Liver transplant

Hi hope everyone is well. I have posted before about me having cirrhosis and me having tipps which have caused me numerous problems anyway my consultant referred me to leeds, i had my appointment yesterday and was shocked that they want to consider if i am fit enough for a transplant, its only been over a year since i came out of coma and i was told previously that things should settle down after 18 months or a little longer but seems to be that's not the case anymore. To be honest i am shitting myself i not got a clue what to expect now.....any help of anyone would be great at moment

21 Replies

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  • Hi JoJo

    The only thing I know re:transplant is that every one, is so different, but the people I have met on this site, say it has given them a new lease of life, they can do all the things they could not do before, I bet you know all this, I have cirrohiss, portal hypertension, large liver and spleen, with a GI bleed 2013, in don't know what has lead you to transplantation, but it can only be a good thing for you, and am sure everything will be explained to you by doctors, sorry no help to you, but someone will respond to you, who is more informative than I, hope everything goes well, which I'm sure it will, sorry wasn't more helpful, keep well and let us know how you get on. Annette

  • Thank you angse i have had all things you mentioned i think its fact i keep getting HE and have been in hospital 4 times already this year i am sick of being so tired i feel like an old woman and not 38 but thanks for the response its just nice to know i am not only one going through this x

  • Sorry I could not be more helpful with the advice, I sincerely hope all goes well for you. Good Luck. Annette

  • Please don't give up prayers for you!

    Benita

  • Hi Angse, I have all the same problems as you mention and just about to attend next review, they say as it's now a tumour the long term option is a transplant, as I'm sure you went through a lot of emotions, I'm still in early stages of understanding it and how the procedure affects people and not spoke to anyone as such yet as I'm trying to block it out but that isn't working either. Any advice from what to expect would be gratefully received, thanks Gill

  • Hi Gill

    As I said to JoJo, I know really nil about transplant, only that people who has had transplant eventually have a new lease of life, to be fair, I know of massive GI bleeds, portal hypertension, cirrohiss, but not much else I'm afraid, although I have all these symptoms with cirrohiss, I am not deemed unwell enough for transplant hope you keep well ! Annette

  • Annette, just wanted to let you know I appreciate everything you post on here and from everyone

    Love Benita

  • Hi, I'm sure you will be ok. The fitness thing in a normal routine to go through. I have an asessment on May 11th but this is my 2nd transplant the best advice I would give is try not to stress. Not an easy thing to do but take things as the happen and one at at a time. Take care

  • Thank You brummi am hoping once the shock has gone i will be more accepting of my fate. I hope everything goes well for you i really do xx

  • All I can say they sent you to the best place I have been going with my husband here for over a year now they all lovely an help full.

    where ever they sent you from the ya is only so much they know anything like Barnsley they know bugger all.

    About cirrhosis they told my husband he only live up to 3 months but he's still here.

  • I am under Manchester hospital they have been good they just didn't know what else to do with me. But its good to hear your positive review of leeds thanks x

  • Jojo, the fact you've already had a TIPPS and now the recurrent bouts of HE shows your liver is really far gone so the best course of action is for them to assess your suitability for transplant. It is a massive operation so they need to find out that you are healthy enough to undergo it so they can minimise risks during the operation and the post-op period plus they need to rule out any other issues which might be a bar to transplant.

    The only way your health is going to improve at this late stage is to proceed to a hopeful transplant. It is the same boat my hubby currently finds himself in but he hasn't had half the symptoms you have.

    If you have a hunt back through my posts you'll find details of my hubby's transplant assessment week - although it was done at Edinburgh it should give you some idea of the tests and things involved.

    Hopefully at the end of the week they'll decide that listing is appropriate and you'll then start the wait for a new liver and hopefully you will have a short wait and it will all go smoothly, sadly, from recent posts on here you'll note that unfortunately not all do but trust in the professionals and hopefully by taking it one step at a time and following all docs orders you'll get there and fingers crossed get your life back.

