Failing liver - how will it end.
Discussion
I received the very sad news yesterday that my very close friend (and Badminton buddy) is dying.
9 months ago he was diagnosed with Myeloma but has responded very well to the treatment and thus far was told there was no reason he shouldn't live for some time to come.
In the last few months it's come to be found he also has developed Amyloidosis, which deposits protein in the organs.
In his case, it has left his liver devastated - about 70% of it is 'stiff'.
He's just been told his prognosis can be counted in months and not years and to say the least, it's a shock, seeing as he's been responding to the other treatment so well.
Apparently no chance of a transplant due to the Myeloid and low immune system so he's been sent home to die.
[b]My question really is how does it end - when your liver fails?
Will he be in much pain?[/b]
I couldn't ask him any questions yesterday and don't think I really want to - I've never seen him cry before, this big tough Yorkshireman, who's always been blunt in everything he says and does.
Me asking stuff he probably wants to shut out won't help, will it.
I feel so helpless, and so sad and sorry for him and his partner that I don't want him to end his days in pain.
Been stewing all day, needed to vent.
Thanks.
9 months ago he was diagnosed with Myeloma but has responded very well to the treatment and thus far was told there was no reason he shouldn't live for some time to come.
In the last few months it's come to be found he also has developed Amyloidosis, which deposits protein in the organs.
In his case, it has left his liver devastated - about 70% of it is 'stiff'.
He's just been told his prognosis can be counted in months and not years and to say the least, it's a shock, seeing as he's been responding to the other treatment so well.
Apparently no chance of a transplant due to the Myeloid and low immune system so he's been sent home to die.
[b]My question really is how does it end - when your liver fails?
Will he be in much pain?[/b]
I couldn't ask him any questions yesterday and don't think I really want to - I've never seen him cry before, this big tough Yorkshireman, who's always been blunt in everything he says and does.
Me asking stuff he probably wants to shut out won't help, will it.
I feel so helpless, and so sad and sorry for him and his partner that I don't want him to end his days in pain.
Been stewing all day, needed to vent.
Thanks.
Edited by Zip106 on Thursday 10th March 20:29
If you are asking how he is going to die then perhaps take comfort from the fact that death from liver failure tends to be something that can be managed well. Pain and other symptoms can be managed well.
In due course he will be involved with the palliative team and if he is not already, ask him to talk to his hospital consultant / GP to enquire about palliative support in the comminity and talk about a hospice - if that is what he wants.
Dying, as traumatic as it may seem does not have to be a lonely, frightening affair full of pain and misery. Both he and you need to understand that. What happens next is very much about creating the 'best possible death'.... and that involves a degree of being proactive and a degree of understanding and it very much a work in progress with respect to how he feels and how he comes to terms with what is happening to him.
As for you, no one can tell you the right thing to do to help your friend - quite simply there are no 'rights' and 'wrongs' with respect to this. If you care about him then you'll do all you can to help - do no more and do no less than you feel you can and you are capable of. Try not to leave any unfinished business and also, if you are able to, try and help him come to terms with his own mortality... and the only way to do that is to get your queues and prompts from him. But in doing so, remember to also process your own fears, thoughts, worries, stresses, fears of death... what ever it is.
I think that people cannot advise you on the best thing to do, but I will offer you one piece of advice that I hope you do take on board. Try and have no expectations, no perceptions and no agendas. Try not to imagine how it will be, what will happen and how you and he will feel about anything at all... until it happens. You won't know until it does, and that trying to second guess and predict will only be a waste your energy. I learned this through watching my missus die. She was the one in the bed and she said it regularly... it is what it is. And that is the hardest thing to accept, but once you do, you can really be there for your friend.
Don't stop posting - there are MANY people here who though they don't know how you feel are more than willing to support you in any way they can. He is not alone and neither are you. Please don't forget that.
In due course he will be involved with the palliative team and if he is not already, ask him to talk to his hospital consultant / GP to enquire about palliative support in the comminity and talk about a hospice - if that is what he wants.
Dying, as traumatic as it may seem does not have to be a lonely, frightening affair full of pain and misery. Both he and you need to understand that. What happens next is very much about creating the 'best possible death'.... and that involves a degree of being proactive and a degree of understanding and it very much a work in progress with respect to how he feels and how he comes to terms with what is happening to him.
