It is with the greatest sadness I write this update……
My very brave wonderful kind gentle soulmate very sadly lost his life to this awful Liver Disease yesterday morning.
My hero battled tirelessly for 13 months, this past 2 weeks have been hell, he slipped into a severe Hepatic Encephalopathy Unconscious episode that the toxins have just raged through him and stole him away from me. All our hopes, plans and dreams are gone and after 33 years of being together almost 24/7 I am so lost 💔
The Consultant my husband had to care for him this past week has been out of this world, he fought tirelessly to give my husband every minute chance, one thing I am so grateful for.
Although the treatment for H.E. is Lactulose, Enemas, suppositories and Rifaximin combinations to try to eliminate the ammonia toxins, there is also a drug called L.O.L.A (L-Ornithine, L-Aspartate) that my husband was trying and it was working and reducing the ammonia level, for my husband though, sadly, it was too little too late.
I hope by me mentioning this treatment, it may just pull one of you out of a H.E. Episode god forbid you develop this horrific complication.
My wonderful husband clung on and got through his 60th birthday Friday, I read all his cards to him, ive been allowed to stay with my husband 24/7 right till the very end
I am beyond devestated 💔
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WildHorses101
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Saddened to hear your update, thoughts with you at this terrible time. I guess the positive is that he is no longer in pain and suffering and hopefully in time you can come to rebuild your own life and be happy again.
Katie xx
My hubbies consultant in Edinburgh suggested LO-LA as the next thing we should try for hubbies issues which do seem to be increasing on the HE side of things. She can't prescribe them as we are in a different Health Authority and we are struggling to get them at the moment as GP can't/won't prescribe and hubbies local consultant has retired with no one looking after his 'historical cases' so trying to get someone local to finally make a descision on the L-Ornithine, L-Aspartate.
I really do hope you can get LOLA, it was reducing the Ammonia levels, it was just given to him as an option too late, my husband had already gone into an unconscious state and they were administering via N.G tube.
I really wish your husband well in his fight with this awful awful disease
Hi Katie, I don’t know if they have Healthwatch in Scotland but it might be worth flagging the issues you’re having with them. They might be able to help make sure your husband is under another consultant and the medication is available. healthwatch.co.uk/what-we-d.... I know you’re very proactive in advocating for your husband so I’m sure you’ll get it sorted. The hospital PALS team might also be able to help. Good luck
Thanks for that - Never heard of Healthwatch in Scotland. Retired consultant is now looking into the Lo-la thing and is maybe referring hubby to next nearest hospital who also have an outreach clinic from Edinburgh (he's currently doing a half day a month clinics still). His new secretary has informed me that no one is currently managing the retired consultants 'historic patients' only new ones which isn't right at all. Thankfully hubby has the safety net of still being under Edinburgh too but loads of other general gastro patients and other liver patients locally arn't.
I think they’re getting lots of new patients because of Covid. It’s the same with Diabetes. There just isn’t the capacity within the system so I worry that routine care of existing patients will get lost as they firefight to deal with patients in crisis. I’ve had two clinic appointments cancelled. The consultants secretary has said it will be at least 6 weeks before they organise an additional clinic. And my consultant isn’t retiring. Fingers crossed and be prepared to be one of the people shouting loudest. I’m glad your husband has the support of Edinburgh. I’m thinking of asking to transfer to Addenbrookes but I’m not sure they’ll have any more capacity. Interesting times…
So sorry to read your very sad news. You must be heartbroken after so many years together. You will have so many happy memories to sustain you as you come to terms with this terrible loss. I’m three years down the road and although you don’t forget and live with the grief, it does get easier over time. Thinking of you at this difficult time. Please take good care of yourself x
I'm so sorry to read this. You have been through such a lot. Try to go easy on yourself, your husband was a very lucky man to have you by his side through it all. x
I am so sorry for your loss, I am so glad you got to be with him and that he was so well looked after by you and the hospital. It's so very kind of you even at your darkest hour to come here and think of others. Am sure your advice will help someone. Take care and I hope you have lots of people around you looking after you at this time xx
I am so sorry to read such a heartbreaking post, life is beyond cruel sometimes 😢 my love and thoughts are with you at this very sad time, in time I hope you will get some comfort in knowing he is no longer suffering and I know that the beautiful memories in your heart although painful right now, will also be a comfort in time, please look after yourself and take care during this very difficult time, and please stay on this site and reach out as often as you need to, everyone will be here to help you when ever you need them my lovelyxx
So very sorry for your loss. Look after yourself as best you can through this tough path of grief. I take lactalose but will ask about LOLA. Thank you so much for sharing. May you find peace and comfort
my thoughts are with you and sending love and a big virtual hug . It must be heartbreaking for you to lose your loving husband . I hope happy memories of your 33 years together bring some comfort to you . Xx
I am so sorry for your lost I hope you find happiness in the following days and weeks to come he is now at peace he will always be with you just say his name and he will be there in your heart. RIP
I’m so sorry.I know nothing will make you feel better right now but sending a big hug and hoping you have people around you to love and support you at this horrible time x
I dont know what to say, hold close those that are dear to you and take life one day at a time. You must be exhausted. Sending you the hugest of hugs. So pleased to hear that he was well cared for at the end after all the care and love you gave him. Xxx 💗
I am so sorry for your loss. I lost my husband last year and know how devastated you will be feeling. He is at peace and he will live on through your memories. Sending hugs
There are no words! This is an awful disease. Which, at the end, causes so much suffering. For so many. Know that your loved one will always be with you. And I am sure, he is so grateful that you were there with him, in health and in sickness. I’m keeping you in my prayers.
So sorry for your loss.. sounds like you both put up a fight.. keep strong. Cry shout scream then live your life to the full the way your sole mate would want you to live. Thinking of you.
my condolences. I am so sorry to read this. You were amazing with the support you gave him and other fellow carers and people who were suffering from this devastating illness. My thought and prayers are with you and this awful time. I’m here if you need anything xxx
Very sad for your loss. My heart goes out to you. You are so kind to share what you learned about Lola. It may be in my partner's future. Your screen name reminds me of that love song; perhaps it is special for you, too. I hope it and your other memories bring you comfort, and I wish you strength and peace.
Please do ask about LOLA, (L-Ornithine L-Aspartate) and if the team who take care of your partner does not know about it, ask them to investigate it!
LOLA is amino acids and it absorbs ammonia, and passes it through the Urea cycle. Please research it, print it out and take it to your consultants. It was beginning to make a difference and bringing down the extremely high ammonia level for my husband.
My husband was also being treated with Lactulose 4 times per day, Rifaximin 550mg twice per day, 2 enemas per day during his last 2 weeks of life.
If this treatment regime helps people, my husbands suffering and devastating loss has not been in vain xx
So sorry for your loss it's so devastating I lost my husband exactly the same way on 1st April this year sending love and strength to you and your family x
No one truly understands what youre going through with a loved ones loss to this horrific disease do they unless walking in your shoes. It steals your loved ones away from you, shatters hopes and dreams doesn't it, its such a cruel disease. What ive witnessed, I never want to see again ever! Ive been left with so much to process im broken and lost my soulmate of 33 years, i dont know where to begin. How do you cope? xx
I'm not sure that I do cope very well to be honest. Some days I'm so cross with him for not fighting harder and being strong enough to stop drinking, other days I feel let down that there was not enough support for us both. However, I take comfort in my faith, and I know he isn't suffering anymore. He hated the deterioration in his physical health and now he's at peace. Be kind with yourself, there's no right way to do this. X
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