iv recently been put on the list,so forgive me if i sound a bit un imformed.

[paulivicky]

as i said on the above iv just been put on the transplant list,and to be honest my head is a jumble of imformation that so mixed up at the moment,i know i have asitees,enlargedportal vain from my spleen, and other things my lovely wife does everything for me besides working full time,ive had to give up work because i have such a physical job and am strugling to maintain weight,and wondererd if there were any other people in the same siyuation perhaps many thanks ,pauli

[Bolly]

Hi Paul and positive to hear you're on the transplant list. I assume that means you have been through the lengthy assessment process and are now waiting for a suitable liver?

Your confusion is probably part of your liver disease. Patients with decompensated cirrhosis, which it sounds as though you have, do suffer from symptoms of fuzzy thinking and confusion on top of the fatigue. Hopefully your wife has sat in on meetings with you and has taken in the implications of your advanced liver disease and the implications of a transplant.

Are there any questions you (or she) want to ask?

[paulivicky in reply to Bolly]

thankyou so much for your speedy reply,yes yes yes and yes again to all your answers,im so lucky to say my wife is with me on every hospital visit and appointments,and if im honest i think she is more aware of the transplant procedures than myself,im realy strugling with maintaining some weight,i eat incredible amounts of all the high protein foods and supplements but just keep loosing weight?

[paulivicky in reply to Bolly]

hi bolly came out ov hosp 2wks ago,liver doing realy well so far ,thought id let u know,coz im still trying to come to terms with everything that has happened in the last month,its incredible just how quick everything has gone,realy hope things are going ok for you,paul

[Bolly in reply to paulivicky]

Hi Paul. What fantastic news. Great to hear you have had a successful transplant and things are looking good. Took a while to find your post (above) as it's hidden in the middle of this thread! By the way, Nomads has moved server so if you want to let peeps on their know your good news you just have to register again before posting.

[paulivicky in reply to Bolly]

thanks bolly woz wondering what was going on,take care fella

[Bolly]

A year ago, in March 2012, the number of patients on the active liver transplant list was 553 - so yes there are a lot of other people in the same situation as you.

Last year the numbers waiting went up by 8% from 2011 (possibly due to an increase in alcoholic liver disease, I dont have those exact figures). Between 2011 and 2012 one thousand one hundred and five (1,105) patients joined the liver transplant list, so figures show that not everyone on the list will receive a donor organ.

I suspect the number of patients waiting in March 2013 will be up again.

[Bolly]

One of your liver’s most important functions is to break down food and convert it into energy when you need it. Carbohydrates such as bread and potatoes are broken down to glucose and stored mainly in the liver and muscles as glycogen. When your liver is as damaged as yours sounds, it cant do this any more.

There are some good tips from a forum member called Bigplanet who has decompensated cirrhosis also and a background in catering/nutrition.

see here britishlivertrust.healthunl...

Have a read of his posts, it might help.

[paulivicky in reply to Bolly]

many many thanks bolly will check these out,hopefully chat again soon

[Bigplanet]

paulivicky

Good news added from me as well. Confusion is deffo one sign, one we all get. If I did t have my iPad with lists, to dos and other stuff, oh my partner I grind to a halt.

Good timing, I just had one on my regular Dr appointments and diet and weight came up. I to have trouble with keeping weight on although I eat for England. I kept a food diary for a week, average on days was 2500, some bad days down to 1500, high protein, carbs and high fat products. But I am still the same weight I was on discharge. 11st 2lb, went down to 10st 9lb last week, weigh yourself every day if your not already. Going for additional tests for thyroid.

Now as for advice, well as I am not gaining not sure I can add advice. But I am making all my own food from fresh, ensure high protein content and fresh ingredients. Use pasta type foods and a good whole meal bread, but if you are struggling with starch group of foods might not be worthwhile. Dr says use butter, full fat milk cream on desserts but I am a bit careful on this as digestion is also one of my of problems and would upset this condition too.

