Hi all

My pbc is gradually worsening and my bilirubin has risen and albumen dropped a bit but i am suffering really badly with trying to keep warm...i havd the heating way up and have to usefleeces to get /keep warm.has anyone else got a similar prob and does anyone know if its a symptom which gets worse as the disease gets worse.i am end stage and borderline txp asessment.cheers cazer.

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  • Hi camera before my transplant I was constantly cold it become that bad it was a running joke with my friends, even in summer I was living in my winter coat and other does tie in with you saying your end stage...

    Am sorry I can't be any more helpful but it's just another effect with have to cope with. hope you get your gift soon x

  • I did put cazer bloody spell check x

  • I cant spell anymore im on phone pad and its small but im even worse with predictive!!

    Thanks for reply...just made me think i was a bit doolally...i go on 21st fo next check up 3monthly....not yet made it onto to list..

    Consult says im nearing asessment dont know if coldness will have any bearing.were you on the list when you got was bad last winter but im going to end up completely housebound !!

    Cheers cazer(camera) ha ha

  • I wasn't on list when I started getting colder actually I had to grindstone and bear for about 18 months bleurghhhh!! thing is they don't really assess you on symptoms it's always blood's, I was in hospital every week for about 5 months getting drained I thought that would of pushed them but it didn't it is frustrating when you feel like things are getting worse but your bloody blood's could be fine!!

    My best friends were hot water bottles If I had to go out I would have one with me haha also microwave heating pads and about 5 pairs of socks and thermals some reason if my feet and hands were warm I could cope better... also plenty of hot fluids be it tea, herbal or normal, coffee cup of soups. which hospital would you be referred to for your transplant assessment?

  • I go to qe have been going 17 yrs..

    Yes i know what you mean it doesnt matter what you feel like just the ukeld is 51 but bili is31which o gather is no where near high enough...albumin 28 thats the only one they seem to take notice of.

    Hows your txp if u dont mind me asking...take it you are still nocturnel !!! will get some more socks and gloves !!!! thanks for help.x

  • Sorry I couldn't be more helpful. your defo under the best transplant hospital as my consultant regretted not referring me to qe.

    Txp is amazing as soon as I woke up from anaesthetic I felt great. strange thing is I got so used to being cold that I am currently trying to adjust to body having a thermostat what works now lol I was sweating for first 2 weeks. sleep patterns still up the wall and I still tired easily but need to build strength and stamina up slowly.

  • No you have been it long since txp..

    I am champing at the bit as after feeling ill for 17 yrs i just want to get on with.i know theres not enough organs and qe is good but i was only 36 when first ill so it feels like a huge chunk of my life has disappeared to pbc .

    Try not to moan but sometimes gets the better of me !!!! cazer.

  • God I can understand completely. I was 34 so no way suffered as long as you but I think different conditions make it progress quicker or slower but the frustration I get you I got gradually worse over 5 years. I had txp a month ago yesterday x I was put on list in February of this year x

  • Wow you are doing well to be up and about and so with it after such a short time...congravts to

  • Thanks hunni let me know how you get on xx

  • Thanks i will.cheers cazer

  • Hi, I asked my husband's liver doctor about his being cold - since he used to like being cool, and I liked it warmer, now it is reversed. He laughed and said that is one of the questions he gets a lot from older women about their husbands and suggested I will need to get used to it. He said part of the problem is that with a bad liver the muscle and fat just melt off and liver disease caused you to be cold.

    Wishing you all the best and hopefully it will ease up a bit.

  • Cazer, you really have my sympathies. It takes me hours to get warm and then the front door gets opened, sucks the heat out and I have to start from scratch again. I,m sitting here in a woolly hat, that seems to help if you,ve not tried it yet. (longjohns!). anne x x

  • I tried a dry towel heated in the tumble dryer then wrapped round my was lovely but didnt last long.!!cazer.

  • The best way I have heard the coldness issue explained is this. Your liver is like your furnace/ boiler in your central heating system . When it is not working to its full capacity all the radiators in your house won't be as warm . Your blood supply goes through your liver , your liver provides about 20% of your heat source to your blood . So therefore you can expect to feel colder. Even little flexes of muscle will provide some heat so even if its just jiggling a leg , it will help a little. The worst bing is to try and stay immobile , you just feel colder. We shiver for a purpose , it generates heat when we feel cold.

