The word Cirrhosis

[Brummi]

I just read a post about if the word CIRRHOISIS how if it comes up in conversation people think of alcohol and this makes us feel a little uncomfortable. This is the way I deal with it, first I explain the disease and the problems that come with it. Once that is done PBC is mentioned the quickly I explain the word is Greek and means yellow-orangish . The comment I thought it was booze does come up but now you have educated someone and taught them some Greek language as well. Go forth readers and educate the world...

[GrittyReads]

Hi Brummi,

I don't mention PBC if I can avoid it - especially as I still don't consider myself to have it (I only test +ve for AMAs, have done for 23 years, with no symptoms and consistently perfect lfts and ultrasounds).

However, I have found that I occasionally get picked on/sneered at for not drinking (I stopped when I found out about PBC) whereupon I tell people I'm at risk of an autoimmune disease, where the antibodies attack the liver, so I don't want to do any more damage. If they say 'Oh one won't hurt' I say it's progressive and incurable.

With nurses (who in my experience, so far, have never heard of PBC) I go through all of the above before mentioning 'PBC' but when I have to say the full name I usually add something like: 'and as we know, cirrhosis just means scarring'.

It probably doesn't make much difference to the worst mindsets, but like you, at least I've got my alternative explanations in, and maybe educated a few, before the dread word has to be mentioned.

NB I say it all in a gentler, lighter tone than this probably sounds.

[Brummi in reply to GrittyReads]

Hi, It is always interesting to hear how other people deal with the subject. I first went to the hospital in January 2011 and was officially told at the end of Febuary, however I was far more advanced then first suspected and had my TX in June 2013. I was never a big drinker so going out with friends is no big deal, sometimes I end up being nominated driver. The other point to put across to folk is the difference between PBC and a liver damaged by drinking , but the end product can be the same , a transplant.

[Bolly in reply to Brummi]

I've had liver cancer caused by HBV, have HBV and AIH and cirrhosis. I just say I have liver damage and leave it at that. If I say I've had cancer everyone assumes it was breast cancer (as I'm female) and out comes the sympathy card, lol! Its true their reaction would be quite different if I said 'liver cancer' rather than 'cancer'.

[Brummi in reply to Bolly]

The same laterial thinking at the word cirrhosis, was I a heavy drinker. I don't drink.

[PCBnPBC]

I was in A&E (NOT NEWCASTLE!!) suffering with an episode of H.E. (my reason for being there was a fall of 8 foot) the senior nurse claims I was intoxicated, but did not smell of intoxicants !! so the NURSES thinking went : End stage Liver = boozer = boozing is why he appears drunk! he is pissed . This in a hospital where I was originally officially diagnosed with PBC, had attended as in patient for gastric bleeding (10 days) , had had ultra sounds, with description of my full Cirrhosis, and they are taking me to court over using bad language after no treatment what so ever after a 4 hour wait in A&E, I was so sleepy and in so much pain after I, my daughter and a random member of public asked for a trolly for me, (no trolly available) I lay on the floor! was asked to return to my seat, I did without issue, then 15 mins. later could not stand it (pain and sleepiness) and returned to the floor, when they asked me again to return to my chair I explained I simply could not, they kept on at me, I asked them to call my wife (I was too exhausted to continue to attempt to explain, they replied I have no interest in speaking with your wife) at this point I went into full on H.E. mode, used the F word and now have to defend myself in a 2 day court case! so convalessence after TX (Nov 14) is on hold whilst I fight my case AGAINST this pathetic excuse of an A&E dept.

Sorry if I was ranting just then, it is simply driving me mad, I have plenty of support! latest is that a QC has offered and we have accepted, his free services to defend me in court! at about £1,000 per hour, that is some £20,000 value of his time, he is offering because he is so offended by the wrong and injustice he sees......... I could do without this extra trauma to be honest, but I simply refused to apologise to the hospital who I strongly believe were in the wrong. So they take me to court (more accuratley the PCS do,) they must believe it is

1 in the public interest, and

2 they have a better than 50% chance of winning....... as the rules state.

Court date is May 18th. I will let you know the outcome!

Anyone else got any H.E. stories? I have plenty, and would be interested in hearing others and sharing some of mine if there is a wish to do so?

[janerayne]

I'm jane 46 had liver transplant in 1989 ..I now have cirrhosis (non alcoholic)..interesting point bout the word cirrhosis , I always find myself saying non alcoholic after the cirrhosis. .u sound like a positive guy ..keep up the good work 😊