My question this Thursday was " what are your biggest fears having PBC?"
The responses from this were, I'm sure, some things many of us had crossed our minds or do more than that - fears that are almost constant for us. I'm hoping more of you will share some of your fears with us. I know this is a topic often hard to talk about or you might feel it's 'silly'. Believe me, no fear is silly. What you post may be exactly what someone else is fearing as well. You may be their voice right now.
will I need a transplant - afraid my disease will suddenly progress -- afraid I'll die -- I have small children to raise -- afraid I'll start itching ----- afraid my numbers will be worse next time ----
If something is making you fearful, then it's important to talk about.
I hope we can share more about this important topic.
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DonnaBoll
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I do know you are not alone with your anxiety over lab results. All the 'what if' come flooding in when we are waiting for results. Just remember those numbers normally fluctuate for everyone of us. That's why it's important to always look at the overall trend of the results. Telling yourself that worrying won't change the results is one thing -- believing it can be another. Sounds like you have been a responder to Urso. That's great! Let us know when you get the results.
i think it is that the disease (s) will progress and hinder my quality of life with my family and friends. I have 9 grandchildren whom I love to do things for….
I know for a fact you are not alone in having this fear. But..... we have to try to stop thinking about the 'what ifs' and focus on what is going on and what we can do right now. We don't want to miss what's right in front of us thinking about the future. I know, from several self care workshops I've attended that have been presented by Robert, that we all have to decide what we can and cannot control. It can make such a difference putting all of our efforts into 'control' list.
None of us want to be sick in any way --- right now I'm fighting a strained back and I feel it is consuming me these last few days. I'm sure you do want some reassurance that you will continue to be able to enjoy your family. Thanks for your response.
My fear is that I seem to have one of the rarer types of PBC with the dreaded ANA gp210 positive but AMA negative! There doesn't seem to be much info on my this type and everything I have read so far worries me as it states "more aggressive and likely to progress faster"! 😟 Am I alone with this condition? I would like to hear from someone else in this group with a similar diagnosis. I was diagnosed over three years ago and am trying to be positive since my LFT's have come down now being on second line therapy with Ocaliva after not completely responding to Urso. Hopefully there are others out there who can share my concerns.
First of all, it sounds like your medication is keeping your numbers under control. This should be a big relief to you. I would suggest you submit your question to the Thursday's Q&A from The PBC Foundation. This is weekly with a PBC expert. Do you have Dr. Jones' book? I will try to see if I can find anything in my copy about this.
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Brain Fog/Ammonia on the Brain
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