newly diagnosed

Hi I'm 41 and have just been diagnosed with pbc and it's all I think about 24/7 which isn't really a good thing as I have two small children and juggle work too. I have been reading posts on here which I am finding very helpful. I have been trawling the internet too trying to find out what I should and shouldn't be eating. I've changed my diet quite alot, I've stopped drinking tea/coffee, having hot lemon instead. Eating grapefruit and oats for breakfast. Cut out saturated fats, eating salmon and chicken and making my own pestos, peanut butter etc. I'm not sure how much I should be changing my diet? I have severe headaches everyday and am not sure if this is as a result of the diet change. I am seeking alternative help in the way of homeopathic remedies. Does anyone know if these help? I also like a glass of wine at weekends, I've been told alcohol doesn't affect pbc? I am going to start taking urso this week. Any help and comments would be much appreciated. Many thanks.

44 Replies

  • If you have not already accessed and searched - even joined - the PBC Foundation, I would do so, asap. They are the experts and can tailor advice to your specific experience of PBC - we and our experience of PBC are all so different on here. The PBC F. host this site on 'Health Unlocked' and there is a link to their site at the top of this page. Once on their website, you can find email and phone nos for their advisors. If you phone or email, it may help to have all your test results, letters from consultants, and diagnostic criteria, symptoms etc, to hand.

    As to the changes to diet etc, it is great that you are taking responsibility for yourself in this way, and being so proactive. However, you have already had a big shock, and your body, as well as mind, will already be reeling, so I would be wary of making too many changes, too soon, to your diet or lifestyle. Maybe do things more gradually, give yourself time to adjust. I'd try one diet change at a time, and see how each goes, some may agree, others may not.

    Also, the headaches may be as a response to cutting tea and coffee. I think that is a very common reaction to a sudden lack of caffeine. So maybe try to do it more gradually???

    A lot of people on here seem to find that reducing gluten helps, but again, I'd approach that gently. Were you tested for Coeliac's when they were doing all the PBC tests? Another popular change is more exercise, but again take it easy.

    A major point is to not punish yourself too much. All autoimmune conditions prosper on stress and worry, so the best solution is to enjoy life. PBC is not now necessarily such a dread diagnosis for most, so do things you like, treat yourself.

    Hope this helps,

    Take care.

  • Sorry Gritty! I started writing when there were no replies and then distracted... before pressing send.

    Amazing how doing the flipping VAT leads to being easily distracted.

    At least we weren't contradicting each other!

  • No probs at all dear bp, as you say: 'at least we weren't contradicting each other!' Plus, I didn't know about grapefruit.

    What was that about cutting our addiction??? At least you have the excuse of needing a distraction from VAT!!

  • Hi GrittyReads, thank you so much for your time and reply to me, it is much appreciated. I have joined the pbc foundation and will have a look further on the site, I have read abit about autoimmune conditions thriving on stress, I will try and not worry so much, I think what's stressing me out more is the diet side of things so I just need to sort that out in my head and maybe not go ott with cutting things out. Thanks for info re Coeliacs. I have just been told I have a milk allergy/intolerance. Been for two different allergy tests with two different practices and they told me the same thing. I wonder if its pbc related. Milk has never affected me before. I have cut out the milk but the headaches are still there. Might try having just one cup of coffee in the morning, it could be the coffee although it has been 2 months since I stopped drinking it..we'll see. Thanks again for your reply.

  • Hi Tg10,

    A good idea before you make any drastic changes might be to join the PBC foundation (free & link at the top of the page) as then you'll have access to friendly, knowledgeable people at the end of a phone/e mail but also the excellent 'Bear Facts' magazine and The Compendium, a guide to living with PBC. The articles written by doctors are particularly interesting and relevant.

    There is some research that says some coffee is actually good for the liver - if you use the search function on this site you'll find the postings.

    Also care is needed with grapefruit - can interact with many medications - so best to check with your GP first.

    There might be several reasons for your headaches, including withdrawal from tea/coffee and tension looking at a computer screen researching PBC!

  • Thanks very much badpiglet, I definitely think the headaches are re too much reading up on pbc! I'm gonna change my diet and ditch the grapefruit for a bit, gonna start urso today so having a green tea and banana before I start. Thanks ever so much for taking the time to reply to my post, it is much appreciated.