  • Yes definitely a symptom. I remember wearing a hoodie and coat in the middle of the summer.

  • Hi Cazer, I used to feel cold as well. I remember the house used to boiling hot according to my husband but for me it was still cold.

    Hopefully you go on the list soon and get you gift.

    In the mean time get yourself some nice fleecey night gowns and cover yourself up.

  • Thanks at least i know its a common problem.cazer

  • I have been very cold as my blood not clotting so very thin. Have you had yours checked recently.

  • Yeah it was okay unless its changed in last fee weeks

    Cheers cazer.

  • Cazer, sorry ๐Ÿ˜ž I was constantly cold before my transplant. Even in warm weather i was wearing jumpers cardigans etc. I've heard it many times now off other people in clinic saying how cold they were and some of us still are. I'm so cold too. Dressing gown jumper the lot last night and 2 duvets. My albumin has dropped also in 2 weeks from 26 to 20. Not sure what the normal range is i just know they stressed in my letter " her albumin continues to fall, we will keep a very close eye on this". My bili has gone from 38 to 23. Like i said I'm freezing. Coincidence with the bloods? Like i said though since my transplant it feels like my thermostat has broken. Hope you feel warmer n better soon. Good luck ๐Ÿ€ with everything. When i went to type your name it came up Fazer. Your gonna have so many names soon ๐Ÿ˜‚.

  • Hi well I am very cold during day and evening and then over hot at night..mostly middle of night..I am way over menopause so not sure what is happening! Re Liver transplant, I am not on list yet and I am 66 so it it seems that I never will be on it due to age.....Just got to get on with every day instead and compared to many of you I got chirossis late..23 years after pbc diagnosed .so I am lucky I suppose...good luck all.

  • Thanks....youve got 4 yrs isnt it 70...???

    Might be wrong but depends how poorly you wishes cazer.x

  • Hi cazer , that's a great post ! And one I was going to ask myself . I too suffer with the cold . The other night I had socks , slippers , the long bootee type , fleece onesie , pyjamas , dressing gown and a hoody !! Heating on , electric basket (( bliss )) as I was so so cold , I worry about my heating bill ๐Ÿ™ I did not know this was due to the liver ! So thank you for brining this up Hun , glad I'm not on my own , yes Sheri was cold too that evenings too bless her . I am not on any transplant list , have no idea what condition my liver is in as I'm trying to get my dr to refer me to have regular check ups . So annoyed to the fact I'm thinking of going private now . Best wishes .. Linda X oh when I typed your name I it said cases ๐Ÿ˜‚๐Ÿ˜‚. Bless X

  • Hi there thanks millie.

    Its wierd isnt ive never seen mention of it before even though i been on the websites quite a lot and diag 17 years.also have read numerous copies of pbc mag.

    At least we know we are not going mad..i was being to wonder what the heck was happening.

    Try the dry towel heated in tumbler its lovely....short but a few seconds of bliss.

    My son has taken to wearing shorts poor love!!! and my long suffering just puts up with it most of time

    Also find the achy /fidgety legs worse if im cold.

    Best wishes...

    Cazer fazer cases etc etc

    Mad cat woman is my other name

  • omg were all known as crazy cat ladies now. There's a few of us ๐Ÿ˜‚

  • Crazy cat ladys cat tyson will sit on my shoulders and is a good neck warmer.xx

  • I've got 2 rescues ones brain damaged he is like a baby but so cute. That's Ollie. Lola -Twix is getting on now she's a chunky cat who likes to eat n sleep ๐Ÿ’ค occasionally she will chase her own shadow ๐Ÿ˜‚ but a bit too much effort for her. My other Rocky was abandoned 3 yrs ago by people round the corner who did a bunk and dumped him. I hate people at times. The only trouble with Rocky is he attacks dogs and i have a rescue dog. It's hard work at times. All my cats sleep with me Ollie is on the pillow next to me his spot. Crazy cat ladies rule 100% xx๐Ÿ˜ป

  • We have a brother and sister which we has as kittens from a local farm..they fight but then cuddle up togeather.they love to come and lie on my bed am and eve they do go in utility at night but mainly cause they would bounce around all night as they are only 5 so still quite lively!!!