I eat about 8 times day, sometime small snacks items, with more substantial hot food at standard times if you feel like it. Recently spent 4days at parents and told mum my routine, "I eat when I want, how much I can handle and how often. " also I handle foods that are now stew based or high gravy/sauce content. Dry food seems difficult to swallow and digest and less sppertising. I also have strange ad hoc cravings for specific foods. PS home made soups are a must.

I do take Vit supplements, but are careful as you can overload, Dr suggested protein supplements but I want to stay clear of this if I can.

Well email is [e-mail] is you want direct convo or on here if wanted.

Good luck and well down for getting on the list.

[paulivicky in reply to Bigplanet]

iv just writen a lengthy reply andy and hit the wrong key,its disapeared,yes im having al manl the same problems as it would seem urself,meal after meal and ive still droped 4kilos in a week im down to 70kilos now,everything i eat is fresh or home made,dnt take this the wrongway bur its so good to be able to talk to some one who is having the same sort of difficaulties as myself,my head is such a mess at the moment with so uch going on and somtimes its so hard to stop the red mist from coming down in frustration,with people and espealy wiv myself, iv been selfemployed most ov my life and my wife works and to be told u cnt have any help from this wonderful goverment,not even with prescription charges ,i hope your having a good day fella you can always email me on [e-mail]

[Bigplanet]

Just replied via email to Paul. Just incase guys you think I have not replies.

[bulmer5]

hi paulivicky,may i ask how long was it before you got on the transplant list?

[paulivicky in reply to bulmer5]

hi bulmer i wasnt being rude been at hosp most ov day,once i saw the 2nd consultant it woz less than 6mths i think,but had problems for a long time,jimmys hospital leeds fantastic amazing i cnt say enough good things about them.

[Hidden]

Hi - pleased to hear your on the list - that's a positive xxxx forgive me for asking but how long have you been unwell and how long did it take for you to get on list ???? You should be entitled to disabled living allowance - despite wife's income - as I work and my husband is bedridden with his HCV and cirrhosis - he also has developed insulin dependent diabetes - has just had 6 varices banded - is enephalopathic - enlarged spleen and inflamed gallbladder - he is 46 and is not listed yet !!!!! Just wondered how long the wait was xxxxxxxx

[paulivicky in reply to Hidden]

hi there robswife im so sorry to hear he is having such a bad time,iv had a problem for over 20 yrs,but only the last 6 where i realised there woz a serouse problem,but 3yrs ago i had treatment at a local hospital,which speeded everything up and made me 10 times worse,lowered my platlets to 9 at one point,imune system to nothing etc etc,and then by accident,i got a referal from a polish doctor in bridlington,(god bless him)saw a consultant in leeds nov dec time,got an appointment feb i think and woz put on the list sorry about exact dates memory is shocking,iv also an enlarged spleen and portal vein just had endoscopy today and have 3 varasies veins or something wife could tell you more xxx

[papataal]

Paulvicky, So glad you are on the list! I had a transplant in 2009, and I know what you are going thru, my wife managed everything from making sure I did not do silly things(confusion etc) to managing my meds, as well as running the business, kids and relocating to a different country!!! You are lucky as I was to have someone in your corner!! I was on the list for about a year, can tell you every phone call that comes you run for! My wife made sure I stayed as healthly as possible so that if I did get a call I would be physically fit for the Op! The confusion you are feeling I called it the "fog" was very weird for me! But believe when you have the transplant(always think positive) that fog just vanish's. I hope you get one soon and just keep going! Best of Luck.

[paulivicky in reply to papataal]

hi there and thankyou for your imput,an im so very very pleased for you and your family,iv already had so many helpfful replys from people,but nobody who has actualy had a transplant,iv so many worries ie transplant,because my liver problem has been with me so many years but only the last 6 or so,but mainly the last 3yrs,and have led such a full and active life,to be reduced and told i cnt do this or do that,and worry will iever get back to how i woz?

