Tuesday's Tip

[DonnaBoll]

I know we have touched on this subject before ( I think) but it is so important to repeat.

Although it is part of the guidelines regarding diagnosis and treatment of PBC, it is thought about only 50% of doctors (in the UK anyway) ask about symptoms of itching and fatigue. They may ask if you ARE itching or fatigued - but do they really ask you how the itching/fatigue is impacting your daily life? Most of us can answer 'no' to that. I can remember being asked how the itching was on a scale of 1-10. That was all - end of discussion on that subject.

Personally, I have rarely in the 40 years I have been pre and post transplant been asked how the itching may be impacting my daily life.

We have to be proactive about really talking with the doctor about how the itching is affecting our quality of life. There are medications out there that may help. If the doc doesn't really think that the itch does affect quality of life, he may not even think about a discussion of what could help.

PLEASE start these chats if the itch and/or the fatigue are impacting your lives. We have to make the physician aware that we are people who lives are changed by this disease. We are not just another patient on the their list for the day.

How many can relate to this? Doctors have to be aware that we are individuals whose lives are different now. The itch and fatigue can be overwhelming for some of us... I can only hope that someday soon doctors realize this.

I'm reading this and thinking it really should be "Thursday's Thought'" but I feel it's so important for us to start these conversations. Don't wait for them to.....

[Turquoise2075]

Hi Donna, Thank you for posting this. My liver specialist is polite but entirely focussed on my blood test results and does not really focus on the actual symptoms I'm living with. He did finally listen regarding fatigue about a year and a half ago when I really emphasised how bad it was and did a medication change that helped at the time. But generally he doesn't ask about things and the appointments are over in under 10 minutes. As I only see him once every 6 months it can feel like I'm very much on my own. So I agree, we have to be proactive, otherwise they don't really know what we're dealing with.

[DonnaBoll Administrator in reply to Turquoise2075]

I, too, see my hep doc every 6 months. He focuses on the lab work first and foremost too. He has never once asked about if I itch or about the fatigue. Good thing we all can help each other with these!!!

[Turquoise2075 in reply to DonnaBoll]

I’ve just contacted my liver specialist about concerns I have about Ocaliva and he says there are no concerns and I only need monitoring every 6 months still. It’s because my lab work is pretty good apart from GGT being a little high on the last test. But I’m feeling a bit vulnerable given the recent FDA statement on Ocaliva and was hoping to maybe go back on Urso instead. I’m in Australia and you’ve given me the email of Sally from the Liver Foundation here before so I might see if she knows of any advice coming through here yet about Ocaliva. I just mention this here because I feel it relates to communication issues with specialists. I find it so hard to be heard at times. I didn’t get to speak to him directly, only via another staff member, and my next appointment is in June. I felt kind of shutdown with my concerns by the staff member I spoke to on the phone. We really have to do so much to advocate for ourselves sometimes! I know my specialist really doesn’t understand the fatigue I experience either. It’s deeply physiological but it’s like he thinks it’s psychological.

[Candy12]

My doctors never asks about symptoms, when I spoke up about fatigue she just asked if I had support networks to help me work around it, even denied for a long time that the fatigue had/has anything to do with my PBC.

But I trust her with my life and wouldn’t want to change her, I know if anything however small were to change , shes on it , so I’am ’ happy to manage my fatigue while she manages my disease. 😊

[DonnaBoll Administrator in reply to Candy12]

I'm glad you feel you can trust her so much. With PBC, we are in the the long term relationship with our doctors. How do you manage your fatigue? I know some doctors really don't even acknowledge that fatigue can be so debilitating at times.

[Candy12 in reply to DonnaBoll]

I think the best way to describe how I manage my fatigue is getting to know yourself, planning and be willing to adapt. I must say though it’s easier since I’ve retired.

I know my best time of day is the mornings, so I get anything I need todo or want todo done in the mornings even telephone calls,. If I have a busy few days I know I’am going to falter at some point, so I book myself the day off when I’am planning on what I’am going to do, obviously I can have a down day, it might be a couple of hours if your working but taking that time without guilt is what’s important.

[DonnaBoll Administrator in reply to Candy12]

Thanks for sharing how you manage the fatigue. You are so right about knowing how your fatigue affects you and being realistic about planning. Not feeling guilty about that 'down time' is crucial to our self care.

[Turquoise2075 in reply to Candy12]

I have found the same thing Candy12. My specialist doesn’t seem to understand how debilitating the fatigue is either even when I tried to explain.

[DonnaBoll Administrator in reply to Turquoise2075]

When we are just sitting there 'looking good' it is almost impossible for anyone to really understand how that fatigue feels. Wish there was a better word for it.. 'fatigue' seems just so ordinary that everyone experiences.