Telling the kids

How did you tell your adult children that you had PBC?

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I have two kids. A daughter of 20 and a son of 13. My daughter is at Uni in England and my son is at home with me. Both of them knew that I was unwell before I got the diagnosis. They are both very smart, have very vivid imaginations and access to google!

Before I was diagnosed, I told them as much as I could about what was wrong with me. I said that my liver enzymes were not great and that the doctor thought that I had an autoimmune liver disease.

I was running to the docs and the hosp getting blood tests for about 9 months before I was eventually told that i had PBC. By that time, both my kids were as glad as me that there was a label that we could stick to the symptoms.

From there on, I told them as much as I thought they needed to know ... and it is pretty much the same story that I tell everyone. I said that I have a progressive autoimmune liver disease which is treatable but not curable. (I have not mentioned the cirrhosis word since the first day) I have told them that as long as I take the drugs prescribed, the disease will progress very slowly but that I would have to make a few changes because the drugs don't really treat the symptoms.

I told them that my drinking days are over, that I won't be able to do some stuff that I did before and that I might have to either stop work or go part time (I have really bad fatigue, really bad problems with concentration and memory and quite a lot of pain). I have told them that apart from that nothing has changed.

My son is satisfied with that.

I have discussed it in a bit more depth with my daughter - she is very clever and has access to medical journals through college. She looks things up and understands them better than me. All I have to do is explain how things apply to me in my situation. She knows that i will be honest with her because I try to be honest in everything.

We talk about it mostly in a laughing way if you know what I mean. We joke a lot about my memory - the kids think it's hilarious that I burn the dinner a couple of times a week. They love it when I talk to them when I am half asleep and they take advantage of it to get me to agree to things when I am not concentrating properly.

They also know that I am in bad shape financially because i don't get sick pay from work so they know that I can't afford a lot of things.

They have accepted my word that as far as I am concerned the big thing that has changed is that i am not as quick as i used to be.

My outlook on life is positive as a general rule. I try not to worry about things that haven't happened. As far as I am concerned, the doctors get paid for their knowledge. Until they tell me that I have something to worry about, I will just adapt to things as they are.

I get angry and frustrated because i want to be at work, I want to study, I want to be able to afford things. But the kids don't need to know that!

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I dont really tell my daughter a great deal (she's 22) and to be honest i dont think she's really terribly interested, too caught up in her own world!

[mumofthree]

When I was first told I had PBC Oct 2010 confirmed diagnosis jan 2011 - my 2 eldest boys neither were living at home - now 23 and 25 knew I was attending the hospital for checks for rheumatoid arthritis because of the pain I had been experiencing. However when I had the appointment with gastro - arranged by rheumo without my initial knowledge. I told them I thought the appointment was a mistake because I didn't have anything wrong with my stomach....thats what I thought gastro dealt with!! When the gastro registrar told me I had PBC I was in a state of shock and disbelief ...I read up on the intranet and was so frightened and believed I was going to die ...the registrar told me I could have 3 years. All I could think of was that I would not see my youngest grow up he was 10 at the time....I was in a bit of a state but did not tell them what I had been told ...what I said was that I had an autoimmune condition called PBC which affects my liver and that is what has caused me all the problems with pain etc. We have not really discussed it since...I am sure they will have read up on it and disgussed it among themselves but have not mentioned it to me. We are in touch a few times a week by phone and I see them every sunday for lunch..I have not told mentioned PBC to my my youngest as he does a lot of research on the internet and I don't want him scared...he knows I have joint, bone muscle pain and that I have arthritis.....osteo arthritis, osteoporosis has been confirmed by rheumo.

[WendyMarie in reply to mumofthree]

So, mumofthree, I too have read all this stuff on the internet & I am very frightened. However, I also read, that IF your body responds to the URSO, you will likely live a normal life span & may NEVER need a liver transplant. So, why did your doctor say you have 3 years? Did he make this prognosis after you had a liver biopsy?

[mumofthree in reply to WendyMarie]

Yes you are right about the URSO and transplant/life span. Its all very frightening at first when you get the diagnosis but with time it does get easier...honest..... I was diagnosed in Jan 2011 and can honestly say it has taken me this long to come to terms with my diagnosis. For the first year I went through a spiral of emotions and depression ... fear ... denial ... hopelessness .... did every little niggle mean I was getting worse ... the feeling of being totally alone, even with the support of family and friends with all the good intentions in the world there was no way they could really understand or know what I was feeling and going through ... it takes someone who has been and is going through PBC to really understand ...... I just wanted to hide myself away, if I didn't think, read or talk about it it would just go away. It was not until May/June this year(2012) that I plucked up the courage to contact the PBC foundation who were very helpful. It was through the foundations site that I found this forum and since then I have not looked back....I do not feel so alone....hearing of others experiences... being able to ask a question without feeling stupid......everyone is so friendly, supportive and willing to help.