As for you, no one can tell you the right thing to do to help your friend - quite simply there are no 'rights' and 'wrongs' with respect to this. If you care about him then you'll do all you can to help - do no more and do no less than you feel you can and you are capable of. Try not to leave any unfinished business and also, if you are able to, try and help him come to terms with his own mortality... and the only way to do that is to get your queues and prompts from him. But in doing so, remember to also process your own fears, thoughts, worries, stresses, fears of death... what ever it is.
I think that people cannot advise you on the best thing to do, but I will offer you one piece of advice that I hope you do take on board. Try and have no expectations, no perceptions and no agendas. Try not to imagine how it will be, what will happen and how you and he will feel about anything at all... until it happens. You won't know until it does, and that trying to second guess and predict will only be a waste your energy. I learned this through watching my missus die. She was the one in the bed and she said it regularly... it is what it is. And that is the hardest thing to accept, but once you do, you can really be there for your friend.
Don't stop posting - there are MANY people here who though they don't know how you feel are more than willing to support you in any way they can. He is not alone and neither are you. Please don't forget that.
Thanks DMN, I know you of all people know what it's like.
This is the first time in my life that I've known someone who is actually dying - and I'm not sure how to deal with it.
My friend is a very private man - doesn't really show emotion and although I've known him for many years I don't know everything about him.
I know he's spoken to Macmillan nurses and has requested to be at home for as long as is possible.
What I'm unsure of is how often should I go and see him?
What if he's not well enough to see me?
Am I intruding?
Jees, I'm scrambled with all these feelings of doubt that I'm not going to be as good a mate as I have been, that I'm not going to be doing enough to help him, that I'll be intruding on his last months with his partner.
Just don't know what to do...
I feel so guilty saying that it's hard for me - f
king hell - he's dying and I'm thinking about myself.
Regards the liver failing - when it's totally failed does he just die?
Surely his heart won't just stop at the same time, so what happens?
Does he bumble along in a hospice or wherever with no working liver until everything else packs up?
And forgive me - I'm not as adept at writing things, feelings, down as some of you on here.
This is the first time in my life that I've known someone who is actually dying - and I'm not sure how to deal with it.
My friend is a very private man - doesn't really show emotion and although I've known him for many years I don't know everything about him.
I know he's spoken to Macmillan nurses and has requested to be at home for as long as is possible.
What I'm unsure of is how often should I go and see him?
What if he's not well enough to see me?
Am I intruding?
Jees, I'm scrambled with all these feelings of doubt that I'm not going to be as good a mate as I have been, that I'm not going to be doing enough to help him, that I'll be intruding on his last months with his partner.
Just don't know what to do...
I feel so guilty saying that it's hard for me - f
king hell - he's dying and I'm thinking about myself.Regards the liver failing - when it's totally failed does he just die?
Surely his heart won't just stop at the same time, so what happens?
Does he bumble along in a hospice or wherever with no working liver until everything else packs up?
And forgive me - I'm not as adept at writing things, feelings, down as some of you on here.
Edited by Zip106 on Thursday 10th March 22:34
Edited by Zip106 on Thursday 10th March 22:46
First things first....
What you are experience, today of all days is the most normal thing in the world. It's a combination of many things and many of them will be you bumping into your own fears and worries as well as what is happening to your friend. Try not to feel guilty - simply because it's not helpful!
It's good that the mac team are already involved - they can be incredibly helpful and they will be able to support in many and varied ways.
With respect to the other things you mentioned - the best thing at times is simply to ask. It is very difficult as a friend to not feel that you are intruding in a family, especially his wife. But unless you ask, you won't know for example that she might really want other people there to support him and her. Everyone is different in this and the best best apporach is one of openness.
You will leaen very quickly to sense and be aware of clinical changes and you will learn to take your cues from them - often it's not the words that are said from which you get your cues - it is what is not said. You know your frind better than most. Don't step on eggshells because he is dying.. because that is one of the hardest things to accept. It's the same with being honest about how you feel and in doing so I suspect he will be the same. It's Ok to say you're shocked at the news, it's OK to say it really upset you. It's all about trying to find the balance and a way forward in your friendship. Ask his wife what she thinks and whether thinks it would benefit him that you come visit.
... and you need to trust yourself and your years of skills as a good friend. You know what your boundaries were before, in part they might change, but as an 'opening gambit' with this.. just be yourself and be honest and open. Because there's a fair chance with all of this, that if you think you are scared, he's probably 100 times more so. So be scared together and work through it together. That's all you can. REALLY, you don't need to worry about doing any more than that. be a friend the way you've always been a friend. Laugh when he wants a laugh, be serious when he wants to be serious and take your cues from living in the moment and living moment by moment.