    We had a lovely rescue who had to be put to sleep when he got ill he was 17/18...we think ge had been hit and headbutted as he was scared to death of touching faces and if you put your arms out towards in the early days he would visibly flinch abd run took me 3 weeks of patience to get him to come out of a box we gave him to hide in you say how can people be so

  • awww bless. That's awful. Ollie had had his tail broken and been swung and hit his head on the wall or floor causing the damage. He was 7weeks old. Rocky stays in my utility room as he's used to being outdoors. Lola doesn't go out anymore and if Ollie hears a car he lies flat in the middle of the road. He will venture in the back garden in summer under supervision. Rocky comes and goes as he pleases. He likes to be out at night i like him in. Typical tom. He comes back in around 4:30am. I've waited up before now even though he gets in and out by himself. People who hurt animals have no place in this world. I detest it with a passion. Xxx

  • They sound brill nutty biy brill...poor things i bet they love you so

  • love them more i reckon ๐Ÿ˜€ xxxx

  • Oh that's so cute ! My Millie God bless her used to snuggle up with her daughter Lottie , they were so close . Wen Millie passed away boy did she know it โ˜น. We all did , life has not been the same . I now have a 5 month old kitten Called holly , she is a live wire ! But so funny to watch , not yet used to the other cats ash yet . That's cute ! My Millie and Lottie and Ruby use to sleep on the top of my bed too . That's such a shame about your rescue cat . So upsetting isn't it .. Oh I despise anyone who is cruel to any animal . Vile heartless people xxx

  • Awww how lovely is that .. To adopt Hun , that's such a loving thing . Too many people bet kittens and puppies , once they start to grow they don't want them , or the fact is they can't handle them as kittens . I had Molly I bought private . She was my first cat in 2008 I had her when I was first diagnosed with Cirrosis . She had a litter of 5 beautiful kittens , one one stillborn thioigh . I kept one from the litter thinking it was a boy . Until around 5 months old I notice md she was on heat lol, so Marco became Millie .. Millie had another set of kittens , I kept another one Lottie , then Lottie had kittens and I kept Ruby . Molly went out one day and never came back . Was so to upset .. So was left with the 3 girls who all were spayed and chipped . Then 8 weeks ago I had the hard decision to have Millie out to sleep , she had an agressive tumor under her tongue , she had been Vomiting blood that morning yet she seemed fine even the njght before , yes I could have taken her home but the vet said it was a way to say goodbye as this cancer would progress so fast she only had weeks to live if that , so I decided not to allow her to suffer . I have her ashes but can't look at them .. So I now have Lottie who is 6 , her sister Ruby who is nearly 5 , and little holly who is 5 moths old and spayed . Love my Cats , they are my company . I hate and detest anyone who mistreats any animal . Boy that I'd one thing I would Steo into intervene if I saw it happening ..๐Ÿ˜ก๐Ÿ˜ก๐ŸŒนxx

  • Sos phone went flat.they arw so much part otf families and lives arnt sos you lost your other one to tumour that was same for ours was so hard to say put him to sleep but felt must kinder for doing it...cried a lot 17 son cried buckets but he spent hours cuddling him and could eventually put his face as long as part covered by a hand up to the cats face...but that was a hangup that stayed with him from being a veryy young cat.

    ..your poor one with the broken tail !!!!!

    Xx cazer m.c.l.

  • sad but you did the right thing. It has to be done at times. Bless you both. Our animals are our babies. Xx Sheri Another m.c.l

  • Hi cazer , fazer , cat women lol , your welcome , I has never read that feeling cold was due to the liver either , after numerous searches on the web I came across. Nothing . Well I have an appointment pre booked to see my dr next Friday afternoon. To talk about my health and I have asked him to refer me for regular scans and a fibroscan , I am not under any hospital and boy getting proper care . Last scan was 2 yrs ago . I'm glad I'm not on my own . My best friend can't seem to grasp it . She moaned the other day about me living in a sauna ๐Ÿ˜‚๐Ÿ˜‚. Can't be helped can it . So you were diagnosed 17 yrs ago ? Wow .. Your doing great ! Yes i am going to do that tumblr dryer trick thank you . Sounds heavenly . Omg restless feet !! I have that too !! Non stop ! Good grief . So there's a lot more to this illness than I thought .. Brilliant post Hun .. So thank you ... Take care , wrap up warm ๐Ÿ”ฅ๐Ÿ”ฅ.. From one crazy cat lady to another ..

