March 16, 2018 at 3:30 pm my doctor called to advise me that from the routine lab work indicated I had PBC. He had arranged with a Gastroenterology to perform a liver biopsy (the result stage 2) no explanation, just have a good evening.
Living in the age of computers, I made a cocktail (not knowing it would be my last) I sat down to learn my life was forever changed.Adding PBS to my severe Arthritis is not how I had planned to spend my retirement years.
I found the PBS Foundation and this blog on that first internet search. I have learned valuable information and support. I read the new posts daily. Thanks to everyone for sharing.
Written by
barbararobino303
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Welcome and sorry you have to be here. I also live in Colorado. In Kiowa. It can really blow your mind with a diagnosis like this but on the bright side I have probably had this disease for many years and it hasn't killed me yet. I was diagnosed in May 2017 with stage 3 fibrosis. Most of the time I feel pretty good but I am no spring chicken either having just turned 64 years old and do have more issues than I care to have with arthritis. There are also some PBC facebook pages but honestly, I would stay out of there for a while . Sometimes those people get a little cranky, I think. Also, it could cause you more handwringing than necessary at this time.
Actually, the only pain I have seems to be unrelated to the PBC. I have a large hiatal hernia that needs to be repaired and that can give me some stomach issues. I probably would have never gone to the doctor if it hadn't been for that problem so I guess you could say it was a blessing as I didn't really go to the doctor unless I was sick. Then I have the arthritis in my hips which I could do without. Also, I get a little wave of nausea now and then that seems to go in cycles. It bothers me for a week or so then just stops...the same with tiredness and then I have stretches of time that I feel great and almost convinced I don't have PBC at all. I can't really think of anything else.
I was wondering if you were ever tested for hemochromatosis? I also have a high iron count in my blood.My hepatologist said he doesn't care how much iron is in my blood but how much iron is in my liver. I tested negative for hemochromatosis (not too sure about the spelling) but I am a carrier.
I am praying you can get to the bottom of your troubles. I always am interested in your posts.
Thank you. I'm glad for you. Sounds "doable'😊. Actually, that's what's worrying. The iron in my blood is in normal range. They told me that the high iron is in my liver. Thats why the MRE of my liver was apparently skewed 😣. It worries me. Nausea, small shooting pains in my liver area. Just don't know what it is. I have labs tomorrow and an appt. with my hep Wednesday. Fun week. 🙄
I have been doing exercises daily for my hips and I do think it is helping. What bothers me the most is after I have been sitting for a while and then stand up ...it's really hard to get going again.
No explanation from your GI huh? Well, find a good hepatologist right off. Get on the medication that slows progression down even more than this disease already moves. Join the PBC foundation UK AND the USA Yahoo.Groups. You will meet so many women who of course also have PBC and other AI's too. Give yourself time to get used to this whole thing... but be proactive for sure. You've come to the right place!! Use the search engine on this forum to ask questions you want answers to right away. Or ask any of us..... If we know... we'll share. ❤ Take a deep breath. Its gonna be ok.
I'm Stella, 59, diagnosed October 10th, 2016. Doctor said I've probably had PBC 10 years or more.... We think I'm stage 2 also. But, I'm not for sure. I also have RA. And hey, we're neighbors... I'm in Kansas. 🙋
Welcome! I live in Illinois and am at level 3. Still work full time. I was diagnosed last Christmas. I had no symptoms. I have PBC Overlap Syndrome with Autoimmune Hepatitis. On quite a few meds. I'm turning 60 this December and like you, it isn't the way I saw my retirement years being. However, it just makes me more determined to do what I want to do.
This is my 1st post too. I am 68 and live in Colorado Springs. Diagnosed in 2011. I have found that for me PBC seems to have the greatest impact on my emotional well-being - more so than on my physical well-being. I would love to actually meet another PBCer face-to-face!
My name is Bobbie I live in Denver,I dont drive do to other health problems. However, I would love to meet up with you. My husband is down in the springs every Monday for work. I'm sure we can work something out so we could meet up. Or meet in Castle Rock. My new Hep is off of Lincoln & I25 which feels like I'm going to CO Springs. I feel your pain about the emotional part. I have been bed redin most if this year due to osteoporosis. I feel as I no longer have a life.
I've been seeing a doc at Anschutz transplant center in Aurora, but I don't drive the highway and have to find rides which is sometimes difficult. I also have osteoporosis. I am a non profit professional and am still working - about 60 hours a week! I would love to meet you 😊 . Let's try to get to know one another on line first.
Love that hospital my friend just had his 2nd double lung transplant there. I have Centura for my health insurance, it is not expected there or I would go there. I have heard great things about their liver transplant center. I live downtown the lightrail goes right by my house. I can get there very easily if we dont figure out another meeting place. You are a busy lady. You can message me & we can start there.
Hi Susn, welcome! I live the other side of the pond, but it feels like we're all one family here. You'll always get a friendly message back if you want to talk.
Welcome! What part of CO are you in? I was DX in Jan this year. I don't have a lot of knowledge about PBC. I'm hanging in there learning from all these lovely ladies. My brain fog is so bad I do not retain any thing!!
Sometimes when we want to react, wait. It is important to practice the spiritual art of waiting because so much more is revealed in time and this leads to positive spiritual transformation. Look back over your life and remember times when you reacted and later, realize that waiting would have been better for you and everyone else. By taking time for ourselves and other so that we may be shown what to do next. The process of not reacting is a spiritual practice that develops your awareness. It makes you more conscious and open to listen to the voice of divine wisdom causing you to see things from a broader perspective. When you are more conscious your character starts to change. A conscious person is more compassionate. Happiness is not possible without self-discipline . Every situation in this life is a platform where you get to experience the quality of your consciousness. For us to operate from a place of pure consciousness , We have to be completely free of all negative conditionings, all complexes, all unhealthy likes and dislikes and prejudices so that we may have absolute neutrality. All situations we are faced with happen in order to provide us with opportunities for growth and learning. They prepare us for things that may happen in the future to ourselves or others. In the present moment these things cannot so clearly be seen. By not reacting we allow ourself to enter more into a neutral space of our own divinity, then it becomes clear, in time, why things unfolded the way they did. We must keep in mind that the Creator always reveal his vastness and infinite wisdom to mortal minds over time. The same way you must always look at the action of a true Spiritual Master over time.
“You can do a hundred things right, but it only take one thoughtless, reactive action to destroy it all”
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