I have a decompromised liver, I came out of hospial in January, followed up in March talking about a transplant for me, but they wouldn’t put me on the list cause they said my body wasn’t strong enough yet. I have another appoint in a couple of weeks to see if I I am now I’m strong enough to even take the operation as she said I’m very high risk. Since March I’ve been NG fed orally eating plus protein shakes and taking all the many meds I have to take. I feel like I’m tired of it now, I’m tired of feeling sick all day, tired of constantly putting “stuff, tablets and feed” into body. I feeling like I’m getting weaker cause I’m so tired, my eyes look blood shot I ache, I sweat at night where I’m soaked, I can’t get myself going until after midday cause I’m also spending my mornings on the toilet with painful loose stools and feel like I’m going to be sick any moment. I have restless legs at night and when I’m awake the room spins sometimes. I am so tired of feeling this way. And I still don’t know if I will be put on list. If they say no I’m tempted to let go and let nature take its cause,as this is no way to live.
Feeling fed up of feeling ill - British Liver Trust
Feeling fed up of feeling ill
Hi Harriet-Sarah..Bless you, im so so sorry to read how you are struggling hun ,
You really should not be living this way and especially on your own .
May I ask what liver hospital are you at ? .. can't you mention to them on your next visit exactly what you have said in this post to us here on forum surely there is alternative support out there for you .
Your GP surely isn't pulling their weight !!
I'm with Birmingham healthy minds , due to my mental health issues, on waiting list to start my face 2 face but they helped me a lot when I was struggling back in January this year with referring me to support ,even though it was only telephone I found it helpful in a way, as I myself live alone and I totally understand how you feel hun .
Please try not to give up , as hard as it may be , when we are poorly and very weak its such a bad place mentally 😢...
I have restless legs , due to neuropathy and a mix of previous slipped discs , I take pregabalin for this , it can help to an extent ,and safe to take as it does no further harm to the liver, without them I'd be crawling the walls .
You say your end stage liver disease now hun , and I pray that the hospital will say your strong enough for transplant, I wished I could be of further help to you but I wanted to let you know your not alone and if you want to PM me anytime please do
Best wishes linda xx
Hi Harriet-sarah
I am so sorry you are feeling this way - we are all different in how/why we arrived with liver issues but we all suffer mentally in similar ways. It can be very hard and your situation seems very extreme indeed😕
Help is there and though today you feel as you do, round the corner is the new you - it's just typical that no one can tell you the length of the corner just yet.
They will be desperate to put you on the list but they will only do this if they feel you can survive the operation (physically and mentally). Building your strength and eating/processing foods should be one of their priorities Do you have your own liver dietitian assigned, who helps you on a regular basis?
Have you been admitted to your liver hospital? where they can keep you under obs whilst they sort out feeding/stools/spinning room etc.
It can seem like a never ending train of pills, systoms, lack of sleep - repeat. No one likes hospital but being admitted the 2nd or 3rd time was great for me as they could tweak my meds on a day by day basis - it was far more reactive and immediate than visit, consult, change meds, go home, return x weks later.
Easy to say but a lot of this is about staying mentally as strong as you can - take any positive as a major step and any negative as as step towards a new positive. Trite to say I know.
Please hang in there and let us know if we can help in any way 😍
Yes it's very upsetting and distressing. I feel similar...very ill constantly and not getting anywhere.I am also unable to eat so eat mainly liquid food.
Are you on the NG tube because you are unable to eat?
I’m at New Cross, have only seen Gastro consultant (she used to work with transplant team at Queens in Birmingham where my clinic will be once I’m on the list. And yes lim fed overnight and all morning on NG Osmilite. Thank you all for your kind words every now hands on what they say in a few weeks, then we shall go from them there. Xx and yes my Gp is crap he doesn’t care fore me, he’s not experienced he asked my once to self assessment myself and fill out a massive form to see if I was palliative!
britishlivertrust.org.uk/in....
The British Liver Trust has a nurse operated helpline you can ring at specific times for advice and support.
Dear Harriet-Sarah
As PipM82 has kindly shared, if you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
We’re sorry to read of the challenges you feel you have faced with your GP. Here is the link to our Patient Charter which states clearly the rights you have, in terms of your care, as a patient with a liver condition.: britishlivertrust.org.uk/li...
We also have this information on our website, which may be of interest:
britishlivertrust.org.uk/in...
Take Care
Best wishes
British Liver Trust
I’ve had the worse 24hours, had to go to A&E last night just for a blocked NG, no one is trained to do it in the community so had to go, only to be ignored for hours on end cause they didn’t want to do it, and they made me wait until the nutritionist’s were on shift which meant 9.30 finally got it done, my ex is telling me to drink again cause he won’t collect the rest of his belongings so I had to get back cause the police was asking where I was, I spoken to police the police man phoned him to tell him he had to get his stuff and he even hung up on the police. Then hassled me saying he was coming now to get his stuff, he came and left. Then I tried to talk to mental health team but they are too busy I phoned my dad for support he told me to stop ‘harping on’ which also upset me. Im on my own
I can’t take much more of all this bullshit and no one is helping
Harriet, I wish we could give you a big hug. You’ve got so much going on at the moment. It sounds like it’s one crisis after another. Are you somewhere safe now? Sending you the strength to get through this. One day at a time. Focus on getting strong and ignore what your ex is telling you.
I’ve had a letter today saying my prognosis may to too short for a transplant
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