Well you could have knocked me down with a feather! Well you can anyway. At specialist the other day and i've been frightened to broach prognosis but have read a lot on ipf uip etc and June 12th is 4th anniversary. She turned to me gave me the stern look and said "what with your stage 3 CKD and UIP we did'nt expect you to get this far!"
What do you say? It shows don't ask questions if your afraid of the answer. Still on reflection I'm quite pleased really, perhaps they've passed me by?
WOW
Hello joke . I think that was rather a strange thing for a doctor to say. It would have been nice to have congratulations instead that you are doing so splendidly. So I will say congratulations and well done!! You're doing great. 👑🎉🎊🎆🎈🎶
Maybe your doctor could have worded it more gently but congratulations!!
Well done!
Well done you. Long may you continue to prove them wrong.
Thanks
Oh there you go..another person who's proven their Consultants to be wrong. Totally Well Done ! ! !
Thanks
I guess that was a back handed compliment from your doctor if ever I've heard one! Good for you!
From the hip kinda gal she is
Know the feeling after 5yeare ago being told i had ipf then i didn't 3 years of ct scans and no treatment then discharged. My breathing deterioatd and last yeat was referred back had lung function tests etc and told almost sure it is ipf still no treatment. Saw my own doctor who put me on antibiotics and steroids (which kept me wide awake day and night). Went back for another lung function test and appointment and told my breathing has improved 10% so now i do not have ipf. VEry confusing. Now told it cold be old scarring which, after all scans etc., and 5 years doesn't give me much faith in what i am told or diagnosed with.
Oh dear! What a mess. I do hope you get some support, but don't wait start lung exercises as soon as possible.
Hi joke That reminds me of a stomach specialist I saw a few years ago. I`ve had COPD since 2002 and at the time of this appointment I was in the throes of a polymyalgia flare up. He was pleasant enough but seemed more interested in asking for any gossip on my female GP. However, as I was leaving he said "Well you do have a few problems, I`ll see you in six months if you`re still here" Think he left the hospital soon after ! Sheila xx
Gosh that's just like me. I don't have a clue what stage I'm at and no ones ever told me and I don't ask. Because I'm the type of person that if it's not good I would go into a bad depression and probably give up. So I just do what I have to do and concentrate on living my life to the best I can.
When you are having an exacerbation ,do any of you find that your temp is a bit lower?
What record reminds you of your first love/sweetheart?.........................KOTC
After years of being careful... 
End Stage usual interstitial pneumonia (UIP)
What part of your condition do you consider the most disabling?
