35 yr old from USA with PBC

[JenniK]

Hi was diagnosed Thursday with PBC from bloodwork I will be having a biopsy to determine if the diagnosis is correct since they first told me it was Lupus through bloodwork. I have a 2.5 yr old at home so the word LIVER AND CIRRHOSIS is a little frightening.

[breekins]

Yes it can be scary especially if you happen across out dated material on the Internet. Everyone is different but this is a slow progressing disease. Just make sure what you read is up to date and you will probably not experience all of the different symptoms. Check out the PBC foundation. The pamphlets there really helped me understand it more and explain it a little better to my family (hubby and 3 girls a 15, 12, and 5 year old.

[JenniK in reply to breekins]

Thanks for the reply!

[SimbaTutor]

Hi, JenniK. Yes, this disease can be frightening. We are all learning to take it one day at a time. I was just diagnosed in June after a biopsy the end of May and I also live in the US. The bloodwork for me also showed I have Sjogren's syndrome, a common companion with PBC. You will find that individuals here will support you with care, concern, and information they have learned in their travels with this disease. I am glad you found this site.

[JenniK in reply to SimbaTutor]

Thanks for the reply!

[Bogindour]

Hi jenni, just because it's called PBC doesn't mean you actually have cirrhosis yet. The PBC foundation are currently asking members their thoughts on championing a name change for this very reason.

Being diagnosed is a scary time, and I remember it well, it was a bolt from the blue, totally unexpected and especially as a young man I felt very alone.

But that was in 2006, and to all intents and purposes I'm still 'healthy', I don't look or act ill. Sure I get itchy (it drives my wife mad) I get fatigued sometimes (I changed my job and my work pattern) I get dry eyes and I experience pains and stiffness in my joints on occasions.

Since diagnosis I've decided life is worth living, I try to do something out there each year, I've ran 10ks and half marathons, I've completed biathlons and hand built our own home, and I've passed a very strict medical to become a specialist police officer.

I take Urso daily and have gone through periods of daily, weekly and monthly blood tests. I'm now on bi annual blood tests and hepatoma surveillance and feeling more positive.

Things to remember though, PBC effects everyone differently, and the degree of the 'symptoms' do not necessarily reflect the level of progression of liver damage.

Chin up, and people are always happy to chat.

Dave

[JenniK in reply to Bogindour]

Thanks for the reply.

[susanantovil]

Hi JenniK, I also live in the USA and I have lived with PBC since 1995 and I am still here. I understand completely what your feeling, we all do but take a deep breath and relax. This is a very slow disease and if you take care of yourself , listen to your doctor and take your med's you will live a very long life. The first thing they told me was no alcohol no smoking . Your diet is very important along with vitamins. If you don't watch your diet and gain to much weight you can possible get a fatty liver disease. That just puts more stress on your liver witch you don't want. I have had 2 liver biopsies but that is part of the course. I don't know what part of the states you live in but I live in Massachusettes and my doctor is affiliated with the Brigham and Woman's Hospital which I love. Another thing the doctor said not to do was, do not go to the library and look up this disease because the material was old and would scare the hell out of me. I just loved that guy, great sense of humor. Oh forgot to mention about PBC and a Thyroid disease are brother and sister which I have. Just another bump in the road and that can make you tiered too but again just take your med's and you'll be fine. There are worse things in life than PBC, take it from me. My name is Susan A. Keep smiling :-)))

[JenniK in reply to susanantovil]

Thanks for the reply I live in Orange County NY.

[sap7649]

Yes, at first it can bring u down terribly. Also, be careful who u see has far as a DR , not all physicians have good bedside manner and don't give positive outlooks they think medically because they r wired to think this way.

Early on if I had the doctor I have now it would have changed my whole way of doing things. I was diagnosed at your age maybe 38 years and I still had a young son at home. I continued my life but they didn't give a bright outlook for me. I've gone through a lot went thru a divorce, my son who is doing great married the love of his life. They both are successful live in New York, the way my ex and I reacted to this disease was crazy. They scared us to death , I felt I was going to live a long life , dear lady I am now with a wonderful man who tells to enjoy everyday and have a beautiful life. I am 54 years young. The PBC has stayed stable I was told a few months ago that I am in early signs of cirrhosis , it's taken 15 years , so my attitude now is I've made some diet changes still workout . I still work full time , workout some and finishing classes for my bachelor

Degree in business.

What I have learned from this illness is a silent disease everyone that see's me say u look great u don't look sick. What brings on illness are stress, traumatic situations in our lives. Smoking, heavy drinking, eating the wrong foods, not everybody system works the same. Some people can do all the above and never have any problems.

Keep focused on yourself try not to stress in life I can't stress this enough this actually exacerbates your symptoms.

Most of all spiritual strength is also something I won't leave out I think what ever your belief is thank God for allowing us to live another day.

Good day

Have peace!

SP

[JenniK in reply to sap7649]

Thanks for the reply.

[Elvingtons]

Hi…I am 34 Years old and was also diagnosed last week with PBC from bloodwork…I live in the US as well…I have a 20 month old and a 4 year old…I am having a liver biopsy on Sept the 8th to determine the stage…I thought I was pretty healthy no issues at all until I got this itch, fatigue, and dry eye all in the same week…I have no idea where this disease came from for me…all my other blood work didn't have an answer of why I would get this…I am beyond scared to death…I started the medication last week as well…have a bone density test in the morning…I am worried that all is going to go well and then all of a sudden in 10 to 12 years it is going to change and things will get a lot worse…my kids will still be very young and I am wanting to be their mom for a long time…I could see getting this disease at the age of 70 to 80, but getting this at 34 can my body live with this for another 50 years??

[JenniK]

@elvingtons that is my main concern as well. I have not gone to see anyone just yet but have some appointments this week. From everything I have read as well as have been told it's totally unknown because everyone's body deals differently.

[Elvingtons]

@Jennik….I would love to keep in touch…I am headed to my bone density test this morning…just got a call that my thyroid, lipid, and vitamin d test were all clear and good…the itching is a little worse to day than it has been in the last week…please share any info with me that you find

[JenniK]

Yes for sure! I am located in NY I can give you my personal email! [e-mail].

[Betsyjc3 in reply to JenniK]

I'm in Woodbridge, VA .. two months new to this diagnosis and this not super fond of Urso.

The side effects for me have lessened, thank goodness. I have one more month to go before I get my first labs since being on the meds. I'm hoping for only good news.

Good luck, Jenn

[JenniK in reply to Betsyjc3]

Thanks! You too

[Elvingtons]

awesome…mine is [e-mail]…I got my bloodwork back yesterday and it seems that my thyroid, lipid, and vitamin D are all clear for now!! still waiting on bone density test results from Monday…when is your biopsy?? and did your test say Lupus positive??

[JenniK]

No biopsy set up yet have rheumatologist appt today and gastro and primary appts tomorrow to make appts for all those tests. Apparently my lupus came out negative but that is what they have been telling me since 2009.

[JenniK]

Thanks! Are you in the US?

[Mumdownunder78]

Hi, I'm 36yo with a 7 month old and 3yo in Australia. I have sent a join request for Australian PBCers but nothing yet after a couple of days...... Feeling scared and isolated having this obscure condition no one's ever heard of.....

Pnt1409 where are you located?