Forum Replies Created

  • Tim Costar

    Member
    November 2, 2023 at 10:40 am in reply to: Winter walks in the cold

    I have similar concerns here in Ontario. It would probably be a good idea to contact your Oxygen supplier for guidance. My worry is not just the cannula but the POC itself. If you wrap it so that freezing air won’t get to it you also won’t be getting any air from which to extract and concentrate the O2. I vaguely remember seeing something in the original documentation saying that it shouldn’t be used in extreme cold.

    Anyone else have experience on this topic?

  • Tim Costar

    Member
    October 27, 2022 at 2:52 pm in reply to: REMAP-ILD

    Just a heads up…..Nov 1, UK will be on Standard time. North America doesn’t ‘fall back’ until the following weekend.

  • Tim Costar

    Member
    July 26, 2022 at 4:16 pm in reply to: Relative LPM on pulse oxygen concentrators

    My provider was completely ‘up front’ with me on the difference between my poc and the continuous flow I have (but don’t really need) for at home use. I was prescribed 2 lpm for exertion but he set the poc at 3. Rationale was that most of the O2delivery on continuous flow is wasted, you only need what 2lpm delivers in each minute for the period you are breathing in. So far it has been doing the job for me. With the poc set to 3, I’m maintaining sat at over 95 while walking compared to low80’s without supplementary o2.

  • Tim Costar

    Member
    June 30, 2022 at 5:37 pm in reply to: Zinc in the Role of Lung Fibrosis

    Did she say why?

  • Tim Costar

    Member
    June 21, 2022 at 1:03 pm in reply to: Zinc in the Role of Lung Fibrosis

    Given the reputation of Cedars Sinai, authors of the report, I started taking zinc the moment I read the article a couple of weeks ago. My thinking was, it couldn’t do any harm so why not!

  • Tim Costar

    Member
    March 17, 2022 at 11:25 am in reply to: How are long-term (4+ years) OFEV users doing?

    I was 4 years in January. Started originally on 150 but after 9 months of uncontrollable diarrhea was scaled back to 100. Everything was stable until my last PFT/6MNTW last November when my stats fell off significantly. This resulted from a fall in August where I fractured 5ribs so the hope was things would be back to normal after a few months. I’m due to have next follow up along with CT scan in May. I’m not confident my stats will be that much better and concerned that the fall resulted in an exacerbation that has taken me to a lower plateau in the disease progression. I’m also concerned that this may result in withdrawal of funding for my Ofev.

  • Tim Costar

    Member
    March 8, 2022 at 10:43 am in reply to: Deep-breathing exercises

    Which exercises are you doing. I’m doing a couple that require machines e.g. holding a plastic ball in a clear plastic cylinder for as long as you can. Also do chest stretching exercises but interested in as many options as I can find.

  • Tim Costar

    Member
    January 18, 2022 at 12:25 pm in reply to: Spotlight on the Immunosuppressed.. Finally.

    I am 5years since original IPF diagnosis and over4 years on Ofev. No one has ever implied that I am immuno suppressed but I guess that is lack of communication. Fortunately, at 80 years of age, I have been high in the pecking order for each round of vaccines and now completed to third dose. Supposedly 4th shot is coming soon (in Canada) and specifically for immuno suppressed at first, so I’ll put my name in the hat and hope they don’t tell me to come back later. I had an antigen test about a month following my second shot. Test found no evidence of antibodies but there was a disclaimer saying the test was showing a lot of false negatives!! I guess I just have to hang in there.