    All the best to you, from Katie :)

  • I think that's the conclusion they have come too about me just wish i had been told by my own consultant instead of travelling to leeds and feeling like i had been hit by a train it was a big shock. Thank you for the reply though and i will have a look at your previous posts give me some insight in to what i can expect. All the best to you and your husband xx

  • I think Jojo it is only a transplant unit which can say they are going to assess you for transplant, my hubby's consultant locally (gastro not hep) referred us to Edinburgh unit in 2013 (a year after diagnosis of chronic cirrhosis due to an auto-immune illness) and hubby was treated there for a year before his consultant on transplant team decided she'd done all she could and transplant assessment was best option.

    Hubby was assessed in June last year and needed an operation on some aneurysms which they discovered during tests at assessment week, his listing went active 3rd July last year and still waiting though at present there has been discussion about possibly removing him from the list as he is relatively symptom free (varices obliterated, no major HE - taking Rifaximin for suggestion of some ,minor HE symptoms, never had ascites nor major jaundice). They are still talking WHEN transplant needed rather than IF but at the moment they feel they may possibly make him more poorly by transplanting than letting him keep his own liver for a while longer & in the mean time he'd be better/we'd be better getting on with some living without being restricted by where we can go and when.

    I do feel it sounds like your liver isn't doing well at all and that TP is going to be your best option.

    Hope all goes well at transplant assessment.

    Katie xx

  • Makes sense thanks dont feel as bad now to my consultant lol they have started me on rifaxmin as well so fingers crossed wont have many more he episodes. I am hoping it would of been later rather than sooner but the docs do know best, its a good sign if your husband coping quite well at moment may it long continue

  • I had a liver transplant 2 years ago at St James in Leeds. I can reassure you that you are in excellent hands. They will give you the very best of care possible. I wish you the best of good fortune.

  • Thank you and congratulations on your transplant being a success x

  • Hi i am 2 years post transplant as of April 7th.

    I had hep c lying undetected since a blood transfusion given in 1986 after a motorcycle accident when i also lost my spleen. The hep led to cirrhosis which eventually led to liver cancer.

    I am 46 now and also was in shock when told i needed a liver transplant. I was working right up to the day of my call to go in to Birmingham QEHB, I live in Northamptonshire but was referred to Birmingham- they have been brilliant.

    Not having a spleen caused concern for the operation and the previous year i had undergone treatment for hep c which is similar to chemo.

    I to was bloated and jaundiced but the day after the op my eyes were back to being white not yellow.

    I was off work 9 weeks and returned to work slowly at first but within 2 months was back on 12hr shifts as a Production Manager.

    I haven't had 1 day off sick since and lead a relatively normal life and play golf regularly- it does age you though- people say i have aged and am definitely slower than i was, but after being given 3 months to live without a transplant im grateful for everything.

    Lot of meds to take initially but small price to pay.

    After the initial transplant you feel like you will never recover but you do and i was called a Moderate to High risk for the op due to previous medical history.

    Good luck to you and everyone going through this and remember your families are going through this too.

    Danny

  • Thanks for the response its nice knowing i am not alone in my feelings and I am pleased for the positive responses i am also aware life will never be same again for me, but to be able to go back to work and not to need so many naps in a day will be a blessing i also have an appreciation for the little things in life now. Am glad to hear your doing better since your transplant and i definitely notice effect it's having on my family and friends x

  • First consult with ur doc in brief about the consequences and ask for the option available...just see the outcome probability and take decision with ur family members or closed one without taking more time...believe me its all about to take the decision and believing in it. its only you who will help to come out of the situation apart from medications.

    You will be fine for sure..

    Live life.

    Sid

  • I was in a simalar position to be honest went for an assessment n told I was to well then a couple of months later my misses found me unconscious.i had liver failure when I was discharged they told me it's an urgency to get transplant done which happened in August I know that you said you'll be good in 18 months but that's more them hoping to be honest if you do get the chance of such a gift , take it there nothing to be scared of , I weighed up the pros n cons n was in no doubt that without the transplant I wouldn't be here today .i know your shitting bricks but hold on for the greater good n you'll be sweet , hope this helps .KEEP ON KEEPING ON

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