Just checking in...: Are you all using the... - PBC Foundation

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Just checking in...

PBCRobert profile image
PBCRobertPartner
12 Replies

Are you all using the app yet?

Still one or two log in issues but we think we are resolving those. A quick chat with us usually sorts that out really quickly.

Are you using it? Liking it?

Next round of improvements about to go live so just wanted to make sure you are aware of the opportunity.

Robert.

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PBCRobert profile image
PBCRobert
Partner
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12 Replies

I'm using it and liking it. My main adverse symptom is fatigue and this can tend to have me forget, or lack motivation to get on my App. I'm working on paring down daily activities to be sure that I have energy for THE ABSOLUTELY NECESSARY and the App is well within this category. As you know, when a lot of change needs to happen, best go slowly and thoroughly! So I haven't got here yet, routine daily use of App. At present, I enjoy reading my positive reflections, especially if I feel a bit blue! Recently, that has been quite often and led me to track symptoms. And that has shown me that a number of levels have climbed from 0 to 5. I notice that this, in turn, is more of a positive realisation than maybe thought. They explain 'the blues' which for me are the scary part of PBC because they can be the place to feel lost. So, yes, I like the PBC F App. It works. I think it works best because you are behind it. You, PBC Foundation, have earned a lot of trust.

Thank you, and I look forward to developments. Can you add a bit that calls out "see to yer App!"?

AdeleMalcolm profile image
AdeleMalcolm

Hi Robert. I still have problems when I try and input my test results. I get an error message and have to close the app. I have an Android phone (Samsung S7). I've tried to uninstall and re-install but not joy. I'll diary to check again in a couple of weeks in case it's been resolved. Thanks in any case.

butterflyEi profile image
butterflyEi

Yes I am using the app but probably not to its fullest extent which is down to my lack of IT skills. A very useful tool thank you

PBCRobert profile image
PBCRobertPartner in reply tobutterflyEi

Keep playing with it. You can’t break it!! 😜

in reply toPBCRobert

that's funny! growing up in the 50's my mum was forever saying "Don't play with that - you'll break it". At last, permission to fiddle around!

Candy12 profile image
Candy12

I recently downloaded it no problem at all, I don’t think it’s something I would use daily to record how I feel but, I love the tracker idea, for test results. Just waiting for some results of recent tests to input, if I can tease them off my doctors that is, they do tend to try to hold onto them tightly.

Last time I asked, I got them eventually, but to a rather curt reply: they’re not much use to you unless you know how to read the relevance between each one. But hay ho I plod on regardless and keep asking.

I like the idea of being able to do the surveys as they become available, all accumaulated information has got to be useful for now and for the future.

I just found my initial fibroscan score. Please could you tell me if Is there's a place to record these? I have looked and not found but that happens to me a lot everywhere. :-)

PBCRobert profile image
PBCRobertPartner in reply to

Yes there is.

Self-management

Trackers

Fibroscan

(Also Fibroscan CAP score too)

Any problems, feel free to message me.

in reply toPBCRobert

under Trackers, I see Symtoms, Tests, Mood, Medicines & Appointments, but that's all, no Fibroscan

PBCRobert profile image
PBCRobertPartner in reply to

Click on tests. Then add other.

Then you can scroll to find fibroscan.

got it, thank you Robert.

Moopie profile image
Moopie

Been playing with the new app, used the positive reflections diary so far. I will continue to play with the other features & look forward to the new features! 😁👍

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