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Cherry69 profile image
34 Replies

Hi all on the 3 December I was told I had pbc . I am so scared as I would like to be around to see my girls get married and to be a nan . I just keep crying and I am only 46 years old .

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Cherry69 profile image
Cherry69
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34 Replies
Oidra profile image
Oidra

Cherry69, read some of the comments on this site and you will find that everyone feels just as you do when they are told they have PBC.

The first thing to do is to join the PBC Foundation ( link at the top of the page) and get the facts . You can also talk things through with them which may help you to understand what is going on. There are a lot of us in this club and we help each other when we can.

I am 75, have 3 children and 8 grandchildren, have PBC and enjoy life. Hope this helps.

Cherry69 profile image
Cherry69 in reply to Oidra

Thank you please can I ask how old you was when you was told sorry to be a pain .

Oidra profile image
Oidra in reply to Cherry69

I was 60 when it was confirmed but realise there was a sign in my 40`s when I was refused as a blood donor as my blood " wasn`t right" but as I was so busy I didn't investigate.

However you will find people on this site who are your age.

Cherry69 profile image
Cherry69

Thank you

Mrsbry12 profile image
Mrsbry12 in reply to Cherry69

I am in the same boat as you I was told last month that I had pbc I am 40 years old. There were signs of it in 2010.

Cherry69 profile image
Cherry69

How are you feeling. As I would like to continue to work but am so scared, I am going back for a liver scan but not sure when as the appitment not come as yet . they have start me on medication to help slow the progress down so do hope it works

in reply to Cherry69

Hello once more Cherry69.

I had a scan back in 2010 and it was said by the hospital consultant when I saw him on my first visit that the liver and surrounding organs looked quite normal. He pointed out bile ducts that he said looked quite clear.

I was working flat out full-time back in 2010 when I started to itch and continued. It was my husband who asked me to give up the job as it was not that good (found myself taking it home and working earlier than morning start, later than evening finish) and after much discussion and the fact that I am in receipt of a private widows' pension from my former late husband's employer for life I did do. It did free time up together as we don't have to juggle our holidays together anymore.

No sooner had I finished paid employment I was asked to go back into voluntary work so that is what I did.

Hello Cherry69.

You are exactly the same age that I was when I was diagnosed. I was informed I had PBC on 4th December 2010 so been diagnosed 5 years now.

I don't know how it came about you were diagnosed with PBC but I started itching early 2010 when I was 45. At the time I had fatigue and these were my only 2 symptons I knew about. The bloods showed to be abnormal as in 'elevated' and along with antibodies AMA being found in a 'high titre' I was diagnosed with PBC by then 46.

Fatigue at some point vanished in my case during 2011. Itching has improved that it tends to be with me later night and during the night causing broken sleep. On the whole I feel quite normal. If I didn't itch I'd not know I had PBC.

I had seen PBC mentioned in a library textbook during 2010 and then I had a look online and read more. I never mentioned to the doctors but when I got a call from the GP surgery following an hospital appointment several weeks prior I asked what medication I was to go in for so I knew the diagnosis when I did actually.

I think it can take some time to accept that you have PBC that is something that is apparently with us for life at present due to there being no cure but at the same time it is said to be something that is normally slow progressive.

I do think from my early experience of being informed I had PBC that it is better to wait until the first bloods are taken following starting urso. I think it is this is that is needed to convince oneself that perhaps there is a lot of hope on the horizon and that the future might not be so bad. I had good results in my LFTs (liver function test) and the GGT blood test (normally done in liver conditions) after just 2 months on urso.

I started to take even more care of myself though I was never really a sickly person prior to 2010. I resolved with myself along with my husband that I'd crack on with life, enjoy it best as I can and have tried to do so in the last 5yrs. I did read a bit further into PBC several years ago but have to say I switched off as to me no use worrying about something that might never be and letting life pass me by without trying to live it to the best I can now. I'll deal with things as and when.

My only grandchild at the time wasn't even a year old when I was informed I had PBC. She is now coming up to being 6 and I have another grandchild on the way in a few months.

Even though we have PBC I do think that by having it we might just make even more of our lives if we are able to do so than prior to being diagnosed. There are a few unimportant things that I used to enjoy pre-PBC (ie going to cinema) but I feel I'll not probably do again (I tend to feel prickly if sat down for long periods of time and then get fidgety) but I intend to whilst I am still well able to do lots of other things (like walking for instance).