  • Heh hope you get some sense out of gp...are you in england...if so i may be wrong but if you can get a private consultation then if they feel they need to keep seeing you they may keep you on as nhs...please dont take that as gospel cause i could be completely wrong but its certainly worth asking the question.

    Good luck.i go to qe birmingham on 21 st hoping some change to get on that wishes....m.c.lady.p.s. i have trained my cat to sit on my shoulders like bob the cat and hes a good hotwater bottle.xx

  • Hi cazer , I live in Birmingham . Not under the QE as yet , was under city hospital till they discharged me last year . I was going to go private if I was getting nowhere with my doctor , so will see what happens Friday , I wil let you know , Oh so you go the QE ? you from Birmingham or surrounding areas ,? Massive hospital but great liver unit . One of he best . Oh hope you manage to get on that list ! Fingers crossed ๐Ÿ‘. ๐Ÿ˜‚๐Ÿ˜‚. Well my c. L . Friend you do have him well trained . Mine would not do that ever . My lap yes . That's about it . Xxx

  • I think hes a bit daft but very loving i have a nice photo of him on my shoulders but i look scary wil try and get a good one of both of us ha ha!!!

    We are somerset ...bit of a trip but worth it i original consult down here was friends with prof elias when i was first diag and as i had just had a prem baby they sent me up as i was still pretty ill even when i wasnt pregnant.cheers cazer

  • Aww . I think that is how a cat shiould be ๐Ÿ˜‚ Funny and loving .. Oh yes you must do ! I will look forward to seeing that one . Oh you're quite a trip away then ? I think there is a lot of people from everywhere that go to the QE , My dad went there for his pet scan when he had cancer . Great hospital . Oh I see , that was good then ! Wow .. Bless you . That must have been such an emotional time fit or you all ๐Ÿ˜ฎ.. Thank god you all pulled through ๐Ÿ’•๐Ÿ’•๐ŸŒธ

  • i saw private first and they kept me on the NHS. After the first visit

  • I was thinking about going private .. โค๏ธXx

  • it's not really worth the money. I saw several specialists before i saw the right one. Spent thousands when it should have been picked up well before it had. See how you go on this week first xxโค

  • Really ? Yet you would think that the treatment would be nice better and faster , that's bad ! Thanks for the advice sheri . Xxx โค๏ธ. Hope your feeling better ๐ŸŒน

  • it's faster n treated better which is wrong everyone should be treated the same but money talks. I spent money from being passed to doc to doc. Some charging 250 a consultation then the tests. I've paid 2000 for a blood n urine test. Times that by around 8 times. It's no cheap at all. I'm awake still not feeling right but a bit more human thanks xxx

  • That's true , we should all be treated equally were health is can concerned Jeeze ! That's s lot of money ๐Ÿ˜ณ. I could afford it but it's the principle isn't it . Glad your slightly better , so Strange as I was like that last week ! My friend has end stage liver disease and recently diagnosed with HE , she is freeing the same today . Your welcome Hun ๐ŸŒธXxx

  • save your money for better things. That's my advice. Charged me 5000 for liver biopsies and 3hrs care afterwards. Had to do it twice, at the end of the day its money for my kids and grandkids when I'm no longer here. Can't grumble with the recent care I've been getting on the NHS. Very grateful to them xxxโ™ก.โ™ก

  • That's a lot of money !! I could not afford that . I have given my daughter and sons and sister money this last year . Plus I'm going to see take that on 3 June . Vip , best seats , hotel overnight and full English ( won't eat all that ) plus we get on before Anyone else . It's in Birmingham but it's nice to know before and after the concert we can chill. In the hotel . Wasn't cheap either ! Oh I had good care when I was in back in 2008 , so can't say anything as not been since xxx

  • hope you enjoy it. ๐Ÿ˜€ it is a ridiculous amount of money that i feel was wasted through so called professionals' not picking up on it first time or where they being greedy? Xxxโค

  • Ithink the only way you can work round not spending too much is to get referal for a private consult which you pay for then get moved onto nhs books after this..

