so our story begins in April when my husband started to feel unwell, slowing down and putting belly weight on...beginning of May we ended up at A and E...this resulted in a drain of 12.5 litres of ascites fluid and the news that his cirrhosis was now decompensated...several hospital visits later, 3 more drains and a weight loss of nearly 6 stone to dateand banded huge varices....we are going to Addenbrookes next week for the final assessment day, with the major decision being given on Friday, so hoping we get the news we desperately need ....as all of you know who have had the same journey ...it is an emotional rollercoaster...seeing the person you love most in the world struggling with all aspects of life...the debilatating tiredness...the mood swings from H.E....muscle wastage...his feelings of being useless...its a heartbreaking situation. Although a transplant is the last resort.. it also represents a light at the end of a dark dark tunnel....another chapter in life...another unknown ...but better that than the alternative. We will see what Fridays decision is.... another drain no doubt as the tummy is huge again....I will keep you all updated as we go....and to all the people out there ...the people who suffer from this ghastly disease....the people who love those sufferers...be that wife/husband...son/daughter.....family member or friend....keep fighting....life and good health is precious....wishing everyone love and best wishes on which ever journey you are facing ....its hard ...i know ...but keep smiling ...even through the tears....god bless..TK xx
journey to transplant: so our story... - British Liver Trust
British Liver Trust
Hi Tk64, what a true touching explanation of this horrible illness 🙁 my prayers and good wishes with you, hope everything goes well, 🤗 Kalsoom
Sorry you are going through all of this. God Bless your family and I hope your husband has a full recovery soon.🙏🙏🙏
I really feel for you. I hope you get the right decision on Friday. Thinking of you both. Love and hugs Lynne xxxx
Hi Tk. I hope that everything goes well for your hubby at the final assessment and that he gets onto the transplant list. All the very best to you both. Alf.
Hiya. I wish you and your husband the best and hope you get the decision you need. That wait for the yay or nay is tough, but will be here before you know it.
Thank you for your lovely words. 🤞🤞
Oh my - that wait for that magic yes is an ordeal indeed. As others say all of my 🤞🤞are crossed and hope you get the decision that you long for.
Good luck 👍
Oh TK, what a moving and emotional post. My thoughts and prayers are with you both for a positive outcome on Friday.
Good luck on Friday, Addenbrookes are wonderful, had my transplant there may 2017
Fingers crossed you will get a positive decision. It’s a horrible disease to live with xx
Good luck for the final stage. You probably don’t realise just how close you are to the next stage - an enormous life improvement hopefully!! Stay positive, you’re nearly there, and if all goes well all those horrible symptoms that affect you both so much will be behind you and you will smile about them in the future. Take care, both of you. Andy.
Good morning Tk64,
I am sure you will get lots of support from our lovely forum members but if you would like to chat things through the British Liver Trust Helpline is available Mon- Fri 10 am - 14.45 on 0800 652 7330.
Not sure if I replied before. Husband just had transplant addensbrooke 7 weeks ago. Previously had bleed and drain and had banding. They will know if a transplant is needed. Best thing husband did and he’s doing well and like a new man. Where abouts are happy to call if you have any questions. To give support from a patient and partner xx
I've messaged you privately
Thank you for your moving and insightful post TK. I hear you say that whatever happens on Friday, or what happens ever for that matter, love is the only answer to all the questions. It's good to be reminded, because like you say, it's a hard road. Best wishes all the way xx
Beautifully written with such heartfelt meaning that sheds light on how debilitating liver disease is - I pray you will hear some good new's of a transplant soon if that is what is needed. God bless you and try and keep strong there is light at the end of the tunnel I'm sure. 😘🔦
Tk64, you and your husband has been through so much and yet you still think to post such a heartfelt and thoughtful post to help other people, you have a big heart. I wish you both all the best for your appointment on Friday 🌻
Wishing you the best of luck
I was like you, it is a long journey from the start of the illness through to assessment & if lucky enough receiving that special gift.
Sometimes I am still in disbelief the US had his transplant last May, it somehow seems surreal.
Oh my poor love, yes it may feel that a transplant may be nearly the end of the world. It isn’t. There are risks and at times the journey can be hard but it is so worth it. I had mine 27 months ago and I am doing pretty damned well. Well enough to work with my hubby 2 days a week plus volunteering for two. I sleep a lot and get tired but I’m ok. Far better than your hubby now.
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