Forum Replies Created

  • hans-m-fink

    Member
    March 9, 2023 at 6:32 pm in reply to: Starting Ofev

    • How long after your diagnosis of PF/IPF did you start taking Ofev?
    Immdiatly. Actually my Respirologist left the choice to me & I chose OFEV.

    • When you started Ofev, had your Doctor shared with you whether your PF/IPF was mild, moderate or severe?
    My IPF was moderate.

    • When being prescribed Ofev did you ask or did your Doctor offer to explain why they chose this drug over Esbriet?
    Esbriet users must be careful being in the sun & I like being in the sun.

    • How long have you been on Ofev?
    Started in 2017 after my diagnosis.

    • Can you outline some side effects you have experience as a result of being on Ofev?
    Had all the stated side-effects you can have including losing 50lbs weight. The worst is continuously upset stomach.

    • Do you have PF (with a known/suspected reason for the disease development) or IPF?
    I have IPF.

    NOTE: Stopped OFEV October/2022 thru the end of the year. Immediately felt better (except for breathing issues).
    Tried it again beginning January for 2 weeks. Side-effects returned. Now I chose quality of life over Quantity.

  • hans-m-fink

    Member
    February 16, 2023 at 4:39 pm in reply to: Oxygen Delivery System when needs go up

    Hello Robert,
    I change the Oxygen flow rates “Before” getting up for bathroom visit. Then lower it when back at sitting rest.
    Before doing any kind of movement or exertion, I always check the Oxygen saturation before actually proceeding. This all takes time but find that it has to be done to be safe.
    Resting, my settings are usually 6-8 liters but wont hesitative to go as high as 10 if necessary.

  • hans-m-fink

    Member
    September 16, 2021 at 10:34 am in reply to: Ofev UK

    Hi Marilyn Cellucci,
    I have the same weight loss issue as you. Also, I would not accept the view of your Pulmonologist but am convinced that the weight loss is directly related to the OFEV medications. Have not yet asked a nutritionist for advice but will soon.
    Sincerely
    Hans Fink (in Canada)

  • hans-m-fink

    Member
    August 28, 2021 at 1:33 pm in reply to: Stem Cell Procedure for IPF

    Hello Charlene & Rune,
    I am also seriously considering having stem cell treatment done for myself. Unfortunately clinics in Canada have so far resisted in offering it to us IPF patients.
    I checked with a clinic in Michigan, USA & they would do it.
    But since the pandemic struck us, the borders were closed. Now that I could travel to the USA, I am still hesitant because of the risk of Covid-19 infection.
    So I’ll wait a little longer.
    take care everyone,
    Hans

  • hans-m-fink

    Member
    August 24, 2021 at 10:58 am in reply to: Systemic Enzymes, with or without prescription anti-fibrotics

    Hello Rebecca,
    Thank you for the information on Systemic Enzymes.
    I have not tried it yet but am very interested I getting all the ingredients.
    Because I am currently on Ofev whose side-effects caused a lot of weight loss, decided to stop ECGC.
    Where would one usually find all the items you describe?

    Sincerely,
    Hans Fink (Windsor, Canada)

  • hans-m-fink

    Member
    September 3, 2021 at 3:26 pm in reply to: Stem Cell Procedure for IPF

    Hello Charlene,
    I appreciate your comments very much.
    I think that a decision to have procedures done such as stem cell therapy, which are still largely unproven may have something to do with age & attitude of an individual IPF patient.
    When you are younger, such as yourself it is different. As for me, I’m 86 years old & figure “what do I have to Lose”. If I can add a few more years that may be relative pain-free, then why not.
    For the younger generation, I sincerely hope that effective cures will soon be discovered & applied.
    Many good wishes to you & the great work you do on this forum.
    Sincerely,
    Hans

  • hans-m-fink

    Member
    August 31, 2021 at 5:13 pm in reply to: Stem Cell Procedure for IPF

    Hello Allen,
    I am curious how the stem Cell therapy procedure for the lungs was performed?
    Can you provide a brief description?
    Thanks,
    Hans