[papataal in reply to paulivicky]

Hey, It is such an indivdual thing, since my transplant I have had issues trying to get back to a normal life, but funnily none of them have had anything to do with the liver!! the liver has been working fine. The fact that it seems you led a active life may come back and actually help you!!! I unfortunatly was all work and bad habits before my liver disease got a hold of me and that is what is catching up with me. The good news is that I'm starting to get more active then I have ever been. The point here is, if the Liver transplant is a true success and you have no other health issues, you can hopefully make a fullfilling life.

I will always be grateful to the the family and person who made the donation, and in my mind I owe it to them to make sure I live my life to the fullest.

I hope for the best for you!!!

[98percentoriginal]

I posted a blog about my liver disease and subsequent transplant on 25.08.12, it's still there if you want to look back at it.

I had a transplant in September 2010 after 10 months on the waiting list. I had all the problems you describe, including the weight loss even though I was eating far more than usual. My GP prescribed Fortisip Extra supplements which really helped, your GP may do the same for you, the 'Extra' have higher protein levels, than standard Fortisips. I'd ask for the larger bottle as the concentrated Fortisip doesn't taste great. You'll probably end up scrutinizing the list of ingredients on anything you eat, I didn't get on with fatty foods as they just went straight through me, and you need to basically cut salt out of your diet altogether to help with the Ascites. It's surprising how quickly you get used to it, the first thing I was given to eat after my transplant was a slice of toast with normal salted butter, I couldn't eat it as it tasted too salty after a year of trying not to eat anything containing salt.

Try to keep your life as normal as possible and keep yourself as busy as you can, it might seem like a long wait for a transplant to become available and it doesn't go any quicker if you are just waiting for the call.

Weigh yourself at the same time every day, it will help you track your weight, and also keep a track of your Ascites. It can be deceptive though, for a while, my weight remained constant, up to the point where I had an Ascitic drain, and had 10 litres removed which had a pretty obvious effect on my weight the next morning.

I carried on working up to the day I was called by Addenbrooke's, although I had to make a lot of changes, and gradually reduced my hours until I was actually going into work just for two or three hours a day, I also walked my dog as much as possible, although I did get help with this as well. The fitter you can keep yourself over the next few months, the quicker your recovery will be after the transplant. Believe me, you'll be surprised just how quick you recover after the operation, my symptoms had disappeared within a day or so of leaving the ITU, I was on my way home just two weeks after the operation, and walking the dog the next day.

It takes a while to build up your fitness after the operation, remember that you've been losing muscle bulk and ligaments and tendons have got a bit weaker, but there's no reason why you shouldn't be able to get back to a near normal life again. Just do everything slowly, and put weight back on gradually and in the right places.

The medicinal regime after transplant is pretty straightforward, and there are far less tablets to take than you might imagine. Unlike most of my friends and family, I haven't had a single cough, cold or other illness since the transplant, partly thanks to the annual flu jabs, and if you take some precautions and look after yourself, you may find yourself healthier than you have been in years. The only side effect to my meds that I've noticed, is a slight blurring of my vision when I exercise, and very, very vivid dreams throughout the night, which is a pretty small price to pay really.

Good luck.

[paulivicky in reply to 98percentoriginal]

Thats amazing and thankyou so much as you are an inspiratoin,uv most probably read what iv put already,so i wont bore you with it again,my main problems at the moment are the asites,i hvnt had to be drained yet,and woz managing it quite well spirolacttone 3x aday,just latley they dont seem to be working aswel latley,labido,and the feeling ov clumsiness and memory,i realy want to go back to work but dont know if i can cope well enough,also wife just goes ballistic every time i broach the subject,i woz always brought up 2 believe the man woz the bread winner,but your recovery time is just incredible,thankyou so much for your reply somtimes you feel as you are the only person in the world who feels like we do,thankyou again

[98percentoriginal in reply to paulivicky]

I'm not sure how effective I was at work over those months, but to be honest, it was more for my own benefit than anyone else's or my employer's. I just wanted to keep things as normal as I could and do things to pass the time and take my mind off being ill, and the open ended nature of being on the transplant list. It can be a long wait, and when the call does come, it comes out of the blue, but I think I would have found it a lot harder to wait all that time, if I'd just been at home. Do let others help you as well though, I think I was a bit too stubborn at times and forgot that I needed some help, and that others close to you need to be able to help too.

