I have watched this amazing group for many years and I have contributed from time to time , but usually to agree with the brilliant advice and suggestions that have already been posted.
My partner of 30 years, Mr B (that's what our friends call him because we are both Andy), was diagnosed with NAFLD 14 years ago and we coped very well and life was pretty normal. Then about 8 years ago he was admitted to hospital with a big variceal bleed and was in High Dependency Care for about 10 days. That was the most frightening time of my life.
Since then we have experience a number of cycles of decompensating and recompensating, and on average a week or ten days in hospital each year. Various reasons, anaemia, malnutrition (because of diabetes & keeping blood sugar too strictly under control), electrolytes needing to be sorted because of the diuretics, etc.
He had a transplant assessment in 2021 at the Royal Free and that looked OK until they did some extra tests and the kidneys were too vulnerable. A transplant followed by twice weekly dialysis was not an outcome they wanted to see, and we definitely agreed.
To cut a long story short he went downhill very quickly after Christmas and was admitted to the Bristol Liver Unit and referred on to our local hospice. He passed away a few weeks ago, in such a calm, kind place and I was there holding his hand.
From the perspective of a couple supporting each other here are some lessons we have learned.
People here ask can you go from decompensated back to compensated? Yes you can! Several times. But get your vaccines; covid, flu, shingles, etc. Viruses spread in the community can cause quite a setback (not medical advice, just an observation, as is everything below). Take regular gentle exercise. Take care of your diet. Spend time with people you love.
Always go to medical appointments together - two head really are better than one. To understand what's being said and ask relevant questions together.
Make friends with the team that are caring for you. When we understood the 'direction of travel' Mr B's consultant, who we both knew so well, took me into a side-room to shed a few tears together, and so many of the nurses came to see him off when he transferred to the hospice because they had a very fond relationship with funny, cheeky Mr B.
Follow the advice from the dietician and if they prescribe a supplement that you don't like tell them! There are lots of alternatives - sweet, savoury, shots or soups, etc, etc. Getting the carbs and protein right is so important - especially overnight.
If you are also diabetic don't obsess too much about blood sugar readings. Discuss this with your GP practice, but our experience was that because the liver is struggling to store and release energy it is OK to run "a bit hot".
Get (ask for) a walking stick or stroller - falls are the worst thing! They sap self confidence and make you both feel very vulnerable. After Mr B's first fall in the garden it took us 30-40 minutes to get him back on his feet and we were both distraught and exhausted. Don't expose yourself to that.
Find a good independent pharmacy that can respond to a sudden changes in dose or medication quickly. Often happens on hospital discharge.
And finally...
When you know the inevitable is coming don't hold back from sharing your thoughts and fears.
We planned the funeral together, along with Mr B's brother. The music and images were so right and I was able to stand up to share some of our memories. It was something for him to be very proud of.
No need to respond - just telling the story and sharing experiences
Andy, Bristol, UK
Written by
Mufan99
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We're sad to read this, and very sorry for your loss. Thank you for taking the time to share your experiences for the benefit of other forum members at what must be a very difficult time.
So sorry for your loss but so very pleased you were able to prepare and give him his best passing possible. Thank you for sharing your guidance for this stage of liver disease.
thank you for sharing your life and love story and how you supported each other . My thoughts are with you and your family and hoping your happy and sad memories of your life together bring you lots of comfort . Xx
I'm new to this forum and have just read your post. What a kind and caring person you are, and I'm so, so sorry for your loss. I know those words sound corny but I really mean them. Thank you so much for sharing, and God Bless You.
So sorry for your loss, sending love and hugs. Thank you for your taking the time to share all this, it is really supportive for us all at such a difficult time for you. 😘😘
I'm so sorry to read of your lose, but how kind and thoughtful of you to share all you good ( and bad) experiences with us. Helpful advice some on the forum will take and hopefully use.
I am sad that your Mr.B died but in such a way that everyone could wish for and having you for a partner made that possible. You have given us such sensible advice that we can all use regardless of diagnosis, I wish you peace of mind and happiness in the future.
Such heartfelt words. Such excellent guidance. I lost my husband fto cancer 11 years ago and telling them you love them every day is so precious as they were and are so precious. I have NAFLD compensated and will take on board your observations. I'm so sorry fir your loss. Sending a cwtch (hug).
So sorry for your loss. Thank you so much for sharing your experience, strength and bravery. May he rest peacefully. Wishing you healing and the very best for your future.
I am so sorry for your loss but thank you for your advice and your positivity. That has helped a lot with what is important especially re diabetes. I hope that you can come to terms with your grief through the wonderful memories you have made together.
Mr B sounds like an awesome man and 30 years together is a tribute to both of you and the trials you both experienced. I hope you are keeping well. I never am 10 months since diagnosis and seem to have to avoided the severe complications. I have issues with recovery from septic shock but your post today has strengthened my gratitude for where I am and how lucky I am today and thank you for sharing your loss and encouragement to others at this difficult time. You don't need anyone to tell you but Mr B will be proud of you. Take care
so very very sorry for the loss of your wonderful cheeky Mr B. Your post is both amazing and inspiring - it will help so many people on here. All I can do is wish you the very best on your onward journey. It’s obvious you have touched very many people on here. x
So sorry to hear about Mr B, that is great advice you have given, the part about carbs at night and liver storing and releasing energy really relates to me as I have GSD1A. You took care of each other right till the end. Thank you for the valuable information. Take care of yourself and sending you hugs 🤗
So sorry for your loss. What a lucky man Andy was to have you by his side. Thank you for your sound advice to others at such a difficult time. I hope you will soon be able to think about him and smile without the tears.
Andy sending you much love xx a road we have both travelled, to be there for your loved one through all the heartache this disease inflicts. How very lucky Andy was to have had you in his life and to make sure he was not alone in this ❤ and an honour for you to have shared, much love to you both xx
I am so very, very sorry to hear your sad news. Mr B sounds like he was a wonderful person, as are you. Thank you so much for sharing your story for the benefit of others during this very difficult time. You are a very kind, caring person and have done a remarkable job in supporting your partner through all of this. Take care of yourself and I wish you all the very best for the future. Cherish your memories.
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