Hay to all.im new herr just got the phone call last week, diagnosed PBC. Had symptoms for two yrs,. Tired. No sleep.anger issues..what now

[dbjdid3]

 Do I tell my kids? My friends. What is coming..I'm tired all the time.i have had symptoms for a couple yrs.but blood tests just revealed why..kinda freaked out a bit,any ideas 

[Hidden]

Hello dbjdid3.

I was diagnosed with PBC back in December 2010 at aged 46.  My children were by that time grown up.  For me my path to PBC diagnosis came about due to me starting to itch badly early 2010.  I did have fatigue at the time but never thought much of it due to full-time working and being a widow for many years having to raise my children alone.  Just thought I was run down.

Afte I started taking urso Dec 2010 at some point during 2011 my fatigue did vanish and so far so good.  I do get tired due to broken sleep at night through itching.  The itch has subsided somewhat in that I tend to feel it late at night these days.

I think you need time to make how you feel change a bit.  In the early days it can be daunting as you can wonder how everything is going to go and how you are going to fair with having PBC.  Only time moving on can alter your views.  Yes we will always have PBC it seems but it takes time to realise that it might be something we just have to continually put up with and that we can lead a relatively good life.

If you've not heard of another site called Liver North (they are in the UK, Newcastle) then check it out as they have their newsletters online you can trawl through and also they will send you free of charge their dvd all about PBC.  I got one several years ago now (my husband watched it all, I didn't).

Now I've only really told a very few select friends and also my family know.  I have found with family some might understand, others just think you pop a pill and you are OK.  This is how it is for me.  I'd only met up with my husband 16mths prior to starting to itch and we'd not even got to our first wedding anniversary in 2010 when I was itching.  He didn't take it seriously during 2010 when I was having blood test after blood test, then a scan and then hospital appt in an attempt to find out what was going on.  It was only on my frist visit back to hospital following diagnosis (the consultant relayed the diagnosis to my GP for him to inform me and write the urso prescription out) that the consultant mentioned a bit more about PBC and I knew that PBC could lead to liver transplant for some but never told my husband this, the consultant actually shocked him when he said this.

Life will have ups and downs following the diagnosis as it is something that you have to deal with (ie blood checks, etc) probably for life as well as taking the tablets.  I didn't fair so good early days but then over time I just started to see another year roll by and myself didn't seem to feel much different.  Yes there are things that I doubt I'll ever do again, minor things I used to enjoy (ie cinema at night - the itching nowadays won't allow me to sit still for very long so I am on the go most of the time) and also I do get tired later in the day if I've had a bad night due to the itch but on the whole I am pretty much as normal as I used to be.

My philosophy with having PBC is to enjoy life now and dont' think about what this might become as it might never do so to me that would be unnecessary worrying meanwhile.

I try to eat healthily and look after myself and basically that is all I can do.  My bloods have improved over time and though they have never got back to normal they are still said to be OK.

[dbjdid3 in reply to Hidden]

Thank you for your kind response. I am still learning as much as I can googleing everything.but it does finally explain several things.

[Hidden in reply to dbjdid3]

Hello again dbjdid3.

Sorry I forgot to put the link on for Liver North for you.  Here it is below, you will see the PBC dvd on the Home page there.  Personally I'd not over do the Googling as there are some sites that in my opinion can be quite scary.  I found out about PBC originally via a library ref book and then looking online I came across PBC Foundation.  There is also British Liver Trust in the UK and on their site you can download and read their leaflet on PBC.

livernorth.org.uk/

[butterflyEi]

Hi dbjdid3

I think saying anything to the children depends on how old they are.  You do not say if you are on Urso yet but you will find, provided you respond well, that Ursodeoxycholic acid (URSO) will slow down progression of the disease.  There are other alternatives but Urso seems to be the one that is tolerated well by the majority of PBC sufferers.

If you have not already joined the PBC foundation (free to join) then follow the link in the above margin and you will find a wealth of information on their web site.  They also have leaflets for professionals and the lay man which you might find helpful when dealing with people. I have not found my sisters supportive when telling them of my PBC and friends do not understand because I look so well however I have wonderful stepchildren who are amazing in their attitude towards me and the condition.  I am also lucky to have a caring husband who is a great support.

If you are on face book there are several pages on PBC for different countries so depending on where you are in the world you will be able to keep in touch with others.

Some PBC information on the web is now out of date although much has not changed since the middle of the last century however the best bit of advice I read in the early stages was that you are more likely to die with PBC than because of it.

Take each day as it comes, try to conserve your energy but at the same time try to exercise and keep as fit as you can. 

best wishes