I went back to work about three months after the transplant, part time at first, building up to full time over the following six weeks or so, although in hindsight, waiting another month might have been a better idea.

Take care and look after yourself

[paulivicky in reply to 98percentoriginal]

thankyou again for your advice again, im aplasterer/render and cannot ddo my job properly and do not want to tarnish my rep anymore,but my main isue at the moment is my temper espealy wiv my poor wife,and failure to except help from loved ones staywell .

[paulivicky in reply to 98percentoriginal]

hi 98%er had my transplant on 24/6/13 a month ago,have been home 2wks today,and cnt believe just how great i feel,had afew probs with chest infections apart from that all is bloody great,anti rejection drugs are a bit up an down but hey ho u cnt have everything in life can you,cnt believe when i came round in hdu my symptions had gone,no itching, no coldness,all gone ,amazing

[Tracy0512]

Hi my boyfriend had transplant few weeks ago. Before that he had problems maintaining weight etc although when told he needed to up his calories he was quite pleased that he could have cakes, full fat coke and lots of pick and mix he used to mix his full fat milk with four spoonfuls of the powered milk for his protein etc. his body didn't retain fats and vitamins so had to have vit a, d and k supplements. Since transplant doctors have given him the fort sip extras and as someone before said. They aren't the best tasting but do the job. I can understand what you mean about not wanting to accept help from please and getting frustrated at not being able to do things for yourself. I can only comment from the other side. Being independent myself I prefer to do things myself and rarely ask for help much to frustration of my boyfriend. However with the damage to his liver although he worked full time. He could come home at 5 , eat and then sleep only waking when his alarm went off for nightly drugs. Walking round shops etc for even a short time was exhausting. I am lucky enough to be fit and healthy and I had no problems doing stuff for him cos it needed doing, washing up, putting a load of washing on , hoovering , feeding cats when he was to exhausted to even open his eyes. He would get short tempered and snap out of frustration . I learnt not to take it personally and despite his protests to leave things alone I just carried on doing what I could to help. Not cos I had to but simply because I was able to which then enabled us to have a little quality time together being it watching a film or going for something to eat. Yes I will be honest sometimes it was a little frustrating that he fell asleep so early or couldn't walk dot far without getting tired. If I said it didn't I wouldn't be human. But the point I am getting to is as frustrating as it is for you to sit back and let your wife help you, she is doing it cos 1. She loves you 2. She understands the reasons why you can't do things and 3 because she is able to. My other half is an ace cook whereas I burn water. So he used to do the cooking and that made him feel a little less useless ( not that he was useless) but you get the drift. It s give and take. Fond something that you can do for your wife. Doesn't have to be anything major just to show you care. I know it must be really hard to accept help but you have to bite your tongue and swallow your pride. Because when get your transplant you won't have any choice to accept help. Then when you are fighting fit you can treat your wife. Just answer this . If the roles were reversed and it was your wife in your position, wouldn't you want to do everything you could to help and support her.? Sorry to ramble but my boyfriend and I have had many discussions about help. He helped me out with things that I couldn't do but he could. It was hard to accept the help cos I felt like a failure but sometimes you have no choice. I hope you get your transplant soon xxxxx

[Tracy0512]

Sorry about obviously spelling mistakes its early in the morning and my ipad had a mind of its own xxxxx

[paulivicky in reply to Tracy0512]

thankyou so much tracy for your kind words and i realy hope your boyfriend is on the mend,and putting some weight on,my wife is an absolute angel il nevver know how she puts up with me coz i couldnt,the 2 main things im struggling with at the moment is the itching an fluid retentoin,the main thing is to stay positive ,thankyou again tracy sorry im struggling this mornin.