  • Was going to say same thing. Cut the grapefruit, don't worry about the coffee. Balance is important. Diet not a huge factor if you have normal balance diet and are healthy BMI. it gets better, you start thinking about it less xxx

  • Thanks Junolee, I've cut the grapefruit and lemon this morning, I've got a bit of a heavy head but nothing like the severe ones I was getting, wonder if it is anything to do with them. I've also swapped cows milk for soya milk so gonna see how I get on for the next few days. Thanks ever so much for taking the time to reply. Thank you xx

  • Stay with the Lemon water, I do a pint of that every morning and find it refreshing. Think it's just grapefruit the jury is out on for the liver. I have a bit of a dairy intolerance myself, have done ever since I was a young child, just a bit nauseous if I take milk before eating anything else. Anyway I have osteoporosis now so on meds for that too so I think at this stage what I eat / drink has no great effect on that anymore. Balance is the big thing, it's difficult though, your iron goes down in you don't eat enough meat and your cholesterol goes up if you eat too much :) It's great on here though you will find it very helpful.

  • Thanks Junolee, I have changed the lemon and grapefruit for green tea, I will definitely re introduce the lemon at some stage but steer clear from the grapefruit. When I was having milk on my porridge I was feeling sick afterwards and very heavy headed. I've been having soya milk for a week or so now and that has disappeared slightly. I have cut out cheese for the moment, again I will introduce this back into my diet. Like you say, its all about balance. I am definitely find communicating on here extremely helpful :)

  • Good morning Tg10,

    i have sent you a direct message.

    Best Wishes

    PBC Foundation

  • Thank you so very much for your help and support. I have joined and am continuously reading up on pbc. I really appreciate for time and will be in touch if I do have any further queries. Once again, many thanks.

  • You are most welcome Tg10.

    Best wishes

    PBC Foundation

  • Hello Tg10.

    You can have a free dvd all about PBC sent to you from Liver North. Fill out your details online. They also have their newsletters online and you will find that they cover a lot on PBC. PBC Foundation now has some of their newsletters online I have noticed. If you join you receive each one as it is out.

    One thing about eating grapefruit (I eat it occasionally) is that if you are on any other medications check if suitable as there is something about grapefruit and certain meds (statins are one).

    I asked re diet when I was diagnosed 2010 but there's nothing really we are informed to avoid.

    Alcohol I think is something that you just use your own common sense and judgement with providing it seems that you are not in a later stage of PBC. It is said the odd glass of wine won't do us any harm. I choose to abstain. Never been much of a drinker and decided not to bother after myh first LFTs in 2010. I did have a bit of whisky in a tea over the festive period when it was very cold but nothing prior nor since.

    My theory since diagnosis is that due to bile being required to break down fats, eating that bit less is probably sensible. I was sensible pre-diagnosis but now I just tend to go with less and odd times (ie holidays) I will eat something that I wouldn't normally (ie shared a portion of chips on a recent weekend away, don't normally eat them, rarely ate pre-diagnosis either).

    I personally think it is best to just keep eating as healthily as possible. It is said in the latest edition of Bear Facts on the subject of urso I think it is that changing diet or upping exercise for eg is of no bearing on changing or curing PBC. It can make us feel a lot better and also stave off developing other things that we can also do with PBC.

  • Thank you very much for your reply peridot, I am really grateful. I think I am not going to be so ott re food, and like you I think occasionally if I want a treat I may have one and just to cut out the bad stuff. I've never been one for cakes and chocolate and eating healthily makes me feel better anyway, I've certainly shed a few pounds doing so. Thanks for the info re liver north, I will have a look. Thanks again.

  • Hello Tg10.

    I can only say how I've been managing with the PBC over the last 5yrs. I thought I ate healthily pre-diagnosis and continue to do so.

    I have tried a few experiments of my own in the last few yrs but have to say can't say that made a whole heap of difference and looking at the blood results over the last few years on urso, mine seem to remain on a sort of wavy line if plotted on a graph, they go up a bit and then down a bit. They remain abnormal as in higher than they would be as normal readings but they are showing no concern at present and other bloods that we are informed are of some markers for PBC seem to be holding out on their own as quite normal still.

    I just try to enjoy life and some days I do feel that I should perhaps have not had this (ie the odd chocolate bar when out on a walk) but then I think why not, I don't really over-indulge.

    I actually had no weight to lose at diagnosis as for several years due to running about a building for 4hrs up and down stairs (domestic work) 5 days a week and then on my feet working voluntary of a weekend day I was quite trim and have remained so, my weight has remained constant since the year after diagnosis.

