Ukeld score dropped while being put forward

Hi, first post so bear with me. Recently I was put forward for liver transplant assessment. My next set of bloods showed a small improvement which dropped my score to just under 50. My condition though continues to deteriorate in real terms of symptoms, tiredness and just poor health. What happens now? The idea of being bumped back of the process leaves me feeling desperate and angry. Any advice appreciated.

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  • My hubby was listed June 2014 with borderline UKELD results - main symptoms are just chronic fatigue, mild HE symptoms, previous portal hypertension, varices all eradicated via banding. He's unable to work, we have no marital activity and can't plan from one day to the next as we don't know how he'll feel.

    After 10 months waiting he was delisted as his blood results improved and as he had a lack of 'major' life threatening symptoms (no jaundice, no ascites, only mild HE) and therefore he wasn't going to get a call any time soon and actually no longer met the criteria for transplant.

    At first we felt as though the light at the end of the tunnel had been snuffed out because we saw transplant as the golden ticket to a life renewed. But, having been on the forum for such a long time we have seen transplant going great (which we'd all hope for) and we've also seen it not working at all and leaving folks more poorly or even worse.

    Transplant is a life saving operation 'only'. They can't guarantee it'll improve quality of life and there are many stories of where it doesn't all go to plan. Hopefully they will go ahead with your transplant assessment, they take lots of bloods throughout the assessment procedure and the decision is taken based on UKELD score together with symptoms.

    Whilst we were 'gutted' following hubbies delisting and there isn't a day goes by where he feels his life is just wasting away/treading water/waiting to deteriorate and he gets very low as he can't live the life he'd hoped and we as a recently married couple can't live the marital life we've waited so long for. HOWEVER, we now try and keep hubby as healthy as possible, we try and walk daily, we make the most of good days. Having 'lived on the list' for 10 months and all it's restrictions of movement we have got ourselves a new caravan and gone on our travels .... ok some days he just has to sleep in the caravan but we've also had some amazing trips.

    Like I say, hopefully you will still get your assessment. But go prepared that it might not lead to listing this time round OR it might if they feel symptoms are serious enough. You certainly get a full MOT at assessment and they'll list if they feel you are poorly enough.

    Keep in touch and let us know how it goes. My hubby and I are back off to hospital clinic next week for his regular monitoring and we've got to trust that if they feel his life/results do deteriorate he'll get his chance.

    All the best, Katie

  • Katie I am so grateful for your thoughtful reply. Many similarities with your husband and I. For me the last two years have been periods of other illnesses and related symptoms dragging down the quality of life. I have malnutrition , a loathsome self-image from the size of me and weekends usually spent recovering from still working all week. My consultants admit if transplant had been readily available the other conditions I have now have would have been far less likely and these are now with me for all of my life irrespective of transplant of not.

    I have always been a positive person who set and met personal challenges and I fight to maintain this mind set but it is the greatest challenge I have ever faced. I have two choices really although both aren't really choices. Be assessed and approved for transplant and fight to make the most of it. Or accept more time like the last two years and accept my days of earning a living are done. I can't survive as I am.

    My docs tell me my bloods and continued working reflect my determination to fight, my compliance with medication, forcing my way forward when every bone in my body wants to drag me down. It is this "coping" which has kept me from being assessed so far.

    The idea of starting down a road only to be hoofed of it, I can only imagine the torture that must have been for both of you.

    My career effectively ended two years ago, my income significantly dropped, and any professional respect went with it. my social life was based around cycling, running and the gym ended then too, I had been super fit and lived life to the full.

    As you bravely say drugs that destroy testosterone provides a unique challenge to married life. I am fortunate to have a patient wife and supportive adult daughter who support me and try to keep things as normal as they can be.

    I try to embrace just still being alive but I want to live, not just cope, not just breathe (thin asthmatic breaths). Credit to you and to you husband for each other. You offer hope when it is hard to see it and I will think of you and your husband if I am pulled back by the limited range of what counts towards the UKekd score. I know it is standardized and so can't count just how much life has been cut out from me and continues to slice away at any slither of real life left in me. I appreciate if they think I can survive as I am then others must take priority. I can understand but I just want to live, not just survive. I will think on, consider again the inspiration you offer from your experience. I hope your husband, and this means you too, get a chance to get life back.

    With respect and best wishes Mikeyboy

  • Like you say Mikeyboy, definitely a lot of similiarities in your stories. Hubby was a welder in heavy engineering (working long hard days). His weekends were spent walking ..... serious walking. He was a long distance walker and for 20-30 years he hardly had a weekend off doing either his own long treks or organised challenge walks including the LDWA 100 miler every year. He was very fit, very driven and put his heart and soul into everything he did. He also made films, filming them, editing and putting music to them etc.

    Literally overnight his life went upside down after a massive variceal bleed and hospitalisation which led to a diagnosis of advanced cirrhosis due to auto-immune hepatitis. He was tea total and never in a million years would you have thought he had something wrong with his liver. That was in April 2012 so since then life has been filled with hospital trips both local and to Edinburgh.

