I have laid bare my soul on this Forum, many a time during the past two or three years, whilst my NASH to Cirrhosis story has been at its worst. I have received lots of advice, comments and lovely support at some of my more precious moments, from many of you on here. I have also made a real effort to support some of you, if I have thought something I may say might just help one or more of you. However, I am currently at a point where I cannot help myself any more, let alone anyone else. I still have lots of unanswered questions that I cannot gain or have access too. My biggest question (and I really don’t want to upset or offend anyone on this), is why oh why can I not be considered for a transplant at all (as I was so bluntly informed at diagnosis last year), when I have never smoked, or drunk alcohol and I have have always tried my best to be a kind and considerate person. Am I angry - yes I really am but this is the first time I have openly expressed such anger in an open group like this. My anger covers everyone right now, including myself. Someone told me recently it was ok to express your anger. I’ve always tried so hard to control mine but I can’t anymore. It’s all just a bit too much at the moment. Sorry!!
When it is all getting too much. - British Liver Trust
When it is all getting too much.
I've just sent you a pm xxxx
Hi, vent away. It’s truly understandable that you would feel that way. Life deals out some very cruel cards and must be especially hard when you have done nothing yourself to cause that damage to your body. That is no judgement on anyone who has, as I drank too much also.
I’m sure those you have supported in past have really appreciated it, and we are all hear to listen and support you now.
Feels very frustrating not to be able to wave a magic wand and cure everyone’s ills on here as so many sad stories, and unfortunately words seem sometimes empty in trying to help either, but sending a big hug and hope that some solution/treatment can be offered to help in future.
Hi Splodge.
All I can say is never give up hope because sometimes we find ourselves in a dark place when this is all that we have .
I spent over four years with the words terminal and paleative care hanging over me with no hope of a transplant and no one could have been more surprised than me when I was put forward for transplant assessment at my 11th hour. Even then I was told when going for the assessment that I only stood about a 30% chance of getting a transplant. Yet here I am not far off 2 years post transplant and feeling very well within myself, a time I thought that I would never ever see.
Hang on in there and just do all the things that can to keep yourself as well as possible. Medical science is advancing all the time and decisions made one year may be altered the next.
Sending you positive vibes and very warm wishes.
Alf
Hi Splodge, sorry to hear you are feeling so low just now.
I am guessing the decision no to transplant is due to your age and several other co-morbidities.
Sadly when folks are assessed for transplant they have to be both ill enough with their liver (even though you have cirrhosis you might not yet be at that stage) and yet fit enough to get through the procedure and lengthy recovery period. You list several other health conditions on your profile as well as your liver issues and sadly all those combined are likely to be behind the decision not to put you forward for transplant assessment. Part of the assessment also looks at your coping mechanisms and mental health because of the stress of the procedure and the emotional issues that come with having such major surgery and the medications involved.
I know it must be absolutely gut wrenching to have a decision given to you so bluntly and perhaps it should all have been explained as to why transplant wouldn't be an option in your case.
I can't recall how symptomatic you are with your cirrhosis but if you are still able to do a lot of normal activities then I would be trying to live every day to the fullest.
When my hubby was delisted because he was doing well (in medical eyes) we saw it as a kick in the teeth because his sleep pattern is all over the place, he's fatigued, struggles with cognitive stuff because of the fatigue and what's been described as minor HE - he feels far from well.
However, through the forum we found that transplant isn't always a golden ticket to life renewed and there are no guarantees that either you get through the op or the recovery or indeed go on to a happy ever after. A lot of folks seem to have a lot of post op issues and seem to always be waiting for the next issue with blockages, rejection, issues with kidneys etc. etc. etc. We gradually came to the realization that in the grand scheme of things hubby is doing 'ok' - he has no ascites, oedema, no bleeding, no jaundice, no itch, no major HE. Despite his issues he can still on occasion go out for fairly lengthy walks and such like, he can push himself even if he pays for it later but importantly he lives life. He had issues with adjustment depression - adjusting to this new life but he has gradually done so, every so often he'll go into a low where he mourns his old life but he has come to the point where he sees it important to live the life he has and what will be will be. He's far from well but hey that's where we are at and that's what we have to make the most of.
Hopefully you can pick yourself up, dust yourself down and grab life.
Katie x
Hi Splodge,
We too are sorry to read that you are feeling so upset. Usually a consultant will take time to fully explain the reasons why a transplant is not appropriate, it must have been a horrible shock to be told so bluntly.
Could you maybe ask for another appointment to have time to fully discuss the medical reasons and rationale? Maybe take someone with you for support?
Please keep talking here, the forum is full of support and understanding as these comments to your post show
Warm wishes
Trust1
A day or two has passed since I ‘vented’ on here, to the shame of my own embarrassment amid my weaker moments of self pity. I’m truly sorry about that and I hope I did not upset anyone. Nevertheless, the negative vibes do not go away, just because I lost my usual self control.
I am extremely aware, that, despite our misfortunes and (yes) sometimes our bad decisions that have brought us all to this Forum, we do need each other, (arguably, more so than any other group, under Health Unlocked and being a part of this Liver Forum). . (See my 2nd post tonight).
A lot of us have made the (justifiable) mistakes of arriving fresh into the group and try hard to explore the reasoning/meanings of their own current plight. They therefore ask the same questions that have been asked by many a ‘newbie’.......”Ive just been diagnosed with...xxxxx...and I don’t know what it means. Please help me. “
“What do these blood results mean? These lead Admin to repeat, over and over again that such questions will never be answered by the Team and/or other means and give the same repetitive answer, because they have no choice.
The same questions have been asked and the same answers have been given, over and over again.
May I respectfully make a suggestion, that the Trust try to make the most common FAQs easily available and accessible whenever new people join us. At the moment I find it quite hard to navigate the site, so that I can learn something, that a newer member is also looking for, just to refresh my understanding, due to a I significant feature of my illness == memory loss. I do make my own notes, but then struggle to find them!!! I guess something like a Glossary would be helpful.
People regularly use acronyms to talk about their particular form of liver disease. I know why this is in common usage among the more studious herein, but it makes it hard to know what some of these letters mean. This particular ‘Post’ is more to do with the Admin side. I have another issue, unrelated, which I shall post on here separately so these do not get mixed up.
To Admin- please do not be offended by my suggestion. I am hoping this will help all of us and not just new and worried investigators.
You haven't offended anyone. Take good care
You lost me at glossary and acronym 😁😁
Glossary = A list of common terms associated with a particular disorder and everything to do with it.
Acronyms = a way of writing common disorders or related disorders by just using the first letter of each associated word eg. Hepatic Encephalopathy = H.E. Or H.C.C. = HepatoCellular Carcinoma. It makes writing much quicker.
Hi,
Thank you for your feedback which we always welcome. We will take into consideration your points. However, please note on the right of the posts we have 'pinned' the community guidelines and rules which clearly stare what is permitted on the forum. All members are asked to read these when joining the forum.
We also have a link pinned to the Trust's patient guides which cover many conditions/ diseases. We would encourage anyone who has a more complex query to look at the website and also call Kirsty or myself on the specialist nurse helpline or alternatively email us. We work 10am to 3pm Monday to Friday.
Best wishes
Trust1
Hi
How are you feeling this morning?
You certainly don't need to say sorry, if you need to vent , feel free to do so anytime because you will feel worse bottling things up.
I will give you a ring later if that's ok?? All my love Lynne xxxx ❤️🤗🌈💜 xxxx
Thank you. This week has been quite horrendous but, today, I felt a little better. I wii be in touch.
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