PBC

[bink]

Just returned from visit to Mayo Clinic in Jacksonville , Fla . The doc says i am falling into a group that the Urso isn't helping and in the next 2-5 years i will need a transplant , just wondering how many others this has happened to ?

[Annflanagan]

Hi, im a bit shocked to here that,as i thought the urso worked for everyone, have you been feeling worse in yourself or had that been found out with a blood test, dont mean to be nosey im just taken a back here, do you mind if i ask what stage you are, how are you feeling about that news yourself

[bink in reply to Annflanagan]

Hi Ann ,

I had been on the Urso for 2 years and was feeling good then the end of june first of july i got the worse fatigue i have had yet and the whites of my eyes became very yellow and i was having pain , tenderness and swelling in the liver area so i went to my GI and he done blood work and also another liver biopsy ~ when it was first diagnosed i was late stage 1 early 2 then when all this happened the biopsy showed stage 3 . Umm it has been a shock and life changing thing to hear as i have children one who is 23 but also a 13 year old at home . i also have days that it really hits me hard but i have a very loving supportive husband and family and this seems to help alot but my mind has so many whys and questions and fears of the unknown future. i just tell my self god doesn't give us any more than we can handle i just wish he didn't think i could handle so much ~ lol but i try to stay positive

[Annflanagan in reply to bink]

i think thats the best way to be, it can get on top of you very quick and get down very easy, yea i often think that myself iv enough now give it to someone elce lol but then you cope, im a bit like that myself wondering what will the future have in store for me, but then ill cross all those bridges when i have to, so far i seam to be stable enough im stage 2 been that way for 3yrs now, i get scans bloods ect, every 3 mts so fingers crossed it stays that way, Ann

[nellysarmiento]

Hi I am sorry for that news, hope you feeling ok, I am told only 4 weeks ago i am positive for AMA, not seen anyone or discuss it, now thinking back i have some symptoms, itchyness, fatigue, change of skin in my face rashes.

I wonder whether this is telling the stage.

I had enquired to Mayo clinic, however they did not tell me fees, can you help me with this, I live in England and I supposed might be very expensive.

good luck

NS

[bink in reply to nellysarmiento]

Hi Nelly ,

I am hanging in there ~ it is very life changing and shocking news but i try my hardest to remain positive . I do have some itching but so far i have been able to get by using benadryl and my skin has become very very dry and i noticed what looks like i have been sunburned and then peeled type rash over the liver area and some on my chest . i have been told the only way to tell the stage is a liver biopsy and that is what they did to stage mine . The Mayo Clinic in Jacksonville Florida is where i went and i was there as a out patient for a week for testing , i only have Medicare at this time so i was left to cover expenses but i did find out that the hotels will give you a Mayo discount if you tell them you are going there i found one place that was 68 dollars a night but ended up finding a really nice one one exit away from the Mayo and it was 75 dollars and some change but they also had a shuttle that took me to and from my appointments so i din't have to drive or pay to park . they do have some hotels on the mayo campus but they are really expensive and then they also have something called the gabriel house which is where you stay with others but have your own room then share a kitchen and tv room i just didnt want that unless i absolutley had to i dont want to be around others when i dont feel well . all in all it was about 500.00 dollars for the room from Monday till Saturday at 11 am then you have to figure your meals and things to , i will say the place i stayed had pretty much everything close by that i needed . try asking the Mayo Clinic to send you a map of the Clinic and hotels near by . hope this helps .

[nellysarmiento]

Thank you, yes your information is very helpful , I hope I will see someone soon

Take care

NS

[Kate50]

Hi Bink, I also have been told that for me urso isn't working and will therefore require a transplant, I have been for an initial appointment at the transplant centre but because the level of bilirubin in my blood goes up and down it was decided to wait until it goes up and stays up and until then I see my consultant every eight weeks and have regular scans endoscopes to keep an eye on things. I think the problem is that urso is the only treatment for pbc so when it doesn,t work there isn,t anything else to try.

[bink in reply to Kate50]

Hi Mops

Where did you go for your initial appointment ? , i went to the Mayo Clinic in Jacksonville Florida and met with the pre- transplant team , i am awaiting a letter from the the Dr. i seen as to my continuing care i do have access to my records from them on the internet and do know my blood work came back some high and a few low and that the MR/MRI and The scope they did seem to read well but i will know more once i receive my letter , i was to see the Dr. before i left but at the last minute the night before they scheduled the scope so i was unable to make the appointment with the Dr. . i am thinking thats what i will end up doing as well , i believe they will have my Dr. here keep up on things and report to them . yes i agree we don't have anything else when the Urso stops working . hope you are doing well

casey