    So it needs to a consultant that you could be seen by through nhs as well e.g a liver consult.thats what my mum did and she only paid one fee.

    Try asking your gp if you dont get any sense.good sorry sheri that you had a rough time with your private experience


  • Hi cazer , thank you , I was not aware that I could ask my doctor to see a private consultant . At present I don't even have a consultant at all , this is why I want to see a hepetologist not a gastroenterologist. I want a full MOT of the liver and surrounding organs . I don't think that's not unreasonable considering I have had nothing in over two years .apart from an LFT in June that I requested myself . I will see what happens Friday . Either way I will get what I want . I am now in touch with Alan Hyde at the QE . Liver dept , he has been giving me good advice and has invited me to a meeting with other people of the same situation . Thing is it's a long way from me and don't drive . So means taxi fare of around ยฃ25. That's good isn't it about your mum , I will

    Make sure I do everything in my power . I will keep you posted .. Thank you so much . Your Care. Linda X

  • Do please check that is still the case as it was a while ago also you still need doc to refer you but if there is say 3/6 to wait you can ask for that first appt privately.


    Then make very clear that you cant pay for any tests and hopefully at this point you will get moved sidesways imto nhs.its really just queue jumping but if you got ages to wait it might be worth a try

    Sheri please dont tjimk i was criticising you spending and if we are desperate enough we would all do what ever we can to get answers.its so infair that you got passed aroumd and charged for privilage if they didnt know they sjould have sent to someone and not charged you..

    But hindsite is just one of those things not.much use till afterwards

    Love cazer.xx

  • Hi cazer , sorry my phone has not been working till today , well I'm on my way to the docs now in this freezing cold .. I have my list including I want my flu jab done . I will see what happens and I will let you know Hun .. Hope all is good with you .. Take care Love Linda X

  • I know now i could have gone to my gp to be referred but not then. Did it out of desperation and i suppose i was stupid. Had 2 major surgeries by a urologist privately he didn't notice anything on Ct scans etc. Kidney specialist didn't notice CKD. The mind boggles at time. Thankyou C c.c.l xxx

  • Yeah didnt realise there was a prob umtil 4months pregnant with 4th one and wouldnt recommend a dodgy ..

    Pbc and 4 kids.we had to have homehelps as i couldnt cook bath a baby or even hardly get up and down stairs so i am very lucky we all survived to tell the tale!!!!x

  • Should say dodgy liver !!

  • Think i wont be able to rememeber whos got which cats...cuddles to them all


  • and back to yours xx

  • Should have said how did appt go ?

  • Oh , my appointment is Friday afternoon . I have been trying to get a earlier cancellation but no luck xx

  • Cuddles back to your cats xx

  • Hugs to you both.xx

  • saw the QE this morning on BBC 1. Program called the hospital bed. 11am. It looks very much like Leeds St James's does. The way its set out. ๐Ÿ˜€

    hugs to all c.c.l. Xxx

  • Same here ! Oh the Queen Elizabeth' is massive ! Has a great liver unit too ๐Ÿ˜Šโค๏ธXx

  • good program isn't it? ๐Ÿ˜€ xxx๐Ÿ˜

  • Oh I love it , I like any sort of program like that ๐Ÿ˜‰โค๏ธXxx

  • haha. Me too. Watch them all. Realized life isn't like casualty or holby city though lol xxx

  • Oh I know ! Nothing like the tv shows that's why I never watch them lol


  • Hugs to you too cazer ๐Ÿ’•Xx

  • hugs cazer *โ™ก*xx

  • Left my phone behind by mistake...came home 13emails !!! thought ..

    Cor whats all this then i realised it was the chat about ..the bed...ha ha .not to miss out by being..i do get quite excited when i see qe on telly ..and proclaim theres my if i own it!!! but i do like the new air ambulance ones and 24hrs in a n e unless theres big cuts and that is a bit too gory!!

    Anyway hugs to both of you and keep up the good

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