Forum Replies Created

  • michael-kessler

    Member
    September 26, 2019 at 11:07 am in reply to: Palliative Care and Pulmonary Fibrosis

    Hi:

    I was able to enroll my wife (age 77) with IPF diagnosed 3 1/2 yrs ago, on oxy 24/7 at 8L.

    I had read about it for quite a while and finally decided it was something that would be of great benefit for her.

    I can only say it has been wonderful and so glad she is receiving the added care and attention she needs. They are truly on the ball and practice what thay preach. Our Pulmo also said it is a wonderful program. In fact they have already talked to our Pulm0 and  primary Dr. for some issues they were concerned about.

    There are many providers available and a reco could come from a hospital or Dr. or you can do your own research. You do not need a Dr. referral to enroll.. they will simply come out and do a needs assessment and go from there.

  • michael-kessler

    Member
    August 30, 2019 at 11:29 am in reply to: PFTs and a Reduction in DLCO Number.

    Hi there:

    For what its worth my wife’s DLCO went from 45 down to 15! I nearly panicked when I saw that number but never said anything to my wife as she would have worried herself crazy. That was over a year ago.

    She is is on O2 ,24/7 @6 lpm.

    Her other pft numbers also decreased but not that dramatic.

    I don’t believe there is much that can be done to increase it or the Pulmo Dr. would have discussed it further. I suspect that the body has way to adjust to these types of changes.

    She does go to COE and I do feel she is getting best of care.

    Forgot to mention that she was on OFEV for 6 mo but couldn’t tolerate so was switched to Esbriet a year ago and tolerates it quite well.

    She was diagnosed  in March 2016. She had symptoms for a couple of years before that, but just figured it was the aging process. She is now 77.

    I’m not downplaying the seriousness of DLCO just relating what our personal experience has been.

     

     

     

     

     

  • My wife was started on Ofev 2yrs ago. After 6 mo the side effects (diarrhrea) became intolerable and was taken off for about 4 months then switched to Esbriet a year ago. Has had minimal side effects and tolerates it quite well. She is also has been on Cellcept and a low dose of Prednisone for about 2 yrs and is on 6L O2  24/7.