I live in Miami, Florida. Progressive state wouldn't you think?
So I went to my eye doctor for a regular exam. Told him I had PBC. So he asks what's that? I explained Primary Biliary Cirrhosis. Had to explain it had nothing to do with cirrhosis like in drinking. Just wanted to make sure my eyes weren't too dry.
Next gem out of his mouth "So is this going to kill you?"
Very upset at his remark. Just wanted to share. Don't know what any of you will tell me as to how I can feel mentally better after hearing this from a doctor.
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Dolly67
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Hopefully the name will change later this year and that may remove some of the prejudices. We know that many of us we will die with our PBC and not because of it and as to his stupid remark, if it helps you at all, life kills us - nothing surer than death and taxes. Just think of the taxes your doctor must pay !!!
(Benjamin Franklin (1706-90) used the form we are currently more familiar with, in a letter to Jean-Baptiste Leroy, 1789, which was re-printed in The Works of Benjamin Franklin, 1817: "'In this world nothing can be said to be certain, except death and taxes.")
I hope my flippancy will help put a smile back in your heart.
As to the dry eyes, I get that and use dry eye drops - at the moment I am using one made by Optrex, I assume they are available in the US, I am in the UK.
I'm in the UK, and whatever their wonderful expertise with regard to the eyes, I would never ever think of my optician as being in the same league as my GP [some of the 'opticians' in £-shop-type places, here, are - I think - just well-trained instrument readers, who quickly pass you on to the real opticians if any reading triggers an alarm]. AND, as lovely as he is, I know, that I know, far more about PBC than my GP.
So: you are an intelligent, aware, well-informed human being, who is also an expert with regard to your own condition; while your optician is just an optician. You are also a caring, empathic and emotionally aware human being, who thinks carefully about what to say in delicate situations; I would guess your optician fails on all those counts.
So: give yourself a pat on the back and remind yourself that intellectually and emotionally you are a Titan compared to this pygmy.
As for PBC, as so many people on here say, we will probably die with it, not of it. If the dry eyes etc start, it's Sjogens, not PBC, it's just that they often happen together, but you won't necessarily get it. In future, maybe just say you have an autoimmune condition, and you are also 'at risk' of Sjogens (not sure of my spelling); I don't mention PBC if I can help it, as many nurses, and even GPs don't know or understand.
I was surprised that both my dentist and optician knew exactly what PBC is but a nurse on the ward I was getting a scope test asked me to remind her. In fairness that is all people have to say. A quick google tells a lot. Seriously though, what is not going to kill you? We have to die of something stupid thing to say, the key is to LIVE while your alive. Don't let the Ignoramus get you down. Keep smiling x
An optician is very unlikely to know anything about PBC unless they know someone with it. As others have said you are more likely to die with it not from it. Listen to the experts
Bit incentive is putting it mildly! The truth is pbc can be life shortening or life threatening but this depends on the severity ....how old you are when you get it etc.you are bound to be worried but as I always try to think there are many other things that could get me so its really not worth worrying about.I was 36 when I first got diagnosed. ..had 3 children and a new premature baby.all I could think was please god let this not be liver cancer...how would my husband cope!!!!wlith 4 little children if I was gone!!!!so the diagnosis was a relief for me.....I would all being well be okay for my kids.16years on yes I do suffer pretty bad symptoms from pbc and its been very difficult to manage beinga mum but they are all doing well despite my illness. So all I can say is think...glass half full. ...and do your best to enjoy life to the full. Best wishes. Cazer.
An optician asked me what medications am I taking, I said Urso, he said that's not medicament. So I stopped taking it for some months. Who was stupid? Me, of course. By the way this handsome man made by chance operation on my partner, and he see now, so he has good hands, though not much brain
Don't worry, it happens seldom, that people understand anything, it's rather our own (and here in the community our common) problem. Don't visit too often this opt!
Better go on beach here in cloudy Hungary I think of You being there in a happy spring, what I wish You warmly.