    I know for me I feel much better if I cut off eating after the evening meal. I find I eat better breakfast and then lunch but then start tapering off and often find I don't really feel like evening meal but manage to eat some. With fidgeting all evening after 9p.m. and then itching through the night I think it is fair to say that I probably burn several calories off constantly.

    I tried gluten-free mainly a couple years ago due to my son having what was a temporary bowel problem that was investigated at hospital. His doctor reckoned too much of the antibiotics in a short period of time and recommended he try cutting out wheat gluten for awhile. So the family had meals that were gluten-free and also wheat-free but can't say it made me feel any different. I've never had a problem with wheat and can't say I over-indulge in that really. I alternate breakfast, one day I can have porridge, another wheat biscuits.

    I did cut out the MSG years ago pre-known PBC due to trying not to have artificial additives. Saw a programme on 'Rip Off Britain' last week on BBC tv and it was featuring food. One of the presenters visited a scientist and the topic was MSG. Apparently it is thought not to be so bad and he couldn't see why there is the fuss about it in foods. Another programme I have seen on Channel 4 about food "Food Unwrapped" visited various factories and the like regarding certain food additives and oddly enough certain ones that I thought were not that good are in fact pretty harmless.

    One thing I draw a line at is artificial sweeteners. I've always thought you might as well have a bit of sugar that is natural even if deemed a baddy or cut the sugar out altogether if you can. I haven't taken sugar in hot drinks or breakfast cereals that I can add to for decades, prefer not to.

  • Thanks peridot, I really appreciate your time in replying to me. Your comments are really helpful. I too watch the food programmes and find them most interesting. It's difficult to know who to believe, some are quite contradictory. I think like you say things in moderation. I don't eat sugar on my cereal, I was trying honey but have recently been told by an allergy consultant that honey may not be a good thing. I cut that out and am having sultanas, apriocots and figs instead, have read some of these are high in calcium among other things. I am really enjoying the eating healthy side of things, I enjoy cooking and making my own pastes etc is quite satisfying. As I'm cutting out the diary for a while to see if that is the cause of my headaches I'm making things I normally wouldn't to compensate on the calcium intake. I think eating healthy in itself makes for a feel good factor. Many thanks again.

  • Hello again Tg10.

    I think it is interesting finding out about how others with PBC are fairing and also certain ideas or certain things that some do/don't do can perhaps be helpful to each other.

    I've not heard about the honey for instance. I did ask my consultant on my first visit regarding if I shouild change anything dietary. At the time I wasn't diagnosed and had the antibodies test that day. He just said, "The liver loves calories" and just told me to continue as I had been doing. After diagnosis I did ask again and he just said to continue as normal.

    I love honey and do have to say that I use a teaspoon in porridge if I feel that way inclined as I don't add sugar. I alternate between the one you make instantly with milk and also the original porridge oats. I often put cocoa into instant porridge as that has no sugar and I did buy some milkshake powder several months ago in a strawberry flavour and added that for a change.

    I do use honey on toast an odd time too. I can't say I'll quit having the odd teaspoon here and there myself. I have tried various honeys even the Manuka.

    As far as I know I've not got any allergies and not seen anyone for PBC other than the hepatologist.

    Often when I go a long walk with my husband we buy a pint of milk enroute or at the end of the walk and drink that. I did see a tv programme earlier this year that did an experiment on hydrating the body and out of fruit juice, water and milk, it was found that milk was the most hydrating following exercise. I also see it as a way of taking in calcium as you have mentioned.

    I have owned a juicer for over a decade and when my last one lost the motor power I decided I wouldn't bother but a few months ago now I bought another one as I was missing not having one. I don't go overboard on juicing, just find sometimes I want something different. I have a little book of juicing and use spinach with apple, carrots, etc and find that one made with vegetable and fruit is quite palatable. Blackcurrants are rife at the moment so I'm taking advantage of those to juice with apple.

  • Hi peridot, sorry for the delay in, kids etc That's interesting about the milk, I've quit milk for the moment due to my headaches and am on soya, I'm going to reintroduce it though at some point. I too have a juicer, I've been having carrot, tomato and beetroot every day since I was diagnosed in May. I've read its a good liver cleanser but once again I'm not sure if I should be doing this. I'm really enjoying the juice though and find it really refreshing and its a way of getting one of the "5 a day". I think I may well research a little further into the quitting honey side, it was just one allergy guy that I saw, when I have time I'll look a little further into it. Thanks again for your replies :)

  • Hiya Tg10.

