After some info

Hi there

I'm a newbie and posting to get some information in regards to my mother who has been ill for about 5 years and have recently been diagnosed with cirrhosis. They think it's due to an autoimmune disease but still not 100%. She has been in hospital For the last 9 weeks as she has developed ascites. She has lost a lot of weight and is just a bag of bones now. She has an enlarged spleen too. The last few days she has gone confused and drowsy. She has been like this a few times before on and off. But they say she has an infection somewhere and she's on antibiotics again. She's on high calorie drinks and a feeding tube as she doesn't eat very much at all. I have not seen no improvement in her weight gain at all. Sorry for the long story and babbling.

She is going to Birmingham hospital for an appointment in mid November. What happens here? Will she be put on the transplant list then or are there more tests before hand.

The doctors have said the only way for her to get better is to have a transplant.

Just after some information. Thank you in advance if anyone is to reply.

Sorry again for the babbling

19 Replies

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  • Hi i was in same boat over 3 years ago the weight loss is loss of muscle tissue but there is light i was told id need transplant but as im clean for 3 years now my liver is stable i have very little ascites but the spleen will always be a football if your mum can start eating proper food then she will improve we are on skakes for the rest of our lives but we still need proper food too i hope ur mum improves soon and comes home but if she hits that demon bottle again then theres no hope without a transplant but she has to be sober for 7 months before they will put her on the list hopefully she will be stable and not need one by then

  • Thanks for the reply. My mum doesn't drink. She has cirrhosis due to an autoimmune disease. She says she can't eat much due to feeling full. The last week though she eats next to nothing but is on high calorie shakes.

    Thanks again for replying and hope you continue to be stable and feel well.

    Just feel so useless as I'm sure many of you do too. She's only 50 .

  • Im 47 nobody guessed i was dtinking there are so many in denyal if it was drink the liver can fix itself whatever way the cirrosis gets you its a nasy disease

  • Hello there, thought I,d reply until someone with better information comes online, I don,t have any personal experience of auto immune liver disease but it is possible they may never discover the root cause. If mum is on anti.biotics and has ascites then the fluid may be the cause of the infection it,s one of the things they watch for. With regards to her weight loss, being in hospital can be a double edged sword. lack of exercise wont help, also diet . When I was in hospital I noticed the elderly lady opposite wasn,t eating much, it turned out that despite it being written on her notes they hadn,t realised she needed her food cut up for her, tops taken off yoghurt pots and such. Sad to say but often relatives or friends are key to keeping on top of situations if people are vulnerable. Mum will need help to ask the right questions and fight the battle. Don,t be afraid to speak out and if needed make a pest of yourself. no one will know more than you about if she,s confused for example. To help with muscle building any extra high protein foods (boiled eggs, hard cheese) mum can get down should help, every 2hrs if possible, but check with the nurses it,s o.k for her circumstances, anything you can take in and leave with her. Feeling sleepy is common with liver problems, as well as energy release our livers are responsible for 500 different jobs in the body. To be eligible for transplant again it,s a bit of a double edged sword, you need to be ill enough to need one but fit enough to take the operation. Your mum does have relative youth on her side which is a plus. With the confusion, try looking up H.E and see if that rings bells for you. (if you go to my charming purple face and click on to a post for information I made, there are some good replies explaining it in detail). Sorry, got a bit of a waffle on there, please keep posting there are a lot of helpful people here with good information. Wishing you well, take care of yourself. anne

  • Thanks very much for reply, have read on your page about the HE. Have read a lil about HE before

    Have mentioned to nurse that she's confused before but they say she's exhausted etc. Shall have to tell them again!! Just don't wanna sound like I'm telling them how to do their jobs.

    Does anyone know what happens at first appointment in Birmingham??? Mum doesn't know what is going to happen and she say docs in the hospital don't know either

    Thanks again

  • Hi Rosie, You know your mum so keep on. Having a tootle around for you. If you go to Katies original posts you may find some helpful information there. Same thing, click on the circle on any post with Ayrshire. (she,s often a voice of reason around here.) anne xP.S sky circle.

