Forum Replies Created

  • john-kane

    Member
    October 11, 2022 at 6:03 pm in reply to: Wristband Pulse Oximeter

    I just started looking into wrist worn sensor watches. Whiting s is the only one that says they are FDA approved for the SP02 sensor they use.

    More research to be done.

  • john-kane

    Member
    October 11, 2022 at 5:59 pm in reply to: Vaccinated PF people and COVID 19

    I have had IPF for about 3 1/2 years and take Ofev for it. My wife and I have had the two Covid shots and one booster, last year.

    Three months ago we both tested positive for Covid. We both had fatigue(on top of what I already have). My wife had heavy congestion and I had heavy GI issues. Don’t know why we were different but at least I did not get the congestion. These lasted for about two weeks, I lost 7 pounds, not the diet plan I would recommend though. Our MD had us take Paxlovid which greatly helped. I don’t know how it would have gone if we had not had the Covid inoculations.

     

     

     

  • john-kane

    Member
    October 11, 2022 at 5:44 pm in reply to: travel while on ofev

    It took me about a year to minimize the Ofev side effects. What helped me the most was giving up coffee. It seems that the acid, not the caffeine, was the major culprit.
    Diet wise, tart or sour tastes, not spicy, would bother me. Dairy does not bother me at all.

    Took a while to figure all this out but we traveled when we could.

     

  • john-kane

    Member
    July 21, 2022 at 2:34 pm in reply to: Is ipf genetic?

    My mother died of IPF at age 72.  Was diagnosed 3 years ago and am now 72.  Am the oldest of 4 children, and the only one left. One of them died of IPF.

  • john-kane

    Member
    May 3, 2022 at 2:17 pm in reply to: Telling your family

    I was diagnosed in May of 2019. My wife was with me for the post testing discussion with the Pulmonologist. We agreed that it would be best to tell both of our adult kids right away. Very glad that I did and have updated them after each testing testing since then. At this point our friends and relatives also know, the support has been unbelievable.

  • john-kane

    Member
    February 10, 2022 at 2:34 pm in reply to: Household Chores & IPF!

    Buy the best A/C filter you can find and change it once a month.

  • john-kane

    Member
    January 11, 2022 at 3:13 pm in reply to: Ofev UK

    Teri, is your paleontologist looking for Jurassic or Mezazoic requirements?

  • john-kane

    Member
    October 29, 2021 at 8:35 am in reply to: Post-nasal Drip: Another Ailment to Deal With

    Two years ago, when we were trying to figure out what Washington with me, I took myself to an Allergist. All the testing came out negative but she prescribed Azelastine for my sinus/ runny nose issue. This works very well for me, better than the Flonase I was using. IMHO anyway…

  • john-kane

    Member
    October 5, 2021 at 4:22 pm in reply to: What’s Worked for me with OFEV

    Joy, I have been on Ofev for just about two years now. I always eat before I take the pill, oatmeal with nuts and fruit or toast and eggs in the morning. I find that overall the oatmeal works best. For the evening pill I make a peanut butter sandwich or Greek yogurt and nuts and fruit. I take my pills at 9am and 9 pm ish. A lot of the GI issues stopped when I stopped coffee. Hope this helps.

  • john-kane

    Member
    September 28, 2021 at 8:41 pm in reply to: abdominal cramps with Ofev

    Have been on Ofev for two years 150 mg x 2. Y gastric issues were very strong and constant until I stopped drinking coffee…Now I would say that they have been reduced by half, as far as cramps go. The diarrhea continues, but not as bad as before. I believe that the acidity of the coffee added to my side effects.

  • john-kane

    Member
    July 28, 2020 at 10:48 pm in reply to: Breathing Issues and Started OFEV This Week

    Hi Cheryl, I have been on 150 mg Ofev tablets since Nov 2019. My main side effect is GI and this varies by what I eat with the medicine. A salad doesn’t cut it, but protein in any form seems to minimize the distress. I also note some fatigue, although this seems to be minor yet consistent. Hope this helps.

  • john-kane

    Member
    June 23, 2020 at 5:10 pm in reply to: Just got approved for Ofev

    I have been taking Ofev, 150 mg pills twice a day, for 9 months. I take my morning pills at 9 with breakfast. We eat dinner at normal times, around 6 ish and I take my second pill at 9pm with a moderate snack. Usually yogurt or a peanut butter sandwich does the trick. Snacking too light tends to aggravate the stomach. Hope this helps.

  • john-kane

    Member
    April 28, 2020 at 9:38 am in reply to: OFEV and milk

    I have been on Ofev for 6 months, 150 mg twice a day. Five days a week I have oatmeal made with milk and have not had any issues. The other days I have an omelette, or some eggs.

    I haven’t noticed any taste changes, or loss of appetite.

    Yogurt was ok but left me feeling hungry, even with fruit.

  • john-kane

    Member
    March 26, 2020 at 10:38 am in reply to: Nintedanib… Dosage

    Call the manufacturer and ask about an Assistance Fund.

  • john-kane

    Member
    February 14, 2020 at 5:25 pm in reply to: I Did Everything Right, So Why Did I End Up With Pulmonary Fibrosis?

    I was diagnosed with IPF last June. My father died of COPD/ emphysema and my mother did also, I was told. Both were heavy smokers. Last week, I found my mother’s death certificate which I had never seen before. IPF was listed as her cause of death.
    Knowing what I know now about this disease, I am amazed that she had it. Never saw her near any oxygen except on her death bed. So, now I know where this came from…

  • john-kane

    Member
    November 28, 2019 at 10:09 am in reply to: Am I Too Old for A Lung Transplant?

    The Mayo Clinic told me that 70 is their usual cut off age, but, since there is nothing else wrong with me (yet), they can consider an exception…I had a great visit there.

  • john-kane

    Member
    October 8, 2019 at 8:32 am in reply to: Do You Identify With Being ‘Disabled’?

    I also do not consider myself disabled, but I believe that I am early on in this disease. I did get a handicap tag but only use it if I have to walk a longer distance. I passed up a handicapped spot at the grocery store the other day. The gentleman who did take the spot was in far more need than me.

  • john-kane

    Member
    September 26, 2019 at 9:14 am in reply to: What you need to know about Ofev

    Charlene, I am about to start Ofev. Where can I find actual studies/stats on the success for this drug. I watched the manufacturers video, but that is their spin. Thanks, John

  • john-kane

    Member
    August 16, 2019 at 12:09 pm in reply to: Harmonica Class / Pulmonary Rehab

    I already have a good harmonica but the pulmonica looks interesting. I wonder if this is prescribed as therapy whether Medicare would pick up some of the cost….

  • john-kane

    Member
    August 16, 2019 at 9:40 am in reply to: The Frequency of Changing Your Nasal Cannula

    Charlene, I also use the Respironics Simply Go concentrator. It did not come with a backpack, just the shoulder bag. I did find, and buy a back pack for this unit, by Philips, on Amazon. My med supplier needed to order this, but I got it through Prime in 2 days. And less expensively.