    I have often wondered about juicing myself, the highly concentrated liquid as we use more fruit and veg to make.

    But I then decide that if I was to just use one or two maybe three different fruits and/or veg then wouldn't be a big deal.

    I have tried juicing beetroot before but unfortunately where I live it isn't that readily available. I do buy the fresh one that has been dipped in vinegar or cider vinegar for eating with meals though as beetroot is supposed to be good for iron. I use carrots a lot as find they are readily available and can be much much cheaper. I'm not one for going overboard on fresh tomatoes myself. I often chops some fresh up and put a teaspoon of butter with them and then heat in a pan as they taste much better and the flavour is all the more concentrated.

    I would try a tangy apple (like Granny Smiths) with your beetroot and carrot.

    I watched a tv programme several months ago about the nutritional qualities of certain foods that we consider healthy and it was interesting to find a few things out. Carrots eaten regularly as juice can actually make your skin look more glowing as an experiment was done with students at the time. Granny Smiths have been deemed the best apple for intake of a certain chemical that is in more abundance in these than other varieties (I cannot recall the chemical name now). I regularly buy Granny Smiths as I have never been much of a sweet tooth myself.

    I also buy a good quality licorice in a soft sweet (Panda is good) as licorice is apparently a good source of iron too and said to be a cleanser. i have read that if one has high blood pressure to not overly-consume licorice though. I read that on a box of pure licorice tea I like.

  • Hi Tg10

    it would be interesting to know if you find any reasearch on honey, that relates to the liver. I have honey every day I use it as a sweetener for the warm lemon water I have every morning. . In the summer months I use honey and cinnamon, in winter I use manuka honey.

  • Hi I have had pbc for 16 years I live a normal life I eat as I did before and I drink a couple of times a week. drink plenty of water for the headaches stop worrying do not read into it to much hope this helps.

  • Hi susanburgess, thank you for your reply, I have decided not to be so ott with all the changes I have made as all I am thinking about is what I should and shouldn't eat. A healthy diet and a little not so healthy stuff once in a while. I am feeling a lot more positive after reading all of your kind replies. Many thanks

  • Hi Tg10

    I was diagnosed with coeliacs at the same time as PBC. The only dietary advice I was given for PBC was to eat little and often and cut down on fatty foods. I'm not very good at sticking to the gluten free diet but I do try, good days and bad though.

    I think everything is moderation is a good guide, cutting out things you enjoy only adds to the misery :-)

  • Thanks Foundry 9, cutting out the things you enjoy is definitely hard, like you say, everything in moderation. I'm not going to go over the top with cutting out as it's making me concentrate on that and nothing else. Thanks for your advice :)

  • Hi advice I was give was to eat little and more often.think red meat is a bit more difficult to digest..yhat doesn't mean you can't have it but maybe a bit less and not too late in evening.i was being very sick when newly diagnosed and found that less fatty stuff everyone has said fairly healthy but everthing in moderation .check with doc or pbc foundation before permanently cutting all sat fat as may not be wise.enjoy your little ones and ignore the dust!!!it will always come back!!do the fun things whenever you get the chance...I was the mum of a 9 7 3 and3 month old when I found out what was wrong it certainly focuses the mind on what's important.even if they are little a lovely hug can be the best medicine. I was a bit of a compulsive cleaner before I was poorly but I then couldn't do it and soon realised a board game or book with them was still possible with fatigue. I know there is a certain amount that has to be done but just do the long as everyone is fed and happy thats all that really matters. .....oh and clothes are usually useful..ha ha!!good luck .cazer

  • I also think too that too much fat and having PBC isn't so good either. Given we need the bile to break it down and we are taking urso that is a bile component I think that that bit less of fat in the diet isn't a bad thing at all.

    I find some days I feel I have got the balance exactly right with fat and the intake. Can't explain how I think this, I just feel that bit different. I know that in PBC stools can become pale but also the urso can cause that. I never had any problem bowel wise pre-urso but after taking it I did notice that my stools started to change a little colourwise. They were that bit paler. Some days I have noticed they look quite normal and I think it could be due to the balance of the day's dietary intake.

    I do agree that we have to have fat in the diet as it is required for absorption of the fat soluble vitamins which can be compromised in PBC. These tend to be the vitamins that we can have less in the system of.