  • Hi Rosie89. I am 50 also and developed liver symptoms 2.5 years ago (not alchohol related). I also had developed ascites and this became infected and caused me to develop sepsis. I was in hospital being pumped full of antibiotics and fluids for 2 weeks. Anyway, is the hospital in Birmingham where the liver transplants are done? If so, they are possibly wanting to assess her for a transplant. I also lost huge amounts of weight but after being home for a few weeks and forcing down the disgusting high protein drinks 😱.. I started to eat whatever I fancied and it slowly turned around. I was seen in Edinburgh by the liver specialists and had a biopsy there. I am now kept quite steady with the right medication and regular monitoring. Hope for the best Rosie.. your mum definitely has age in her side (and a loving daughter). I wish you both well xx

  • Hi rosie, Hope you,re holding up o.k. Sorry I,m not much help on the transplant information front I,m out of my depth, but if you scroll down the page you will come across quite a few folk with experience. Sheri,s post " 6 Months On" and Jojokarak "at Last" are just two worth a read that can lead you to others. Also, found if you type in "Birmingham liver transplant" the page that pops up has a host of information on the hospital and further down information on a free course on the net all about transplants with futurelearn. I happen to know their courses are very good. Wishing you and Mum the best. anne. p.s. please keep us updated. Oh, just thought of something else another tip I,ve picked up from the others on this site, keep your own records and a note book with any questions you may think of (easy to forget in the heat of an appointment). xx

  • Thank you both for your helpful replies. You've all been great and caring support!

    It's great to know that people who you don't know give you such a warm and friendly welcome.

    Yes Birmingham is where they wish to do the transplant but the letter didn't explain much.

    How long roughly did you feel like you were gaining any weight.

    She eats very very little and it seems such a long way off. She's on ensure drinks of 2000 calories at a time but I've seen no improvement in her at all

    I will search for those posts now that you have recommended

    Diolch (Thank you in Welsh)

  • morning rodeo , Oops sorry I meant rosie!. Hope you are holding out there, at least you know now you,re not alone.. Rodeojoe, and chris are another couple of people who are much more clued up on transplants than I am. I,ll keep looking for you. annex.

  • Hi Rosie, hope you are well. I had a liver transplant, but it was at Kings College Hospital in London, so I don't know anything about Birmingham. I expect the process will be similar, and the transplant list is national and European.

    It doesn't sound like the appointment could be for a transplant assessment, for them to see if that would be suitable. You could ring the hospital (Birmingham) and ask to speak to a liver transplant coordinator, and ask them to explain more about what the appointment is for, and what to expect. All the transplant centres have coordinators and I have always found them extremely helpful.

    I was referred for an assessment by my gastro consultant at my local general hospital. I was admitted to Kings for the assessment, and stayed there for a week. They did various medical tests, ECG, lung function, bloods, muscle strength, ultrasound, CT, X-ray, and some I've probably forgotten now. I was seen by a transplant surgeon, hepatologist, anaesthetist, social worker, and transplant coordinator. They want to make sure you are strong / well enough to survive the surgery, and that a transplant is necessary, and likely to work for you.

    After I had the tests they said I was suitable and I was invited to attend an education day where they explained the transplant procedures in great detail, along with advice on staying well while on the waiting list. I then completed the consent form with one of the surgeons. They then put me on the transplant waiting list. They booked regular outpatient appointments, and I had a blood test every month locally, and had to provide my weight. I was on the list for nearly a year before I had the transplant. It is prioritised based on need, and obviously the availability of a suitable liver matched to your blood group and size.

    Please come back to me if you have any questions I might be able to help with.

    Best wishes, Chris.

  • Thank you for your replies. It really is lovely to know that you can come here and get such warning messages and helpful information

    My 2 little girls (2 and 4 months) are keeping me busy

    Thank you Anne you've been very helpful in pointing me in direction of people to help with some information

    Hi Chris, hope your feeling well and are getting your life back.

    Wow thanks for all that helpful information on your journey of having a transplant

    The letter she had stated it as an outpatient appointment so would that mean she will not have these assessment tests??

    Also sorry to ask you don't have o tell me but how bad were you before you had assessments? As my mum is a bag of bones (48kg) slight confused at times, ascites (had nearly 3 litres drained on Monday) etc will she be fit enough to go to her appointment and assessed even though the hospital she is in at the moment are trying to build her up.

    That's all the questions I can think of at the moment as smallest one wants a feed.

    Thanks so much

    Rosanne

  • Hi Rosie, you're very welcome. An outpatient appointment would not be a transplant assessment but it would be worth discussing it there. I will send you message in a bit.