[Tracy0512]

thanks. my other half was out of hospital in six days and is doing really well at the moment. he had itching and was on a drug i cant remember the name but that didnt work . then went on to Chlorphenamine and that seemed to work really well. He didnt have fluid retention so cant comment. Vicky puts up with you as you put it cos she loves you and wants to help. I m sorry to hear that you are not having a good morning. I really hope it gets better xxx

[Tracy0512]

How are you x

[paulivicky in reply to Tracy0512]

not to bad thankyou,iv found the only thing that seems to help my itsching is to stay as cool as possible,no heating on and a very large fan going constantly ,drives my wife insane bless her,as for the fluid i drink lots ov blackcurrant and nettle tea and spirolactone,but dont want it to get drained as iv been told i will have to have it done every month if i do that,the main thing iv found is to stay possitive and have goals,we want to renew our wedding vows on abeach in bali coz its my wifes 30th as well,and i make 90% of our food myself which helps, thankyou for your wwishes and hope your chap makes a full recovery and you both keep well.

[Bolly in reply to paulivicky]

Hi paulivicky. Bali sounds lovely and so romantic. Are you allowed to go abroad once on the transplant list? I thought you had to stay within 2hours of the liver transplant unit in case you get 'the call'. An organ is no use to you if you are a 15 hour flight away!

[paulivicky in reply to Bolly]

sori bolly must ovsaid it back to front as always,our goal once ive had the transplant is to go to bali i do apolagise.

[Bolly in reply to paulivicky]

HI paul - hope she wont be older than 30 by the time you get to go! Are you being cared for by the team at Jimmy's Leeds? Presume that's the closest to you?

Did they give you an 'average' wait time on the list. I know Tracy's b/f was unusually lucky to have his transplant so quick, I think you move up the list according to need, as much as anything, but no doubt this was all explained to you by the team.

Re berties post below: oh if only it was as easy as a pear a day and some Twining tea, now wouldn't that be dandy!

[paulivicky in reply to Bolly]

hi bolly i hope she wont either,they said there were about 30 people b4 me,my blood counts are realy down as usaul my doc phoned at 10pm other night to see if i woz ok,coz bloods were down,got retested and now lower,its my platlets all due to barnsley hosp giving me interferon ribaviron etc,there only about 30 now,but iv lived with this hapening for last 3yrs so i dnt expect miracles just get on with it,the teas i think are doing me good but you never kno so just keep pluging away at it,i realy realy try not to think about the list,but jimmys are fantastic cnt fault em,keep well bud and stay in touch.

[Bolly in reply to paulivicky]

With platelets at 30 you need to be careful you don't cut yourself, or injure yourself in any way or you will bleed.

How long ago did you come off the interferon and ribavirin and was it for HCV treatment? With cirrhosis the max time you would have been on treatment is 48weeks, so I assume you have been off the meds for at least a couple of years if you were treated 3 years ago? It's quite common for platelet levels to drop on treatment as an effect of the meds. Usually when they start to drop an 'on the ball'' medic will reduce the Ribavirin until they stabilise again. However if they continue to fall, especially as low as 30, you would be taken off treatment.

If you have been off the interferon and riba for a while your platelet levels should recover, and your current low levels will be due to something else, probably the enlarged spleen.

[paulivicky in reply to Bolly]

ay up bolly,im pretty certain it woz 2010 i had the treatment and i woz on it for 6mths,my platlets believe it or not went as low as 11 and the one that stops you from getting infections,but like i said before igot used to all those things coz i thought it woz the norm,i only stopped workin this xmass coz i got pnumonia,and woz realy struggling.