  • Hi cazer thank you very much for your reply, I think you are definitely right, the dust can wait and hugs are the best medicine. I trying not to obsess too much. Thanks again.

  • Thanks tg10 my lot have survived to tell the tale!I did have to give up work as my pbc was knocked on further by having glandular fever with being pregnant at the same time. I was okay with the first 3 pregnancies. I did eventually get some help in the form of homehelps but I did have to fight for this. We unfortunately had no heathly parents to help at that time but my friends and sister and siater in law helped although they themselves were are worked. Sorry I m rabbiting on a bit but it all seems very scary at the time but ots surprising what changes we can deal with. I worked as a dispensing optician so missed my job in all ways. If anyone offers help take it don't be too proud..most people will not offer unless they mean friends mum did my ironing as her daughter lived away so she said I was her honorary daughter I did accept gratefully

    Good luck...sorry for nattering wishes.

  • Hi cazer, its good to natter :) thanks for your reply. It is scary at the time and I'm a stickler for wanting to do things for myself and not accepting help from family. Fortunately I don't have any other symptoms apart from feeling dog tired and severe headaches although not sure where these stem from - probably worry. I was diagnosed with pbc following a virus that attacked my immune system and resulted in a reactive arthritis where I couldn't even undo the top of a tube of toothpaste for a few months let alone lift up my 18 month old at the time. I was lucky to have people to help too. Best wishes.

  • Healthy diet is always good no matter whether u we have Pbc or not but there is no diet restriction unless u are in Cirrhosis phase.. Tho, we need to be careful eating stuff that stress liver more than others..

    I eat whatever I like to eat but most of the time I eat healthy .. I just drink beer in my weekends but not more than 3 with lots of water too..

  • Thanks Sachin1234. I am eating healthily too most of the time but sometimes on the odd weekend with a glass of wine I may have something I normally wouldn't. I think may be it's ok in moderation. Thanks very much for your comments.

  • I read your post and all the replies. I must say that I was/am the same as you about my diagnosis - I was consumed by it. Im the sort of person that likes to be in control because Im always skeptical about doctors and drugs, I believe I can cure myself!.I have Sjogrens and PBC, which came first I dont know. I first cut out dairy and Gluten - Immediate benefits and had no symptoms at all until I took the Urso which brought all my symptoms back, achey joints and fatigue. I came off Urso because of constipation and after I got that sorted, I felt better and my blood tests were within range. So that has spurred me on. Now Im reading a great book on the Immune system by Susan Blum MD. She tackles immune diseases first by diet,Stress, Gut and supporting the liver. I feel like Im doing something to help myself and Im the best I can be. Dr Blum says most autoimmune people are gluten insensitive - on the way to being celiac, thats why it doesnt show up in tests. Well, lots of people won't agree with me but we are what we eat I believe. Kandypat

  • Hi Kandiepat, thanks very much for your reply, I think you have certainly hit the nail on the head, I was/am consumed by it and am too am always skeptical of doctors and drugs and also believe I can cure myself! I have seen two homeopaths amongst other alternative therapies but now I feel slightly apprehensive with these. Definitely information overload! Reading everybody's posts has been so helpful. I will have a look at the book you mentioned. I have recently bought a couple of books to do with "cooking without" i.e. cooking without saturated fats and replacing them and even a book about how to grow my own veg etc. I too think we are what we eat and what we put into our bodies will have an affect. I am enjoying the healthy eating but do indulge occasionally. Thanks again.

  • Hi there! I am also 41 and was diagnosed a little over a year ago. I was so scared and nervous about what this all meant. My doctor put me on Urso and all my labs went back to normal...he also told me that with Urso I will be able to live a normal life and long into the future. As for diet he suggested I lose weight (duh, I suggest that too), that I try to eat sensibly, and not to have more than 3 drinks in a sitting (But that doesn't mean everyday). Anyway, I just want to let you know you're not the only "young one" and I completely understand how you are feeling. This whole thing is super upsetting in the beginning. Good luck!!

  • Thanks Tracy181. It is really upsetting in the beginning, all I could think about when I found out was my kids which made me even more upset. I am feeling more positive now and really appreciate your kind comments. I have just started urso. When my doctor told me I had pbc he wasn't very sympathetic and when I asked should I change my diet etc all he could say was "you can climb mount everest if you want but nothing will cure it" he didn't offer any dietary advice whatsoever, neither did my GP - he just said to carry on as normal and it was up to me whether I want to lead a healthy lifestyle. Reading comments on here is a great help. Thanks again for your reply.

