt once a year with only 7 small tablets a day although I must loose weight🙄

A very happy new year to you both

Huw x

[AyrshireK in reply to 1football]

So PLEASED to hear that transplant has been all you wanted it to be. Really great to hear you are living life to the fullest.

Yes, hubbies doctor has said he's more poorly now than he ever was when he was listed the last time (2014/15) - his symptoms are largely HE related rather than anything else but it's now meant he's practically needing 24/7 care as he's either sleeping all the time or so tired he can't do much for himself. The week before Christmas was horrific with a very scary acute HE episode. He's started some newer meds for HE but I think we are headed for t/p listing ........... at least we hope so as the decline since May has been awful - we rode almost 400 miles on our e-mountain bikes in the Cairngorms in May over some really rough and techical routes. By September he's had episodes out on local rides where he hasn't even been able to figure out how to get on his bike and after several falls both on and off the bike hospital has told him he has to stop cycling. Sadly, with him requiring so much care I daren't leave him home alone for longer than an hours shopping trip so my cycling and my self - employment are having to be knocked on the head for the moment too.

Anyway, we can but hope he gets his chance and goes on to have the happy, bright future that you are experiencing. We know that so many folks don't get that or the route can be bumpy but we have got to hope he (like you) get that shot at rebirth.

Best wishes and hope you and your family have a brilliant 2024.

Katie x

[Millie09 in reply to AyrshireK]

Hi Katie, Wishing you and hubby and family all the VERY BEST for 2024 ..

Best wishes linda x

[AyrshireK in reply to Millie09]

You too Linda, hope 2024 brings better health all round.

Katie xx

[Millie09 in reply to AyrshireK]

Many thanks Katie 😊 xx

[Millie09]

Hi huw !! ..oh how lovely to hear from you ,I remember you .. Happy New year to you and the familyGreat to see your doing soooo well post transplant and enjoying your dream job to boot ! ..and congratulations on yours and Donna's wedding .

I'm still here on forum, made some lovely friends along the way .. I'm still plodding along ,no transplant of which I'm.now 16 yrs in June since my diagnosis of end stage cirrhosis.

I count myself extremely lucky indeed. Just go to QE every 6 months for the regular checks etc.. only thing I'm struggling with is fatigue along with insomnia? Something I just don't understand lol . But it is what it is .

Great to have you back on forum

Best wishes linda

[Hope-feb3-2017]

Hi Huw,

HAPPY NEW YEAR!!!! 🎉

So nice to hear from you and that you are doing soooo amazing new adventures!!!

Same with me …. I have been away for awhile .. things changed… Happy that EVERYONE FROM BACK THEN ARE HERE!!

Im going to be 7 yrs post on Feb 3 2024!!!

Its amazing how time passes

I’m involved with my doctors and in studies, grants and helping in any way I can. It gives me a great purpose and plus I love it. If someone wants to listen …. I will talk.

Soooo much has changed in the treatment post that I have found (here in Canada) I’m now on a time released medication which is great

Hey!!! Nothing is perfect but I’m very very happy to be participating in this life … with my daughter and my living husband that has been by my side every Sat of the way!!

I as well am here to help in any way by being here

Take care everyone…. Susie ❤️❤️❤️