    He has low. low moods. Like you he's thinking is this it? Is this 'life'? On good/better days we go out for walks but these are now about 4 miles max (a massive hit for a man who walked 40+ a day with ease). A shopping trip will wear him out and he often goes to sleep in the car after going half way round the supermarket. He can't concentrate on stuff, his drive has gone. He tries to play computer games to keep his brain active but most of the time turns it off and just flicks through You Tube. Most days he'll have to have a day time nap.

    Like you say its frustrating, angering and depressing. He's not dying of his liver illness but he's not living a great life either. Just feels like the last 5 years have been a wasted 'existence'. Transplant team have advised there is no guarantee they could change his energy levels post transplant and they don't give 'quality of life' transplants anymore because some people don't see a vast improvement. Yes some people do and it's normally people who have been almost at deaths door pre-transplant as they are brought back from the brink.

    You are most certainly not alone in feeling as you do, but, fingers crossed things do go your way. If not at this point then sometime down the line before things get too bad.

    I note you say you're malnourished, are you seeing a dietician? When you go to liver unit ask to see one. We did back in June 2013 - hubby was deemed to be malnourished then (5 ft 5 - 8 1/2 stone soaking wet with muscle loss). He was put on an eating plan which I posted up on here on another post a week or so ago and also got put onto Ensure supplement drinks. He was able to gain both weight and muscle and is now 11 stone (jumped from a life long 28" waist to 34/36" waist). Worth trying.

    Post is the one entitled Decompensated Liver:- healthunlocked.com/britishl...

    Wishing you all the luck in the world Mickey. Keep in touch and let us know how things go. Try to keep living, make the most of any good days, make memories and take each day as it comes. I was meant to go out with mum today on a shopping trip but hubby is in a bad day - feels like he's getting a rare cold so has gone back to bed. Day out postponed but hey ho. Just the way it goes.

    Katie x

  • Hi Kate , can I just say how I admire all your posts that I read , you are such full of knowledge and I admire you . I really hope your hubby gets the chance of a transplant and that his quality of life improves for you both . Such an inspirational lady . My best wishes to you both xx

  • Yes Millie, agree with your comment, this forum is privileged to have Katie share her knowledge and personal experiences, THANKYOU KATIE, (that's shouting so you can hear me from New Zealand!!)

  • yes kate i feel the same way about your posts they are so helpful and i hope that you and your husband have many good days. iv been thinking about you since i read this post a while ago. god bless you both. xoxo

  • I am so where you are now. I wish I had your wisdom - it has taken a long time to accept my husbands illness and the impact it has had on our lives. I've now given up work so we can make the most of every day we have together, and despite it all, we do have some laughs and some joy. Of course there are down days when I just want to crawl into a hole and howl, but that is part of life I guess. My new modus operandi is prepare for the worst, but hope for the best! Hope your hospital appointment goes well sweetheart.

    Fi

  • Sounds nice, we did the steam train to Mallaig as part of our 'Grand Tour of Scotland' last year. Hubby wants to go to Skye at some point although won't be this year (PIP renewal in the summer).

    Cheers for the hints. :)

    Katie

  • Hi Mike I was in exactly same position as you at one stage, went through all the assessment process just to be told my blood's were improving. As you said anger and frustration takes over especially when your whole body is struggling and it's been year after year. As you other medical problems seem more enhanced when your not 100%. The thing I have learnt though is your blood's change constantly and when they do they will guide you through and get you on the list, when I was in hospital 3 months prior to having my transplant I seen the reason why they have to place us in positions we are people were literally dying in front of my eyes. I was in for the whole 3 months because I never realised I was in exactly the same boat, and I scraped by getting mine due to blood results if one of my scores had been one point lower I wouldn't of had. Your blood's tell the full story that is why they rely on them so much. Keep fighting it's the thing what keeps us going I always found one thing, even on my worst days (and I had a lot of them) I found something to smile about at end of the each day x.

  • Hi I had a liver transplant which saved my life but I also had several strokes at the same time. Not sure if they were connected and doing well with both liver and stroke but independence and ability to drive has gone out the window but everyday I give thanks for still being here withy children and grandchildren so all is not lost it's just different xxxx

  • Blood test results can vary, I wouldn't jump the gun, see what the trend is at your next blood test and take it from there, life quality is taken into consideration for transplantation. My UKELD has been up to 60 and current is mid 50's, but like you I am deteriorating.

  • Hi Mike, I was also being put forward for transplant assessment at Birmingham, then I got A letter from hepatologist to say my latest bloods and my score had improved so no assessment. I became mentally prepared for transplant. The hospital that I see hepatologist at said in letter they would keep a close eye on me but that doesn't help my appalling health.

    Just live day to day, eating healthy and take my tablets which is all I can do

    Best wishes to you

    Julie x

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