Forum Replies Created

  • Amen , Jillt

  • hello,  my name is pete.i was on ofev for about 9 weeks and finaly gave up .I was definatly in that 66% .i.e. living in the bathroom.ive been told by many that espriet is not much different .what is lacking in all the studies and trials is the out come with the meds.no one seems to be able to put it intp lay mans terms.I.e. if I die in 4 years, how many more month will the medication actually give me .for instance , several members of my family died of cancer .their radiation and or chemo treatmnents only gave them a few mor month and the cap their endured was not worth it for them of the family.I have come to believe that any study done by the makers of ofev  or espriet is biased .at $100000 a year per patient I can certainly understand that .its math and profit.its sad that so many people are giving false hopes with all the possible meds and remedies.you guys have been unable to make a cure or give us a product that doesn’t make you feel like crap while taking it.yes there are exeptions but most of us need meds to counter the effects of the drug itself.i think that quality of life is more important then quantity.the regular effects of I p f are bad enough with out more problems from the meds you give us.boehringer Ingelheim is making a mint…..

    pete  [email protected]

  • army-pete

    Member
    October 3, 2019 at 8:33 am in reply to: Aloha from Hawaii

    hey charlene

    I am so happy for you. you go girl. now stay of the computer and have fun .lol.

    “see you” when you get back.

    army pete

  • army-pete

    Member
    September 4, 2019 at 9:23 am in reply to: How do you feel?

    darn it ,cant see what I am typing

    nagging

  • army-pete

    Member
    September 4, 2019 at 9:22 am in reply to: How do you feel?

    hey Charlene,

    you are never nqagging.lol

    peter

  • army-pete

    Member
    September 3, 2019 at 2:13 pm in reply to: How do you feel?

    thank you for caring.

    the air in the house is ok as far as i knowissues with coughing .we keep the ac on.showering causes even with the exaust fan on.were in fla.air is probebly better the in a big city.for what its worth, i just went outside to unplug my charger and put it into my shed.my oxy.went to 76.my wife is giving me hell for not taking the small tank with me.i’m sure she is right.lol  i sent a message to cinthia but i maybe i messed it up.wanted to cheer her up…..anyway,

    take care

    pete

  • army-pete

    Member
    September 3, 2019 at 10:05 am in reply to: How do you feel?

    hi to every one

    I have not been on for a while .I can attest to the unfortunate fact that I have the same experience.what concerns me is the speed of the symptoms progression.my next appt.is in October.it almost feels like a waste of time to go only to hear what I already know.with in the last 3 month or so I have been on oxygen , for exertion .seems everything exhausts me.taking a shower ,(brushing my teeth bring coughing spells)making the bed or helping to empty the dishwasher……..I find my self using oxy.more often.i am around 90 to 93, sitting down.any of the afore mentioned activities drops me to the high 70 s or low 80s.resting without oxy. brings me back to “normal”in about 10 minutes.with oxy.i recover in 5 min.or less.i am fatigued most of the time , have muscle aches ,some depression.my wife says a lot of being down.i am on Prozac and trazidone so  its hard to tell how depressed I realy am.lol.i was diagnosed ,I think around 2016 to 2017.(had o lot of dr. appointments .and I get confused .) any way I’d say 2 years.the good news is that I seem to be “ok” with the illness.i  cant stop it anyway.oh,I was on ofeve for about 12 weeks .too many problems with no promise of it working …..wow , isure wrote a lot .LOL

    peter

  • army-pete

    Member
    May 12, 2019 at 10:27 am in reply to: A condition with no clear diagnostic criteria – Idiopathic

    hi charlene , we “spoke before”so far my diagnosis is ipf.honey coam slowly progressing.ofev made me sick after 7 weeks i quit it.scared to try the other drug.dont want to go through living in bathroom again.as of late , i am out of breath  making the bed or taking out the garbage ,even showering is difficult.i have ptsd .i am a vietnam vet and agent orange  may have been part of it.the va however does not recognise ipf .so the say its likley from smoking etc etc .thanks to trasedone i sleep sometimes 10 hours .but i am still exauste  ans nap during the day.my vietnam friend envy me for getting so much sleep…..i would rather sleep less and have more energy.next appt.at the va pulmenary dr is in oct for another cat scan and the horrible breathing test.i dont know why i shared this ,guess i just wanted to reply tp some of the comments.i struggle withat darn cimbia cort it makes me cough so hard that tears come out and my hard goes nuts.i just got a concentrator but have not used it yet.oximeter is around 94 when i sit,86 or so when exhausted.crap i hate this .allways been healthy .finaly retired and now this.any way , happy mothers day to all the ladies

    armypete

  • army-pete

    Member
    April 2, 2019 at 12:20 pm in reply to: Taking ofev a year!

    You are very kind.thank you.I am on prozac , trazedone and blood pressure drugs and a few more for what ailes me .The ofev just buriied me .lol

  • army-pete

    Member
    April 2, 2019 at 12:16 pm in reply to: What You Enjoy…

    WE ARE IN FLORIDA . MINUTES FROM THE BAY AND A FEW LONGER MINUTES TO THE GULF.DONT WORRY .WHEN YOU GO TO HAWAII YOU SEE WHAT I MEAN .LOL

  • army-pete

    Member
    April 2, 2019 at 11:59 am in reply to: Taking ofev a year!

    Being somewhat of a cynic,I see that the good germans ,and I am one , raked in over 20 billion dolars sinse 2017.Much of there studys are trials and the results are measured by the amounts of air you can exhale /inhale.I do that test every few month.It  does not show ay “real life” qualiy of life changes .At least in my case , living with ofev is worth then living with out it.For now I take my chances.Of course I might change my mind as the desease progresses,but I doubt it.I had fiends and family die of cancers some went for the treatments ,some did not .They all left us within a few month of one another …. Maybe I am the devils advocate.Sorry

  • army-pete

    Member
    April 2, 2019 at 11:59 am in reply to: What You Enjoy…

    I enjoy eating out at a waterfront restaurant with my wife.

    Having coffee or wine on the patio

    Watching movies on Netflix , amazon , hulu etc.alone.She does not like tv.

    Driving our Cadillac

    Going to my weekly Ptsd group

    Do I dare say , being intimate with my wife?