severely Decompensated to compensated - strange

[Harriet-sarah]

we’ll after being diagnosed for having a severe Decompensated liver and they are not sure is my prognosis was too short for a Transplant, I apparently have done a miracle of not been put forward for a transplant cause I’m too well?

I had my appointment with the gastro consultant yesterday and said you have been trying so hard, there is no clinical need for a transplant, which on the surface is great news yeah? But it was my understanding that it was Decompensated because it cannot Compensate. Otherwise, why diagnosis my as Decompensated when I have compensated. So over night it’s completely messed with my head. I said to my mental health team I don’t get it something doesn’t sit right, I have phoned the Liver foundation trust to try and get some clarity and they said it is possible, I think yeah maybe over a very long time period but in 11 weeks? The cannot input more than that as they cannot discuss individual cases. I pulled my NG out this morning myself (I do NOT recommend you do this) it is at my own risk. Why? Well if I’m not at risk anymore I just want to get on living the most normal life can, without the tube. I have told my dietition, who thinks I’m crazy, but I said look, I need to know my base line, yes my bloods will probably take a hit but that is recoverable. I probably still have a low life expectancy so I don’t want to live that life with a tube in me, and I don’t want months on end tapering down. I said I need to feel hungry to eat, and I know with my usual diet,that’s what I need to eat again. I’m already have 1 good medium sized dinner a day, plus my protein shots and milkshakes.

I feel like everything I worked towards was getting well enough to receive a transplant, and I feel like they are not looking how this has and continues to drag on my mental health due to quality of life. I’ve asked to be referred to stoke for a second opinion. She said my UKELD was 53 which ain’t too bad considering, but when I asked what my transplant benefit score was she winced and said now that’s a bit my complicated and she didn’t know. Yeah I bet, cause they just see a score and what list they have not at the patient holistically. So, she then agreed to at least speak to the transplant team, for a ‘get to know you appointment’ but stressed to me this is no way a referral for a Transplant. I just don’t know weather to believe her in her diagnosis, I mean yeah great if I don’t need one great,cause I know the risks, is it worth giving it a shot to increase my life expectancy longer? This is a very confusing time for me

[Chick_atee]

Sorry to read it Harriet. Yes I can see how the 11 weeks would get you thinking! although Ive been told livers are notoriously unpredictable. I can relate in that my situation is a little similar. I am taking 3 drink supplements per day but I am also consuming 3 large meals and 2 to 3 snacks. This is not easy as I’m so full! I’m told it’s vital and I do believe that because of muscle wastage etc…that some of us go through.

I have been referred for transplant accessment but they also said if I am too well then it wouldn’t be something that would happen. Bloods have all improved but again I’ve been told that that may not factor in.

I put down an NG tube for my son for many years before they inserted a peg in the tummy instead for syringe and night feeds. Poor guy, I felt so bad having to do it because you are right. It’s very invasive. At least I only have to change out his peg every 3 months, phew! I suppose I push on with the food, mind over matter because I don’t want an NG or peg.

I hear what you are saying about not being looked at holistically. Fortunately for me I am a Sound and Energy Therapist and that takes me away from the clinical side of things. Not able to practice obviously at the moment but I do my own work on myself and meditate regularly. I try to look at my foods now in a very nourishing and healing way and that helps.

I have a lot of those concerns you have but try to just step back and ground myself if it becomes to overwhelming.

Perhaps I’ve been of little help but I can relate and hope for the best possible outcome for us all.

[Harriet-sarah in reply to Chick_atee]

thank you for taking time to respond Chick I’ve thought about getting a great big tub of protein what builders use aswell, can’t harm! I’m sorry to here about your son that must be very emotional, I thought about a PEG but they won’t do it as they said it’s safer with NG in case I get infection. I’ve woke up a bit anxious today hoping I can eat but it’s renopro and a shake for brekkie then going to try lunch at 13.00 with a shake and renopro afterwards. Then force a dinner down me then another renopro and shake before bed. I’m going to stick with that pattern for a bit and then I get my bloods taken Monday. So, we will see what hit it’s taken, it’s going to be trail and error I think. But this is still better for my mental health, I actually want to get up have a shower put a bit of makeup on and do my hair, I miss doing that I hated looking at myself in the mirror. Your right in mind over matter, I did that when I felt sick, I kept saying I’m not going to be sick, I’m not allowing it, go away, and eventually it did. I do it with my renopro cause I think they are gross in taste no matter what flavour, it’s just a shot, get it down it’s worth it ect. I will keep updating how I go. It’s good to hear your doing well and well done for keeping it up. I’m still confused though cause they said I needed to get well to even take a transplant and I think it’s better to replace liver while I’m a bit better so I won’t have so many complications post op, and I can start afresh. But I have to make the best of the situation I am now in.