Cherry69 profile image
Cherry69

Thank you for your reply I am just finding it very hard at the min.i just went for a normal blood test at my gps,and then she did some more called me and said that I needed to go and see I liver Consultant when they told me I had pbc I did not know what it was she did explain it to me but it was hard to take in.i have start on the Urso so I just hope that they will help me.i am still at work as night care assistant as I do love my job and I have a home to support as my husband can not work he has cf, I am trying to loss Wight and eating more healthy,I go running most days 1,2 miles and I at the min I am feeling ok.i do have broken sleep but that is because I get hot going thought the change. You have helped me thank you

Joker321 profile image
Joker321

I was told on the 2 March this year at 39 I had pbc like yourself I cired not stop for days could not get my head round it ,didn't understand what it was and kept thinking why me was so scared, but I finally took the courage to read up on it and joined a few websites liked yourself still scared about the future and what it will bring , but not feeling as bad as I have heard some amazing stories people in their twenties with this disease as well ,plus got talking to lady that has it fourteen year and still going strong , I hope this helps you a wee bit ,

Cherry69 profile image
Cherry69

Thank you i have read a little about it but I just read that 10 or 15 years and that scared me a lot as I would like to be here longer and yes you are right all I keep thinking is why me but thank you for your reply

in reply to Cherry69

When first diagnosed I was told by my GI specialist that I would probably need a transplant in 5 years or so - 27 years later I'm still around (no transplant yet), albeit I am now in cirrhosis stage. We are all different and have different outcomes with PBC, but there are quite a number of us who have been diagnosed 20+ years. I know it's scary now, but as you gain more knowledge of PBC the 'scariness' should evaporate.

I hope this helps.

eecos profile image
eecos

I am 33 and been diagnosed for one year. Like you I was very scared and the more I read the more worried I got with some information pointing out 8 years for progression etc. Since then I have found that this site helps so much reading others experiences and realising that we can work with this condition and live a healthy life. I work full time and am a single parent to a 10 year old boy. I do feel tired but I just have to keep going. I hope that the future brings a complete cure but until then the urso appears to be effective and I have learned what foods my liver doesn't like so that I can avoid them and have started a gluten free diet which has made me feel lots better. What I would say is try not to read too much on Google. Keep well x

Cherry69 profile image
Cherry69 in reply to eecos

Thank you and I will look up about a gluten free diet to as i want to help myself as much as I can I have to keep going for my girls and husband how's have cf and the Drs said to him would not like into his teens but he is now 55 years old I need to take a leaf from his book but it is still very hard and I just find my self crying but thank you for your reply .

teddybear7 profile image
teddybear7

Hi Cherry if you haven't already join the PBC foundation they have helped me greatly. In fact I'd have been a head case without them. Lots of eminent people in ths pbc world do say you you'll probably die with it rather than because of it. You'll feel better when you educate yourself. Don't rely on Drs or specialists for much info, they do what needs to be done but won't educate you. Welcome to the family you'll be OK with us honey. Xx

Cherry69 profile image
Cherry69 in reply to teddybear7

I have joined the foundation thank you for your reply but I just can not get my head around it but I am sure I will two months ago I was very happy and I would like to be happy again but at the min I can not see that and inhope for mean years to come my mum and dad have been very good and support me but I do not want to put to much no my husband with his cf sorry I am now crying again thank you

teddybear7 profile image
teddybear7 in reply to Cherry69

So sorry I didn't mean to make you cry only to say your not alone. I'm 18 months in to diagnosis & it isn't easy. Close ones don't always realise what your going through. It has be a bit of a cliché but I have got quite used to saying to myself. There are so many others worse off than me. I can still function pretty normally live life and its not cancer. It has taken a bit of adjusting to but I'm getting there. I don't need a wheel chair I can still work enjoy my family & laugh out loud. My pluming is just a bit different to others. You'll get there. It's just a time thing. Xxx

Cherry69 profile image
Cherry69 in reply to teddybear7

Thank you but that the min it dose not take much the make me cry it was not you sorry to be a pain and I am sure I will get there in the end but you are right family members do not u stand how I am feeling but I am going to work tonight as normal

raqs67 profile image
raqs67

Hi Cheryl, I've been diagnosed almost 18 yrs now and had problems for a few years prior to diagnosis, I was in my late twenties when first started symptoms, I'm now 48 yrs and remain working full-time, although it is a struggle some days, I have to say it gives me a push to keep going as well. Try not to dwell on things too much, I was so afraid when I was diagnosed, 2 young children I was afraid I'd never see grow up but they're 23 and 18 now. Live life to the full, there are worse things that can happen, it's not as awful as wr first think, it is only now that things are going a bit worse for me so I've had a good run. Take care x

Cherry69 profile image
Cherry69 in reply to raqs67

Thank you but you must keep going as I did read that a lady has had it for 27 years and one 25 years and was in her 80s thank you for your reply

susanburgess profile image
susanburgess

We all felt like you when we was first told we had pbc. I have had this for years.I had a ultra sound every 6 months and a blood test at addenbrooks hospital. Now i go once a year which is good news.Have they put you on urso tablets, there are hundreds of people with this so stop worrying. I have 2 children and 6 grandchildren i am 75 but i feel fine Join up and see if anyone is in your area and maybe meet up with them.Hope this has helped you

