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  • mike fryman

    Member
    August 10, 2022 at 2:26 am in reply to: When You Don’t Want to Talk About PF Appointments

    I find my self thinking of things after my appts, i have a tendency of making everything better than it really is.  I have been dx and on O2 3 years, it gets hard as i really don’t know how i am doing.  I know my strength is slowly decreasing but i can ride my recumbent bike, move half the yard(not big) slowly, weed wack.  It sounds like i am doing good but there are times that i have to sit down and get  my strength back.  I am 71, was a pretty good athlete so those times when i  can’t find something to do it is hard.  I was also pretty good guitar player but i struggle as i find my self asking why play……..and then i will have a couple of days of playing or working on a new tune.  But my short term memory is bad, thus i don’t remember new songs or even cool licks.  Sounds like i am whining.  It is just hard to have that feeling of being tether to a cannula, can’t hike, run, move around much.  It takes mental strenth.  I force myself away from the TV……can’t wait for John Irvings new book in October….i have been reading a little.  Then ever once in a while i will have a coughing congested episode, may take 1/2 hour to clear.  I guess i got IPF so thank you all for your thoughts and listening to me whine.  I live in colorado so have to be very aware of elevation, but i love it.  You all give me strength so keep sharing.   if anyone else has Irving type recommendations for reading just let me know, love patchett, robins, wolf.  OK time for me to stop.  Hang Tough

     

  • mike fryman

    Member
    January 11, 2022 at 3:57 pm in reply to: High protein vegetarian meals.

    I am unfortunately IPF also, for about 2 years.  I have developed allergy, i guess, but i get very conjested when i eat dairy.  So cheese, butter  and milk products are out.  I do beans, i still eat lean hamberger, though not a great meat eater.  Love nuts, pistachio’s have good protein.  Have tried tofu, but it is all in the preperation and i am not very good.  Lets all hang tough, i am on ofev and doing fair, have lost about 30 pounds but a lot to my decrease in eating.  I do have an occasional beer though i find i can’t enjoy the more stout ones any more and now go pretty light.  I do miss pizza and fried foods but considering the alternatives i am doing well.  Good Luck and health to us all.   Mike

  • mike fryman

    Member
    December 23, 2021 at 4:01 pm in reply to: Being discharged with ipf – is it normal

    Marg is your husband on ofev,  where is Aintree.  It doesn’t seem right that a pt with IPF would not be followed by a pulmonologist throughout their illness.

    I was dx with IPF about 1 1/2 years ago, have been on O2 24/7 since.  I think i am doing OK, you never really know as there is so little for real info out there.

    I presently live at 7500ft altitude and am thinking of moving down to 4500ft,  i love where i live and am not sure but if it would help with my illness i would move.  Has anyone had this issue, or noticed doing much better at lower altitude.

    To return to marg, i see the pulmonary clinic and have blood drawn every 3 months.  Don’t always see the doc, but work out to about every other time.  hope you husband the best….hand tough.    Mike

  • mike fryman

    Member
    December 23, 2021 at 3:14 pm in reply to: Prospective change of meds: OFEV to Perfenidone

    I have been on ofev for about a year and a half and think i am doing OK.  PFT’s seem to remain the same, which is a good thing, as they say the ofev is stopping the progression, at least i hope so.

    I am thinking of selling house 7500ft altitude and moving to 4500ft, has anyone done this.  Is a change in altitude a significan thing for IPF’ers.   I do love where i live.  Collorado springs, high north side.   Mike

  • mike fryman

    Member
    November 2, 2021 at 2:34 pm in reply to: Post-nasal Drip: Another Ailment to Deal With

    I was dx about 1 1/2 yr ago  on O2 24/7 and take ofev and cellcept.  Claritan does help but i still have runny nose at times.  I do use Ayr ointment in nostrils at night which i think helps me get some sleep.  And my lord sleeping is an issue.  I have IPF i guess sound sleep is one of the losses.  Does any one who is on my meds think they have a psychic effect, i know i have increased short term memory, i am 70 but i also think they have a significant mental effect.  Just wondering.  This is my first post, feels good.  I am trying to get the VA to service connect my IPF from my middle east military time.  Does anyone have any experience with that.  Not sure how that will go but fill free to give me some feedback.  DAV rep stated that i smoked for about 9 years as teenager and before being drafted and that may exclude me.  Anyway i hope not.  Havn’t smoked in almost 50 years.  Thanks for reading,     Mike

  • mike fryman

    Member
    January 11, 2022 at 4:03 pm in reply to: Taking Cellcept (mycophenolate) PLUS Ofev

    Ter ann, i also lost ability to eat dairy, so no cheese, butter, breaded stuff.  It is hard, at times some thing maybe prepared with butter but i know pretty quick, as i start coughing.  Am on meds and O2 for last 2 years.  Hang in there .  Mike

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