[Bolly in reply to paulivicky]

okay so a 24 week treatment of interferon and ribavirin? That's standard for a Geno 1 without cirrhosis treating for the first time. If your platelets went below 30 on treatment they should have tried reducing your Riba to see if that helped, or if not,taken you off treatment as it gets too risky to continue with very low platelets. I'm assuming then that they didn't try the Riba reduction but took you off treatment, so you didn't SVR and you still have active HCV?

No its NOT the norm to have platelets that low from HCV treatment if you have been off the meds for nearly 3 years. The levels normally recover once you stop the meds. With the liver damage you have and the enlarged spleen it wouldn't be unusual to have low platelets, but I'm talking about somewhere in the low 100's (bottom end of normal is about 150) not as low as 30.

Has this level been up for discussion when talking about transplant. I doubt they would operate without a transfusion at this level, as the risk of internal bleeding is high with them this low. You must be careful shaving and avoid bumps and bangs if they are still very low. I guess you bruise easily.

If you still have active HCV then the transplant team/your liver specialist should be also talking to your about the active HCV and options after transplant. Its in your blood as well as your liver, and a transplant doesn't remove the virus. That issue has to be addressed after transplant. I think pear-shaped has addressed this in her posts as her husband is HCV and is discussing transplant/treatment options with medics.

[paulivicky in reply to Bolly]

thanks for those threads,woz at docs this morn and platlets are 34,and a couple of others are down,bleeding has always been a problem and bruising,barnsley never realy botherer about much if im honest,but my speacalist at jimmys said right from the word go that the low platletes wasnt a problem,they toldd me the chances are i will still have the hcv,but they will deal with it when i had the transplant,i will checkout pearshapd thrads but thanks again

[berties]

Hi Paul, Vicky and Tracy,

Just reading this thread. I hope you are feeling better Paul. I am in much the same situation as Tracy, I am a wife with a husband who had NASH. He was diagnosed 5 years ago but managed to stay reasonably well with a pear a day and Twinnings Cleansing Tea (contains Milk Thistle, Nettle and Mint) but the magic ingredient for him was golden linseeds. They kept him regular which is half the battle.

He was not ill enough for the transplant list.

That changed at the beginning of this year. He was so ill in ICU for 6 weeks. Had to have a TIPPS stent which caused the ammonia levels to build up in his blood. He developed brain toxins and went very strange. Thats when they put him on the transplant list.

We were trying to get to grips with all the information they gave us for transplant preparation when we got the call (3 weeks later). It was all a bit of a rush but all went really well. Now 2 months later they are reducing his tablets already. He still feels fragile (not surprising) and very emotional.

Yep he has lost a lot of weight but is eating little and often too. Drinking plenty of water and walking. I still have to do a lot for him but each day is better than the previous day. I do it because, as Tracy says, he would do the same for me if our roles were reversed. Some of the tablets still give him tremors but that too will go eventually. He has already been taken off some of the tablets.

It is nothing short of a miracle how quickly the new liver affects you. His eyes were bright and he had a pink flush within 24 hours of surgery. They had him up and walking withing 48 hours!

Please stay positive and do everything you can to support your liver. You need to look after each other any way you can until you get the call.

My husband has already gone to bed as he still gets tired. I just wanted to share our experience with you because positive thinking is half the battle.

Good luck to you both and I hope to read that you got the call too.

[paulivicky]

hi berties so sorry to hear your husband had such a rough time,but thankfully hes come through the other side and is making a realy good recovery now and will go on to have afulland active future,all my symtons i kept putting down to the origanal treatment id had with interferon etc,but have since found out that is not the case hence being on the list,but i agree whole heeartedly some of the teas are very benefical and surprisingly tasty,and i will checkout the golden linseeds,but i also make 99%of the food now myself which i think helps,please please stay wellthe pair ov you and keep us up to date on your progres,paul.