Cherry69 profile image
Cherry69 in reply to susanburgess

Thank you susanburgess I am at addenbrooks hospital in Cambridge I am waiting for my scan to come. The consultant call me the next day to tell me my blood test that I had done was normal for someone with my illness and try not to worry and to get on with my life as normal but it is very hard to do so but I am hope to get there soon I am having a new bathroom put in so am hoping that will take my mind of it thank you

Cherry69 profile image
Cherry69 in reply to Cherry69

Sorry yes they have put me on Urso

Louedwards profile image
Louedwards

I was diagnosed on the 1st of December and am also 46.

I knew nothing about PBC and still no little. I too am scared of the unknown. I also find that no one knows anything either. So everyone can't understand why you get so stressed. And I just get oh you'll be alright.

I was told by consultant to only go on the British liver fund site to read about it. That there's a lot of horror stories out there. I've also joined the PBC foundation.

I was in shock when I got told and asked nothing. I now have 3 months to wait to ask any questions. I've been put on urso straightaway. All this just through checking my hormone levels. I also think I'm peri menopausal too. The joys.

I'm sure on here you'll find a few answers to help you. I certainly have just seeing that people to cope with this and it's not all doom and gloom.

in reply to Louedwards

Another good site for information about PBC is the Mayo Clinic.

<mayoclinic.org/diseases-con...

Cherry69 profile image
Cherry69

I was in shock to and I did not ask any think to I came home like you said some horror stories on the net but I have joined the foundation to and read that the olds member was 103 years old and she die with pbc not from it but I am still very scared thank you for your reply

I think your reaction is normal. It's a shock to be diagnosed with any disease that effects a major organ. The unknown is also very scary. The more correct information you collect will help you come to terms with it and help you see that it is not a death sentence. Pbc is different for everyone, what's normal for one person might not be the same for another. I got diagnosed in Spain in 2012 and the specialist told me to go and live my life. In time you will adjust to the fact that you have pbc.

Cherry69 profile image
Cherry69

Thank you I am trying si hard get on with it one min I am ok then not

Jowen profile image
Jowen

Hi Cherry69, I was diagnosed a couple of years ago, when I was 46. I don't drink or smoke or do anothing that could hurt my health so I just couldn't believe it when I was told there was something bad going on with my liver. It will take time for you to get used to it. We all seem to have slightly different problems, I only itch sometimes but I am allways fatigued and during the winter months I get horrible joint and muscle pain.

It might take a while for you to identify what you need but it will be a part of the process, it is comforting to know that there are people living long and active lives with PBC.

Shine1 profile image
Shine1

Hello. I completely understand what youre going through.

I still feel like that sometimes and think of the PBC, even if just in passing, daily.

I did the same as you, didnt know much about it so went online and found all the horror stories about the few years youll have to live before a transplant. its scary to read that! The PBC Foundation are good, I should utilise them more too.

I was diagnosed not that long ago, Im 33.

Im not on Urso yet.

Ive had many years of multiple other symptoms (too long to list!) including pain in varying forms and many years of bad digestive problems.

So while its been horrible to think of this condition as being permanent, its also been reassuring to finally have a label.

Im still coming to terms with it and only told family and a few close friends so far.

Being on this forum has helped.

I think an important thing to remember is that being upset about it is probably something you (and we all) need, so dont berate yourself about that.

I guess its a time to take stock of whats important in life and how we can help make things a little easier for ourselves- its all a work in progress isnt it!

Take care x

liver-bird profile image
liver-bird

Dry your tears and think positive Cherry. Join PBC Foundation and tune in here regularly as lots of empathy and support is available. Pbc is not the end of the world. Just look after yourself and eat healthily, get plenty of rest and try not to stress as that has adverse effect. Urso slows the condition significantly and you are most likely to be around to spoil your grandchildren.

Welcome to the club - you will soon adjust to pbc and will be reassuring other newly diagnosed pbcers before you know it ☺

Cherry69 profile image
Cherry69

Thank you it is very hard but the support I am getting from you all is helping a lot thank you again 😌

Roz49 profile image
Roz49

You do feel like that when you get your diagnosis , I was diagnosed at 49 with liver enzymes at 1300 , with the right medication you will start to feel better after a while, I hope you feel better soon.

Barns21 profile image
Barns21

I was diagnosed in February and have to say I felt very shocked and scared. Then I decided to see what the internet had to say..... really bad idea! I found the PBC foundation and have felt much better since reading medically sound information and advise. Hope you are feeling less worried and stressed x

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