The gastro registrar told me I could have 3 years on my very first appointment with the gastro team. That was before the liver biopsy and before being put on URSO. He told me I had PBC purely on the results of blood tests carried out by the rheumatology department who had referred me to them. He said that the blood tests had indicated that I had PBC. I asked him what exactly was it, what did it mean for me, is it something that would go away and what did I have to do about it. Thats when he said it was incurable autoimmune condition that affected the bile ducts in the liver and that I could have 3 years to live....He was so matter of fact and really tactless.....I was devastated..... He told me I needed more blood tests, an MRI scan, a CT scan and the liver biopsy.

My sister is a retired nurse and was very annoyed that I had been told in this way. I had gone to the first appointment alone but my sister insisted on accompanying me on my next visit to the department for the results of all the tests. I was in such a state when I went for the results my sister had to speak for me. On this ocassion I was seen by the consultant, my sister told him what the registrar had told me...... What a difference.....he was really lovely, he went out of his way to reassure me and to explain everything to me. He told me that he would give me URSO which would help slow down the progression of the disease......that it may never turn into cirhossis but if it did there was the possibility of transplant....he said that I had a life to live and there was no reason to suggest otherwise. 6 months after starting on URSO my readings had shown an improvement and a further 12 months after that they are almost back to normal, so URSO is definitely working for me.

Since contacting the PBC foundation and finding the forum I have become far more confident and positive about the future.....PBC is not going to get the better of me....I have a life to live and I am determined to make the most of it...

Keep positive, and try not to worry too much it WILL get easier.

Hope you had a Lovely Christmas.....and heres to a Happy New Year.

[WendyMarie in reply to mumofthree]

Thank you SO much for your reply. Hearing your experience of how well you are responding to URSO, makes me feel much better. I have my liver biopsy Jan. 8, 2012.

[mumofthree in reply to WendyMarie]

Good luck for the 8th Jan keep your chin up

[WendyMarie in reply to mumofthree]

Thank you

[EAJSWW]

I have 4 children between 10 and 18 I was diagnosed 11 years ago.

My children have been more or less brought up with me being unwell at times. I think not knowing is worse than knowing, kids these days are extremely bright on the whole and as said before Google can be a torment if the correct facts aren't given.... I would hate to think my kids thought that I was ill with something that was going to kill me tomorrow.

I suppose it depends on what sort of family you are. In our family we talk openly about everything...

We talk about death as just another process everyone goes through as for us it is... it's not morbid, it just is... none of us believe in an after life etc... so we try to live every day as best we can. Illness is another process, we all get sick sometimes, whether it be a cold or something worse, we pamper ourselves a bit, but we get on with it. If you let a progressive illness take over your life, you could be a long long time miserable. For me I try to LIVE, I think it's a great lesson for kids younger and grown up.

I have let all my children read the PBC Foundation compendium so they can see why I have certain symptoms, it lives on the bookshelf in the lounge. This works for us. But each family is different.

[Magnolia]

I wrote a letter because they are grown and married with children of thier own. I began by saying that I was not termial, and I was not dying, but that I had an autoimmune disease of the liver, that could lead into cirrhosis. I had a biopsy in 97 and another in 2003 and never told them, until this year. I had been itching so bad, I had to find others who had my problems and see how they dealt with it. My Dr. had said I didn't have to worry about my children inheriting this, but I found out different, while on this site and some others.

My daughter was the one I most worried about, so I had her to come over. She was upset, and I kept telling her, I'm only crying because you are. She said the thing that upset her the most is that I had the biopsies without them knowing. On the first, I went in on my own, then called my husband to come pick me up afterwards, without telling him about it. He is not the type of person you can lean on for verbal support, although he will do anything to help me. I just didn't want anyone to know untill I knew it wasn't cancer or anything. I didn't see the need in them having to think or worry about this disease untill I could no longer hide it from them.

Thier Father had committed suicide and they had had enough drama in thier lives. But they are okay with it now, they know I take a med that is slowing the progression down, and now they know what to watch for, in thier own health. I'm sure it depends on thier age, what you say to them.