Chuck Pefley

Happy New Year, Charlene!

I had a port-a-cath placed in January 2018 for blood work and chemo treatments. Only local anesthesia was used – not a general. I just had the port removed last month after almost 2 full years of intermittent access. No issues with infection or other nasties. Be sure to ask for lidocaine just prior to each access. Happy…[Read more]

Hi Charlene,

Happy Holidays!!!

I’m very happy you were able to hear (and hopefully, meet) Noah Greenspan and be introduced to his Pulmonary Wellness Foundation dot Org. Noah’s an amazing fount of knowledge, inspiration, and energy … all directed toward us, the pulmonary and/or cardio-pulmonary disease afflicted community!

I can attest…[Read more]

Hi Charlene,
Needing to use supplemental O2 does give me what I consider to be a perk. O2 use automatically qualifies for a disabled parking in the State of Washington. I think the “perk” idea is perhaps a matter of perspective. Preferential seating at the theater is another plus.

But PLEASE, don’t think for a minute that I wouldn’t rather pass…[Read more]

Hi Charlene,

Aside from “normal” male-pattern hair loss I have experienced changes in what’s left of my hair. Thinning as well as a much finer texture. Cause? That’s the big question, isn’t it? Until running across this comment thread I simply assumed my hair changes were the result of the heavy chemo treatments I had last year which did result…[Read more]

Hi Katie ( @katiebagshawe )

Thanks for your info that the Galbraith Cormoran Stryke books have been serialized. I’ll have to see if the series is available online. Loved the books!

Regarding eReaders, my first was the Kindle Fire when it first came on the market several years ago. I shied away from the dedicated eReader in favor of a more…[Read more]

Katie, Charlene, Roger, Jean-Michael,

I love this thread! Thanks for starting it @katiebagshawe,

I’ve always been a rabid reader but since being diagnosed with both IPF and lymphoma I find I’ve become even more voracious. Most of my reading is on my iPad with the Kindle app. A majority of my books come free via…[Read more]

Hi Charlene,

I received my IPF diagnosis July 2016 and then in January 2018 a rare & nasty lymphoma diagnosis. The first 6 months of 2018 were spent in and out of the hospital enduring chemo treatments. Not fun. But, I achieved remission in June 2018 but was cautioned that “remission would likely be counted in months, not years”.

My outlook on…[Read more]

Hi again, Charlene,

I’ve not noticed any odor related to the heating of the plastic tubing.

I should mention as a disclaimer that plastic tubing is going to become stiff when it gets cold. That’s simply the nature of the beast. However, that said, I’ve found that the continuous oxygen flow via my concentrator tends to make the tubing stiffer…[Read more]

Hi Charlene,

Just a cautionary note when warming your cannula hose in the oven … temperature and time in oven are important. Our oven has a “keep warm” setting that is limited to 170ºf . I’ll run it up to that temperature and then simply turn off the oven before placing the hose in the oven. I also put the hose on a cookie sheet before putting…[Read more]

Hi Charlene,

I was diagnosed with IPF in July 2016 and managed pretty well until late August 2018 when I experienced an acute exacerbation due in large part to fires in the Pacific NW. (I live in Seattle, by the way.) In terms of oxygen use in cold weather I have no experience … so far. However, I do have a couple of tips that may be of help to…[Read more]