THE END OF THE ROAD

[Peeps7]

My poor Peeps is deteriorating fast now. He is five and a half years post cirrhosis diagnosis, ESLD 4 and has had every symptom in the book. Mid February he had his septic gall bladder removed by open surgery, despite multitudes of varices, and made a remarkable recovery until five weeks down the line, then as warned, his liver ceased to fully function and went into confusion. He has been back in hospital recently with severe HE, has been pumped full of fluids/glucose and enemas in an effort to clear the dreaded toxins. I had a long chat with his hepatologist yesterday and he says he can no longer do anything more medically for him despite his ongoing PVT and varices everywhere, and has advised that I establish closer links with our hospice. Peeps sleeps so much more now and I tiptoe around him, checking to see if he is still breathing, I have the added dilemma of my son, his wife, 6 and 2 year old living with us whilst they have an extension built - whilst the distraction of the little ones seems to be therapeutic for him, I am concerned about the physical effect on him. Apologies for the angsty post, any thoughts/advice would be much appreciated, Anne ☹️

[AyrshireK]

So sorry that the end appears to be approaching. Take up the help of any of the agencies helping with palliative care. I don't know whether you've seen it but the BLT have only recently added a new page to their website and its called 'Thinking Ahead - planning for your future'. britishlivertrust.org.uk/li...

Having your family so close just now is probably the ideal, be there for each other.

Thoughts with you all.

Katie xx

[Peeps7 in reply to AyrshireK]

Thanks as ever Katie x have downloaded suggested leaflet which is going to very helpful, hope things are OK your end? Anne xx

[AyrshireK in reply to Peeps7]

Things our end arn't too bad at the moment thanks for asking especially with the situation your end. Hubby remains stable, we had a shock in December when they reported that several lesions had been found in hubbies right lobe and we had to wait over 12 weeks for a follow up supposedly 'urgent' MRI scan. Thankfully it was an all clear for HCC.

Thoughts with you.

Katie x

[Isabelle2]

Oh my poor love,

I’m so sorry for him, you and all the family. I hope that you find the hospice care you want and take every opportunity to get the system to help you if you wish. Just try to make happy memories, all of you, while you are all together.

Thinking of you

Isabelle xx

[Millie09]

I'm very sorry Anne .

sad to read when things like this happen, I never really know what to say having been through similar myself with both parents to other health issues.

I am not on forum much due to a decline in my own Heath but I send strength and prayers to you and the family

Linda x

[Candy12]

It’s so sad to read when things like this happen and all we can do is offer our prayers to you all. I normally find it difficult to know what to say , but in this instance I wanted to say a little about hospice care. It’s an amazing thing where I know you will find support, not only for your loved one, but for all of you as a family. So if you can use the service I would urge you to look into it. I used to work in a unit ( non medical job) and I found the calmness and compassion that was shown to families was truly special . I wouldn’t worry about the children staying it’s helping to keep some normality in your lives and as you said therapeutic, that’s what he and you need right now.

[Nictesla]

Sorry to hear this even though I don't him, we here are like brothers and sisters as far as I look at it. Can he not have a transplant ? May your god be with you.

[AyrshireK in reply to Nictesla]

Sadly Peeps is in his early 80's and although fit and sprightly at the time he was diagnosed at 79 he was deemed too old for transplant based on the UK transplant system. A very sad case but there are so few donor organs around they always give to those who are estimated to have the longest possible life span ahead of them post transplant.

[Nictesla]

Oh I see. that's a terrible state of affairs, We should stop having wars and wasting money on the useless royals and maybe the Boffins could make artificial organs? This planet is in a real mess and run by psychopaths who are a waste of space. More time and money is spent on killing than the living ??

This just isn't right.

[davianne]

I am so very sorry to hear your awful situation. I hope you and your family are coming to terms with the probable outcome. I think having your son and his family staying with you will help take your mind off the horrible situation. I am 72 and was told that a chance of a transplant was unlikely, and that was over 2 years ago. My thoughts and prayers are with you and your family. Take care,

David

[Casinobo]

So Sorry to hear this. God Bless you and your family. It’s a real shame we all have to go through death. I believe in Jesus though, and I know God will come through for us. There surely is a purpose for our existence. Praying for your family🙏

[Grank]

We are so sorry and it is the hardest thing preparing to say goodbye to each other. We hope the day will never come but know it must.

Our experience of hospice care is that it is wonderful for the cares for and the carer. Please don’t hesitate.

You must take extra special care of yourself now as you will need all the physical and emotional strength you are able to muster in the weeks, months ahead.

With regards to the little ones; what better than to surround ourselves with life, and these youngsters we have had a hand in making are our special contribution to the world. Just so long as you don’t have any additional caring duties as it would be very inappropriate right now.

You are in our thoughts and prayers xx

[Remainer]

So sorry to hear your news. Can't imagine what you are going through. I'm sending lots of love to you both, and keeping you in my thoughts. Christine xx

[mncold]

My deepest sympathies to you, Anne & Peeps.

Mary

[Nictesla]

I am sorry to hear that. I can offer no advice but my heart is with you both x

[Nictesla]

My thoughts are with you and your family... and Peeps x