  • Hi, can't really add much to the good advice already given but just wanted to say good luck...

    I was diagnosed at 37 and nearly 2 years in then my blood results have had some blips but generally coming down and I've had 90%+ good days. As in early stages I still enjoy a glass of wine but people seem to vary on their response to food and alcohol. All you can do is listen to the guidance of your consultant and your own body to work out what's right for you.

    Final thing is cut yourself some slack. Diagnosis is a shock and you'll need time to get your head round it. You'll develop a routine and an understanding of how PBC effects you in your own time. If you need a few spa days to give you head space then it's an excellent excuse!!

    Take care x

  • Thanks CheshireEM, I think the spa days is a great idea, I do have a treatment booked at the end of the month. Thanks for your advice, I've lightened up a bit since reading comments on here and haven't got that butterfly (well stomach churning) feeling so much. Thanks again x

  • CheshireEm is so've had a big shock as diagnosis of pbc is very rare....I know I was ..

    Well what on earths that !!!!how can I fix it. ...Give yourself some time be kind to yourself ..the diet can wait a bit have some fun with your family and if you have a partner they will be shocked as well! So maybe try and have some r and r with them. Spa /or gentle day out sounds a brill idea.gradual change in diet is as others have said more sensible. ..but general rounded living is probably top of list reassuring to know life goes on in a normal way despite having a disease with a wierd name.the only other person my gp had seen with pbc was a lady in her 70s who'd only just got symptoms. If it weren't for the glandular fever I think I would probably just be a bit more tired than before. In hindsight I'd had vague symptoms for probably it can progress v.slowly and with urso almost be at a standstill. B.w.cazer

  • Hi Tg welcome to the site and to life living with PBC. U r certainly not alone as u have read. I was diagnosed with PBC when I was 31 back in 2002 after a yr of suffering the symptoms severe itch 24/7, fatigue and joint pains worst symptom for me was itch and y went to Dr. Started on Urso took it religiously for ten yrs. Told at diagnosis live normally but healthily I.e everything in moderation. Found myself things that aggravated symptoms too much caffeine, (I love tea but hate coffee),sugar,fat or too much spices so only indulged in foods r drinks that contain those as a treat. Drink less tea but lots of water at least 1-2 litres day helps flush out toxins I feel plus keeps skin and body hydrated. Only drank alcohol on special occasions Christmas birthday as feel it would just put more pressure on liver. Had my daughter at time she was only 5 at the time and was workin full time. Eventually had to reduce to part time his but continued workin right up til0 Jan this yr. Since diagnosis have done a full time diploma part time degree had another baby (my kids are now 19 and got married just last yr! So didn't let Pbc rule my life. Managed symptoms with meds and diet and lot of patience! Stress no good either for Pbc so avoid if poss! I just had transplant at end of June there and am doin great so far for me I did mmt respond fully to the Urso my Lfts were also about 5 times the highest level m the normal range so I developed cirrhosis and thus needed transplant. But as say doin well and now starting to enjoy life once again and planning holidays and to return to work prob in New yr give myself time to totally recover and be fit to work again. So fear not life may not be t.d the same but u can live a full life with PBC and a long life and prob die of old age r some other disease rather than with PBC. Best of luck. Xoxo

  • So very thrilled to hear you have had your transplant and are recovering well....what a trooper you are and an example to us all !!

    May your life be long and happy mayday.

    Karaliz from downunder.

  • Hi mayday-Yeah, thank you and thank you for sharing your experiences. I really appreciate your advice. Thanks again xx

  • P.s. I am going to be 45 in Oct and my daughter is now 19 going into her 2nd yr in Uni my son is 8 going into primary 5 And am truly starting to really love life again as have no Itch for 1St time in 14 yrs and after being on transplant waiting list 4 10 months and not being able to make any plan am now able to start making plans albeit the sunny holiday won't be til next yr it's just fab to be able to make plans. So truly loving life thanks b to God and my amazing generous donor God rest her lovely soul. So chin up just take life by the horns and live it and enjoy it and your children they are only small for such a short time. Bfn xoxo

  • Take each day as it comes,meditation is so helpful to me.

    I'm 76 and leading an active lifestyle, I'm now sure I had PBC since I was in my

    40s but was too busy rearing children to take care of myself,so keep positive,

    Life is precious.

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