I AM SCARED!!

HI , MY NAME IS RUTH, I AM 42 YEARS OLD, HAVE TWO SONS AGES 17 AND 11, AND WAS DIAGNOSED WITH PBC A COUPLE OF DAYS AGO. I LIVE IN MEXICO AND THERE IS NO SUPPORT GRUPO NEAR BY. THE FUNNY THING IS THAT I AM A PEDIATRICIAN WHICH I JUST CASUALLY DID SOME ANUAL BLOOD WORK AND FOUND MY LIVER ENZYMES VERY HIGH. AND THAT BROUGTH ME TO A GREAT AGONY TO KNOW JUST WHAT DID I HAVE, EVEN THOUGH I AM A DOCTOR ITS STILL VERY SCARY TO UNDERSTAND THIS ILLNESS. BUT AFTER READING SOME STORES AND BLOGS WITH PEOPLE WHO ALSO HAVE PBC, I MAKES ME FEEL MUCH IN PEACE. I KNOW I WILL HAVE TO DEAL DAY BY DAY WITH THIS, BUT WITH YOUR HELP , IT HAS TO BE MUCH EASIER. THANK YOU ALL FOR THIS COMMUNITY.

25 Replies

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  • Hi Ruth

    You are so right how supportive it is to have this place to hear the stories and real experiences of others. A dx of a chronic disease IS a lot to take in mentally- " even if" we have scientific understanding or not. I am 65 and 2 yrs in to my dx.

    One very positive for you is that you will benefit from the research and quicker advancements that can be made now with technology capabilities. I do believe they will be able drill down and "shut off" the auto immune attack.

    Take things as they come and get support here as needed. I find great solace in reading others posts.

  • Hi, any illness is scary some more then others. Of course you will have to make a few changes to your life style but nothing major. I know people that have had PBC for 20 years or more , the strange thing is it advances faster on males. Take any problems one by one as they happen don't look for things on the internet . Try to stay stress free as possible, PBC affects people differently so what happend to may not affect you. There is a wealth of information on here and a lot of good people to help you. Take care..

  • Hi Ruth

    Now I know doctors can be sick.lol

    I'm a medical lab technologist as well and I was diagnosed accidentally in the work.lol. I used to party hard before I was diagnosed pbc..one day, one of my friend at work told me to run liver panel just to check my liver and I did..freaking, it came out high abnormal which I didn't not believe the right moment then I ran it again after 1 week again came out abnormal after that I went to gi dr...its been 3 years now so far so good..

    start urso as soon as possible and try to live normal and Healthy life style

  • THANK YOU, EVEN BEFORE THE CONFIRMATION OF PBC, I HAVE BEEN WITH URSO SINCE A MONTH NOW. THANKS SO MUCH FOR YOUR REPLY

  • Have you already done your liver biopsy? In USA liver biopsy is like most to confirm pbc where as in England it's not!

  • IN MEXICO ITS NOT A PRIORTY. :)

  • Not a priority with my GI. He is doing more fibroscan now as opposed to biopsy.

  • Ok,

    Pbc is very strange and rare disease.. pbc and aih are mostly seen in white in European descendants 10% of their population, I'm am Asian, only 0.03 %population has pbc and I'm one of them imaging how lucky I'm on top of that I'm a male 😁..

    Within a 3 years after pbc, I been diagnosed with hypothyroid, reactive hypoglycemia and sjogren syndrome which are very common with pbcers and it also depends on individuals. you might not get this problems if you don't panic!

    I have a college friend from Mexico City. she invited me to there many times and matter fact we just talked about it a week ago. If everything work out I will be there in December for week I heard its beautiful!! 👍🏼👍🏼👍🏼

  • It is. México I a great place to visit.

  • Do you live in Mexico City as well!

  • Hi, my name is Gail. I live in Texas. I too was recently diagnosed. It's very scary to me but I'm trying to calm down & research & understand this disease to the fullest. Knowledge is power. Even though incurable, we can stay on top of it. Hope all goes well for you😊

  • There is a lot of good information on the PBC foundation website. All you have to do is sign up and no charge. I was diagnosed 3 months ago with stage 3 severs fibrosis. I am 62 years old. I think I have had this at least 20 years. I have been on the Urso 3 months and my liver function tests have improved quite a bit. I feel pretty good, not too tired and grateful to say no itching. I bet you'll be fine.