    All the best, Chris

  • Hi Rosie, I think someone mentioned myself in one of their replies to your post. My hubby has cirrhosis due to auto-immune hepatitis (burned out) which only came to light after a massive upper GI bleed requiring emergency admission to local hospital. For over a year he was being seen local to home by a gastroenterologist who acknowledged his liver knowledge was rather limited and after the year he decided that it would be best for hubby to 'touch base' with the transplant unit (in our case it was Edinburgh).

    We went through there in June 2013 and the first outpatient appointment was with one of the consultants on the liver transplant team - we had a whole list of hubbies symptoms jotted down together with all the questions we wanted to ask and our first appointment was quite lengthy as the doctor went through hubbies history, listened to our descriptions of day to day symptoms and answered our raft of questions. Because she deemed hubby to be 'malnurished' she also got us to see a liver specialist dietician there and then in clinic and she did a full 'work up' of hubbies condition and sorted out an eating plan for us. Extensive bloods were taken and the doctor basically took over hubbies case from local consultant - taking on his banding regime and dealing with medications which he wasn't already on and such like.

    Hubbies symptoms are fairly minimal compared to your mums so he was just monitored by Edinburgh for another year and was attending clinic and endoscopies over there very regularly. In June 2014 he was assessed and listed for transplant but in May 2015 was actually delisted because his condition had improved and so he no longer (currently fits the criteria for transplant). Hubby remains under the care of Edinburgh even though he is off the list and still also sees local consultant for local monitoring.

    I would imagine this first appointment at Birmingham which is scheduled will be something like our first at Edinburgh and from their the doctors and transplant team will decide what they plan to do next whether that be taking over mums care, doing further tests and treatments or indeed making arrangements for her to be admitted for assessment - though Birmingham do seem to do things a bit different than other centres.

    It does sound like Mum requires a transplant so they will need to work out how poorly she is - getting the balance of poorly enough for transplant and healthy enough to undergo the major operation that it is and that is the purpose of the whole transplant assessment process.

    This out patient appointment is the first step. Go forearmed with the questions you want to ask, details of mum's condition as you both see it and also details of any medications she is already on.

    Wishing you both all the very, very best.

    Katie xx

  • Hi Rosie,

    I had my assessment on Monday and Tuesday, I have liver Cirrhosis and Portal vein thrombosis along with blood cancer and its the blood cancer that has caused my problems. Obviously when I was preparing to go for my assessment I didn't do any research on the internet.....(clearly I did, I think I spent two days flat trying to find out everything I could) So what did I come across? uhb.nhs.uk/Downloads/pdf/Pi...

    The link attached really helped calm me....its actually from Birmingham hospital, although I was assessed at Kings in London.

    I know your going through a really scary time right now but rest assured your mum is in the right place and they will do everything they can to get her well and out the other end.

    If you have any questions at all please don't hesitate to contact me.

    Chelle xx

  • Hey both

    Sorry for late reply, been busy with my 2 monkeys

    Thanks for replies

    Chelle the link u gave me really helped and has answered a few of my questions and hope that you have your transplant very soon!

    Katie I will go to mums doctor with an armful of questions and I hope your husband continues to improve

    Mums very weak and I'm not sure if she'll be able to go on the journey to Birmingham but fingers crossed she gain a little weight which isn't from her stomach (ascites) and be strong enough to attend the appointment

    Thanks everyone so much for all your support and help

    Much appreciated!

  • Just a little update on my mum

    She had the outpatient appointment on Monday 7th and the doctor wanted to keep her in there and then as she is very bad. But she wanted to come back and see me and my brothers before she went back. So today she has gone back to Birmingham as they want to feed her up as even though she'll be on the emergency list, she's too weak to go through the procedure. So she has gone to Birmingham to be fed up.

    She's likely to be there over Christmas too and not sure when she is likely to be fit enough for the transplant

    Quite overwhelming that she is even further away from me now but I know that it's for the best. Will just be a little harder to see her with my 2 little ones. Also now it seems 'real' if you get me.

    Thanks for all the support and personal stories that you have given me.

    Fingers crossed that mum will put on weight and be strong enough to have this special present

    All the best to everyone else

    Thanks

    Rosanne

  • Fingers crossed that the feeding works and your mum gains sufficient weight to go forward for transplant. Hopefully she'll have many more Christmas's to spend with you and your little ones, for the moment she's in the very best place possible and the only place where she'll get the care needed to get her fit enough for that transplant.

    Lots of love to you all and thoughts with you all and your mum going forward.

    Katie xxx

  • Thank you 😊 x

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