livure failure

Posted , 2 users are following.

I am attending my first liver transplant assessment appointment in march at st James in Leeds, what will happen ?

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17 Replies

  • Posted

    I doubt many have actually have had a transplant, so the replies will probably be minimal.

    What is the reason for the failure?

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    • Posted

      A multitude of reasons hereditary, complications of diabetes and unbeknown that I had any liver problems I used to drink alcohol after a very stressful day at work in one of the emergency services, I have not had any alcohol for two years but.have had to go on insulin now as medication weren't working after incorrect medical support from an old G.P

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    • Posted

      Okay. Tell me, how much has the alcohol played a part in this? Before you think I am being judgemental, I spent time in hospital for liver failure due to alcohol.

      I need to know this before I can make an educated guess at what will happen.

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    • Posted

      I don't really know because they only blamed alcohol to start with until I was hospitalised and many tests were done and quite alot of various doctors were involved, it was only in Nov 2016 that the main consultant said that she had not been made aware about the hereditary part and problems with diabetes in the past because it was a new area I moved to with a different liver team, consultant said the amount of alcohol although it has enhanced the problem it is smaller than others she treats who are at my level of failure, but at times I would have a bottle of wine to myself sometimes it would be 4 or 5 pints with colleagues after work, none of which were every night but clearly unsuitable amounts for me as well as the other things, this has been going on for nearly two years, and I was only told mid 2016 that further maintenance would not sustain life for many years, they treated me from the start never mentioning transplant necessity, so it came as a complete shock when at a routine follow up appointment I was told I needed transplant

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    • Posted

      In which case, I would imagine that the first one, will be that they want convincing you are not going to start drinking again. They don't like handing out livers that are in limited supply to people who are going to ruin them again.

      They will most likely run through what is involved in a liver transplant, the whole process and what life will be like afterwards. The process of a liver transplant is not a simple one and life will be a bit different afterwards - I believe your immune system is not as effective and you have to be more careful about catching bugs.

      They will also I imagine start doing to tests to find what sort of chance of suitable matches they might get, as they cannot give you any spare liver that is ready for transplant.

      I have only answered this question, because I suspected that nobody else would. And I only answer it from a point of view from someone that has been in hospital for liver failure and at one stage briefly had a look at liver transplants - you don't tend to get any threads in this section about them.

      I would suggest you call the hospital and ask them what is actually involved at the first appointment and if you are too scared, then ask someone else to on your behalf. Then you will know for definate.

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  • Posted

    If you don't mind me asking, how old are you and how long have you been under the supervision of a gastro?

    You can PM me if you prefer not to answer on the forum.

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    • Posted

      I was 50 last Thursday but I don't feel it apart from at the moment I do I feel tired and everything's feels achey, but I know why, I am supposed to eat every 2hours but when your not hungry its difficult, I have been under gastro team for about 2 years now.

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    • Posted

      Oh less than me then, I came out of hospital June 2014. I'm about 18 months older than you.

      You obviously had the dietician giving you nth degree of how you must eat little and often and the days of eating a big cooked breakfast and skipping lunch, are gone. Plus, the have a snack just before you go to bed so that your liver has something to go on during the night.

      I said to her, if my diet is so important and I must eat so regularly, why did they give me the regular slop, at the regular times when I was in hospital in the gastro ward (for almost two months)? Poor girl didn't know what to say.

      Anyway, the reason I asked was, I'm not as bad as you by the sounds of it, but it would be just my luck to make it to 65 and then they turn around to me and say, sorry, you're too old now.

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    • Posted

      That made me laugh I should have thought of that but before I could I had a nasal tube fitted, then they moaned about my blood sugar being to high for my diabetes I couldn't win, check with your specialist what level your liver is at, mine apparently isn't at all reversable.

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    • Posted

      Well, I actually have a hospital appointment with the gastro on Friday morning, but despite pushing him previously, he was not very forthcoming. So I shan't be getting my hopes up.

      Although cirrhosis is not reversible and my liver is decompensated.

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    • Posted

      What does decompensated mean? They havnt thrown that one at me yet.

      I went to see my specialist last Tuesday and mentioned about my last banding via gastroscopy, and low and behold when she went to speak to the top specialist who I normally see,when she came back she apologised and said my next one to check if it had worked was way overdue, funnily she said sorry it had been overlooked and they would try and fit me in as soon as possible,, do you ever get the impression your a second thought coz I do sometimes

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    • Posted

      When you have cirrhosis, your liver will either be compensated or decompensated. The former means that the damaged liver is still able to carry out its normal functions with the good bits that are left.

      Decompensated means that it can no longer function 100% and medicatiosn will usually be given to help, such as lactulose to remove ammonia and spironolactone to stop ascites recurring. You will undoubtedly have decompensated liver.

      Luckily for me, carvidelilol and no alcohol meant my oesophageal varices have gone, but they are very dangerous. I didn't need banding, but they took my blood pressure every four hours, as if you don't actually cough up blood, a drop in pressure is the only way they can tell. I did object to being woken up at 2:00am.

      But if have you had them banded, it is very important to check on them, and they can become very blasé about it. My last gastro who I had when I came out of hospital, missed off a whole load of things he should have done, plus follow ups. I only found out when I got my patient records and they included up to date letters from the gastro to my GP. So I made my current gastro follow them up.

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    • Posted

      You can request them and they are free, but the hospital is allowed to charge you an administration fee of up to £50.

      If you have a lot of records, I can garauntee that it will cost you the whole £50. But in fairness, it must take someone a long time to collate them all, photocopy them and send them recorded delivery.

      Look up your hospital or where ever you have treatment (assuming it is NHS) and contact PALS (patient liaison services) and ask them. You will need to pay before they start the process of getting your records.

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