    -Pam

  • Well you know now that you are not alone. Sorry you have pbc but glad you found us. Take some deep breaths and try to find your new normal. I was diagnosed about 3 weeks ago. I have told my loved ones and now on to the business of living. One day at a time..

  • Thank you for your post. I am sure the Foundation can help.

    Once you join, you will be able to access information in Spanish, if that is more helpful.

    We run a helpline where you can ask specific questions and make sure you are receiving the best possible treatment. For people outwith the uk, we can do this on Skype.

    Welcome.

    Robert.

  • hi please don t be scared i am 9yrs into pbc and honestly dont feel any diff to wen first diagnosed keep healthy diet little bit exercise regulars bloods and urso meds im sure u will be fine worrying will create other illness good luck x

  • Hi it is a lot to take in and as you are a doctor must be even harder to come to terms with. I have no support group near me but find that this site helps a great deal. I also have a good consultant even though I only see him once every 6 months he answers all my questions and my GP is very good even though he is not fully aware of PBC facts. You will find help and reassuring comments on this site. Good luck. Hope your Liver levels settle and are not to high.

  • Be sure to follow with specialist.... it is scary but we are here... this group has really helped me

  • Take the medicine, keep positive and exercise as much as possible. There are people on this site who have had PBC for many years and are still having a good life.

    And, as so many other people have said, look at the PBC Foundation site.

  • Yes, this is a very bumpy ride. But, we have to learn to live with this thing called PBC. If we don't then we let this PBC have the upper hand. Like myself for instance, I've let the stress of daily living & things that are out of my control get the best of me recently. So, Im now fighting to get back to "normal" yet again. It happens to us all, but we must bounce back right? You'll learn to listen to your body. When it says it's time to slow things down, you must slow down. I usually listen, but things have really been piling up around me. Time to stop & smell the roses to get back on track.

    Stay strong❣️

    Shannon

  • YOU TO. GOD BLESS!

  • Hi. I saw on one of your posts that you go to Indy for treatment. I'm about 3 hours from there. I need to get a liver biopsy but I'm so frightened. There's no way I can lay still for something like that...I don't know what to do.

  • I've had a few liver biopsies since my twenties. Could never quite pinpoint what the problem was. Had digestive issues since I was around 18-19 years old. My last biopsy was in 2012 when I was diagnosed with PBC. It really isn't a difficult thing honestly. If you mention that your uncomfortable with having the biopsy done the might give you some sort of sedative to calm your nerves. I always had my sister in law with me for these. I think the most difficult part was after when you must lay on your side fit for hours. Tri to find a good movie while you wait our have a friend or family member read with you. Anything to keep you mind if off what's happening. I will no longer need the biopsies due to my being at stage 4.

  • Hi

    We all stood in that place where you are now . The shock of having something that is so rare , yet you have it despite being generally healthy ..

    thinking of your family , anxious about the future .. wondering if you'll see your boys grow up and have families of their own ..

    This will last for a while until you can get your head around pbc..

    but you will conquer that anxiety and you will take charge of your condition . There's s lot you can do to maximise your health . Stay fit . It helps with the fatigue u will experience.

    Good nutrition - eat well and varied diet . Cook good food and watch your fat Intake

    Some people have alcohol .. I've chosen not to and it gives me a sense of control .

    Take your meds and stick to a schedule so that you dont forget to take them or get busy ..

    keep some in your bag for when at work.

    Take short breaks throughout work day if possible and stop for lunch .. it all helps

    Don't keep it to yourself .. share info with your family

    They want to support you ..

    use yoga , hang from a tree , pray or dance .. whatever inspires you and makes you feel good

    This group is here to support you

    You are stronger than you think

    And soon you will be an expert ..

    💃🏻😊 .

  • Such nice words . You are so right. Thank you sooooooooo much.

  • Welcome to the PBC club Ruth. You will find understanding and support from this group. The Pbc foundation are a source of accurate up-to-date information so make sure you join up. I was diagnosed over 3 years ago and was frightened and confused but I understand the condition so much better now thanks to this group and that is empowering. Research is underway and a break through may not be far off. So keep in touch and keep smiling, you can rise above pbc 😃. Best wishes. Diane

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