One day he will die.... but that is not what matters. What matters is NOW, right NOW and making NOW the best NOW that NOW can be. That's all there is to it. Trust that that is all you need to know and all you need to do. The rest will just follow from that. It really will. Steady yourself with that belief. This won't be easy, but you can make it easier - that much is in your power and in your control. This is his destiny and he can remain in control and you can be there by his side in ways that matter to the both of you. Trust yourself, you will do fine.
What you are experience, today of all days is the most normal thing in the world. It's a combination of many things and many of them will be you bumping into your own fears and worries as well as what is happening to your friend. Try not to feel guilty - simply because it's not helpful!
It's good that the mac team are already involved - they can be incredibly helpful and they will be able to support in many and varied ways.
With respect to the other things you mentioned - the best thing at times is simply to ask. It is very difficult as a friend to not feel that you are intruding in a family, especially his wife. But unless you ask, you won't know for example that she might really want other people there to support him and her. Everyone is different in this and the best best apporach is one of openness.
You will leaen very quickly to sense and be aware of clinical changes and you will learn to take your cues from them - often it's not the words that are said from which you get your cues - it is what is not said. You know your frind better than most. Don't step on eggshells because he is dying.. because that is one of the hardest things to accept. It's the same with being honest about how you feel and in doing so I suspect he will be the same. It's Ok to say you're shocked at the news, it's OK to say it really upset you. It's all about trying to find the balance and a way forward in your friendship. Ask his wife what she thinks and whether thinks it would benefit him that you come visit.
... and you need to trust yourself and your years of skills as a good friend. You know what your boundaries were before, in part they might change, but as an 'opening gambit' with this.. just be yourself and be honest and open. Because there's a fair chance with all of this, that if you think you are scared, he's probably 100 times more so. So be scared together and work through it together. That's all you can. REALLY, you don't need to worry about doing any more than that. be a friend the way you've always been a friend. Laugh when he wants a laugh, be serious when he wants to be serious and take your cues from living in the moment and living moment by moment.
One day he will die.... but that is not what matters. What matters is NOW, right NOW and making NOW the best NOW that NOW can be. That's all there is to it. Trust that that is all you need to know and all you need to do. The rest will just follow from that. It really will. Steady yourself with that belief. This won't be easy, but you can make it easier - that much is in your power and in your control. This is his destiny and he can remain in control and you can be there by his side in ways that matter to the both of you. Trust yourself, you will do fine.
Zip106 said:
...And forgive me - I'm not as adept at writing things, feelings, down as some of you on here.
You're quite wrong there! You seem to have put in writing the sorts of things most people would have in their subconscious but not think of asking. I would be concerned that I would break down when I visiting a friend in this situation, and I'm not sure if that's something taht should be suppressed in such circumstances. Either way, I do know that when my sister died when I was young, my parents appreciated all contact with friends, and were disappointed that some kept their distance just because they didn't know how to react*. Hope it all goes as well as it can for you and your friend.Drvin me nuts - I stumbled upon your thread a couple of days ago. Read the first few posts, then jumped to the end as I often do, and was dumbfounded by the outcome. Really felt for you but didn't know what more I could add to the thread, which is probably the absolutely worst reaction!* It's great to see what you can achieve now in helping others as a result of your expeience. Take my hat off to you.
tobeee said:
Zip106 said:
...And forgive me - I'm not as adept at writing things, feelings, down as some of you on here.
You're quite wrong there! You seem to have put in writing the sorts of things most people would have in their subconscious but not think of asking. I would be concerned that I would break down when I visiting a friend in this situation, and I'm not sure if that's something taht should be suppressed in such circumstances. Either way, I do know that when my sister died when I was young, my parents appreciated all contact with friends, and were disappointed that some kept their distance just because they didn't know how to react*. Hope it all goes as well as it can for you and your friend.Drvin me nuts - I stumbled upon your thread a couple of days ago. Read the first few posts, then jumped to the end as I often do, and was dumbfounded by the outcome. Really felt for you but didn't know what more I could add to the thread, which is probably the absolutely worst reaction!* It's great to see what you can achieve now in helping others as a result of your expeience. Take my hat off to you.
Tobeee, I would recommend you read the whole of DMNs thread (just not at work
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