My darling husband of almost 49 years passed away at the end of October last. He was diagnosed with cirrhosis of the liver in January, but this was following a discovery that he had a very rare heart condition... constrictive pericarditis ...which we now realise had been developing for some years, although symptoms only showed up during the last 2-3 years. It was only when the consultant at Papworth ordered other tests to decide whether it was safe to operate, and they were reluctant to operate, that the liver problems were realised.
I joined this website to help us understand what was going on in his body. We did not know anyone else with this condition, neither had any of our friends or their friends heard of the debilitating symptoms that cirrhosis brings. With two essential organs in the body going down, life quickly became exhausting for him and the medical professionals seemed reluctant to give advice as to how to cope. I realised that for cancer patients The McMillan Centres have a whole range of advice and guidance experts on hand to support patients with whatever was troubling them, they have become very very expert at raising money at every turn and it is ploughed back into research and patient support, but was surprised to find this was not the case for Liver patients.
My husband was a popular man, with a fantastic sense of humour, had been in business for 40 years and I have been comforted by so many cards and telephone calls. His funeral in our local church was attended by over 200 people, but even so I was humbled to learn that £950. 26p was raised at his service, which I have topped up to £1000 and shared equally between the British Liver Trust and the British Heart Foundation. He would have been blown away that his passing would have raised such an amount for these two very worthy causes.
We have had a brilliant life together, with no significant setbacks, but I miss him every day and will continue to do so for the rest of my life.
For all of you, still suffering I wish you well, for those with mild symptoms read the posts and learn from those not so fortunate., and I wish that those of you who have been lucky enough to have transplants, continue to go from strength to strength.
JX
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Jackinthebox
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You are in my thoughts and prayers. What an amazing amount of money collected at your husband's funeral, I'm sure he would have been thrilled about it. Please take care Lynne
I am so very sad to read your post 😢 but I hope your memories of your wonderful lives together help you through your sadness. You must be very proud of him to know that so much money, for 2 charities, was raised in his memory. That alone shows how very highly he was regarded. Take care and take time to grieve, my thoughts are with you 🤗😘
I am so sorry to hear of your loss. You are quite right to remember the good times. By the sound of things they outweighed the bad. 49 years as a very good innings, like my parents. I wish you well in the future and thank you for thinking about the Liver Trust in your collection.
Your post has made me cry I'm so sorry your husband never made it. I have cirrhosis and I am doing everything in my power to live my life and make my liver healthy. You are right about the amount of help and stigma being attached to it. I wish you all the best for the future and thankyou for donating to help save someones life.xx
I wish you well in your fight to improve your health. I’m sure that like a lot of people you wonder where you went wrong with your life. We certainly did. Questioning obviously did he drink too much??...liked a glass of wine and a beer but was not dependant on it, favourite food, roast beef and steak, but not daily. a generation brought up on home cooking and my husband cooked for us both and continued that practice. did he exercise enough? Perhaps not, but there are lots of people older than us who are enjoying life without running 5 miles a day? Where did his rare heart condition come from?? Nothing in the family. he had enjoyed fairly good health until past retirement. Odd liver related flags came up in blood tests, but his Dr said...sort out the heart and the liver will be OK. A number of our generation were having a variety of heart procedures, they can do anything with hearts these days can’t they??? Well obviously not everything and he was in the minority and the failing heart put more and more pressure on the liver. It is quite clear that the liver can get in a severe state before it is discovered and with the general concept that it can repair itself then I can see how advice is often ignored. Like most things it too has a point of no return and I am horrified how many young people are suffering, and not all self inflicted by a long long way. Look after yourself and enjoy every day. JX
Jackinthebox
Thank you for your post. We send our sincere condolences for the passing of your husband.
Your thoughtful donation will help in our vital work to raise awareness of liver disease and support the very many who have it.
Thank you for a lovely and heart warming post. It does seem as if there are few options for guidance or coping skills for those with liver disease other than what can be found on forums like this one. And thank heaven for this one.
It is so good to hear that you will have great memories or your lives together,
I'm so sorry for your loss jackinthebox. What a lovely post, I am glad you had so many great years and that you have lovely memories, nobody and nothing, not even death, can take that from you. Wishing you comfort and happiness, Stacie. Xxxx
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Very very worried, GGT and alp very high 
End of Life Memories
Very Worried
Very High Liver Enzymes 
Very worried