I wish they would change the name of the disease as of yesterday. Its so embarrassing. Even if you explain to people its nothing to do with alcohol you still get the "are you sure look" from them. Bad enough having PBC without the embarrassment.
Well eventually something will bring on our demise but it is said that PBC patients tend to die with it, not because of it.
It is true that for a few PBC can become bad but that is why PBC patients are monitored with regular blood checks and various other tests if a doctor deems might be worthwhile (ie scans).
It is highly unlikely that an optometrist/optician would have heard of PBC unless they have encountered other patients or know of someone with it. I went to my dentist with my daignosis back in 2010 and he actually looked it up online whilst I was there and never made any irritating comments. I have since said to him when routine x-rays were being done in the practice last year on all adults that I would decline as I took the stance even more since diagnosis that if something doesn't seem necessary then I won't be having.
I used to have the same nurse in another GP practice (I am in the UK) I used to be registered with ask me how much I used to drink on the few occasions I had to go to her for bloods. I got fed up on the 2nd occasion and just said nothing. I was thinking how ignorant she was! Moreso because I am sure if a patient presents at a surgery to a nurse in this case and some diagnosis of some health issue is not something familiar then that nurse would remember it from before even if she/he cannot put a face to the patient.
I've not been for an eye check for some time. I started experiencing a bit of blurryness not long after my first child was born. I put it down to working in conditions of fluorescent lighting and no windows and also reading early computer screens andthen having to look at things in the distance. Over the last nearly 30 years my eyes have never changed, still the same glasses that I do not wear all the time for distance. My optician agreed with me several years ago when he asked me where my glasses were and why I wasn't wearing them when I went to see him aas I required a new pair as mine were worn. I said when I wear them all day in the sun in summer (I have always bought Reactolite lens but cheaper now to get the Transitions) my eyes take a very long time following to come back into focus in distance so I find ti best to wear when I need so always have with me.
I didn't have PBC when I last went but at some point when I do I am tempted not to inform him that I have PBC just to find out what the outcome is. I know one thing, I will not be having any horrid bright yellow drops in my eyes for the glaucoma check (you have gone 40yrs) again as I was blowing the stuff out of my nose for days following. I'll ask for the puff test instead for this.
Mentioning I have PBC to the people in my life, they all think the cirrhosis part was due to drinking even though I have never drank. This is frustrating when they give you the side eye. Even when my gastroenterologist told me I had this I thought I would be dead too in a few years, the dreaded word CIRRHOSIS. Thankfully I have found this site with the moto: you die with it not from it.
Hi Dolly67, there is a center for liver diseases at University of Miami with some well known hepatologists that DO know all about PBC, Google them & good luck!
Hi Dolly67, First of all was he a doctor or vet. Joking apart very little is known about PBC so I suppose a little lack of knowledge is understandable. I hope all goes well for you.
Just thought I would put this in to make.you smile. There I am on a liver ward, pipes and drains comming out of every orrifice and a student doctor ask me will I answer a few questions " What have you had done " me, always the joker replied I have just been circumsised she then writes this down. Sorry if this sounds a bit rude but it makes me still smile. Have a good day all...
Hi...I live in Binghamton, NY and can't seem to get a diagnosis from my gastro. or G.P.
I don't have symptoms and blood work is normal except my Tbili is slightly elevated 1.2, fibrosure bloodwork was normal and so was the ultrasound. I work in a lab so I can test my blood as often as I want, so I will keep an eye on lft's until things become more abnormal. If it wasn't for this site, I would know very little about PBC. I think the doctors don't know much about it either (at least in my area). In fact any doctor that asks a patient "is this going to kill you" is an idiot! Just be glad he's your eye doctor and not your liver doctor.
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What is the timescale for you for the review of the urso meds?
How did you get diagnosed? 
Autoimmune Liver Disease No one to talk to...
HAPPY CHRISTMAS to YOU ALL
