Tuesday's Tip: Any symptoms or change in how... - PBC Foundation

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Tuesday's Tip

DonnaBoll profile image
DonnaBollAdministrator
5 Replies

Any symptoms or change in how you feel can only be addressed if the clinician asks about them or you bring them up in the conversation. It has been almost 40 years since I was originally diagnosed with PBC. I can count on one hand the times the subject of my itching or the fatigue has been brought up by him.

We have to come to our appointment ready with any questions or concerns we have. Write them down. Take the paper with you. Speak up! if you feel the end of the visit is coming and you haven't been asked about the itch or the fatigue ( and it's a problem for you) start that conversation. If you feel the itch is severe enough have a discussion about possible medication that ARE available.

We are responsible for what can sometimes be part of our many visits with our doctors. Don't be intimidated by them... there was a time that whatever they said was gospel. Now we have to have respectful discussions on subjects we might feel they are not addressing.

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DonnaBoll profile image
DonnaBoll
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5 Replies
DebatDG9 profile image
DebatDG9

Hi Donna

I was brought up to believe that any consultant was God as my father was a GP here in the UK and I still do have a healthy respect for them. However, as PBC is not a common condition and still not understood by many medics I feel very empowered by Prof Jones’s book and intend to use the longer checklist as a basis for my list of items to discuss at annual check.

DonnaBoll profile image
DonnaBollAdministrator in reply toDebatDG9

I couldn't agree more about Dr. Jones' book. It is such a wonderful resource. I think most doctors do need to be respected but there are some in our lives that maybe there were personality clashes with - or even in some cases the doctors just didn't listen. We can respect them and still have a healthy discussion for sure about any of our concerns.

gwillistexas profile image
gwillistexas

I agree. I remember telling my hep that my grandmother believed whatever her dr told her with no questions asked. I’m not that woman. We have to remember , we are not their only patient so sometimes we have to bring them into the moment and place their focus solely on us.

DonnaBoll profile image
DonnaBollAdministrator in reply togwillistexas

Absolutely! When we are in their office, we should be the focus of their attention to any of our concerns. I hope you feel you are when you see the doctor.

gwillistexas profile image
gwillistexas in reply toDonnaBoll

Yes I do. I don’t think I could ask for a more attentive and compassionate dr. I feel blessed.

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