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  • I was diagnosed with IPF in July 2015. Now going on five years. I have a great pulmonologist and excellent O2 equipment. The first symptoms I experienced 12 months before diagnosis was fatigue and shortness of breath playing golf, two weeks of a dry cough, and shortness of breath on a flight. I thought it might be allergies so I went to urgent…[Read more]

  • I checked with my pulmonologist about the level of O2 I should maintain. She said >89 is satisfactory. I’ve been trying to stay at at least 90 since I was diagnosed in July 2015. As the disease has progressed I’ve moved from a concentrator to liquid oxygen. I had tanks for a few months, but I found them to be labor intensive and noisy to fill.…[Read more]

    • Hello Roger, thanks for the info on the liquid o2. Also, I think you will feel better and have a little more pop in your step if you kept your oxygen stand over 94. You won’t be as tired and have more energy. Keep us up to date, mark.

    • Thanks so much for writing to us regarding this @roger-wenschlag – I know liquid oxygen is a “hot” topic among many patients living with IPF, particularly the struggle in getting this. I’m glad you have it and are finding it effective! Tanks and concentrators are cumbersome, I agree. Sounds like your physician and supplier are great, which is nice…[Read more]

  • When I first started Esbriet I experienced some stomach issues when taking the drug.  It felt like I was swallowing battery acid.  Eating solid food and/or taking Tums eliminated the problems.  I called the lab who makes it and they said taking Tums will not affect the drug’s efficacy.

  • Responses to Esbriet questions:

    — Prescribed seven months after diagnosis
    — IPF condition was mild at the time
    — Doctor didn’t say anything about Ofev, only that Esbriet may extend my life. I believe it has.
    — Been on Esbriet for 3 1/2 years
    — Side Effects: Upset stomach if I don’t eat food with dosage, occasional loose stools, occasional…[Read more]

  • In reading Elanor’s comments about telling others about the disease I thought about my own experience. I tend to be direct and open with my feelings, so here’s what I’ve done:
    — In my first visit with the pulmonary rehab therapist I was given a one-page sheet listing about twelve basic facts about IPF. For example, one of them said, “I may look…[Read more]

  • I’ve played golf using three different forms of supplemental oxygen.
    — The first was with a Respironics Simply Go Mini. I bought a backpack made for it and got along quite well for 12-13 hole, then got tired.
    — The second form was the Sequel Eclipse concentrator that puts out 3 liters of continuous flow. It was a bit of a hassle dragging…[Read more]

  • I too read Megan’s thoughtful comments about her dad’s last days. My wife Megan’s comments too. I was diagnosed with IPF in July, 2015. Thankfully, I’ve got a wonderful pulmonologist who’s on top of everything — pulmonary rehab, Pirfenidone early in my disease, and oxygen. Plus, she won’t let me “get down” on myself which is my tendency in…[Read more]

    • Hi Roger,

      Nice to hear from you, thanks for writing! I hope you’ve been doing well and getting out to play lots of golf 🙂

      It sounds like your Pulmonologist is great, this is so important in the process of our disease isn’t it? Glad she is on top of everything and encourages you each day with your disease. It is easy to get down on ourselves, I…[Read more]

  • I was prescribed Esbriet 8 months after my IPF diagnosis. My pulmonologist said, “We don’t know if it extends life or not, but why not do all we can.” I take three caps three times a day with meals. Only consistent side effects are occasional upset stomach (when I eat scant food), occasional GI distress (loose stools). Luckily, I’m retired…[Read more]

    • Love your insights into living with PF, and in anticipation of using oxygen Roger! Thank you so much for sharing your experiences with us. I do hope that it is partially because of Esbriet that your FVC scores have been declining only slowly… here’s hoping this is a drug that truly does extend our lives. I agree with the doc, let’s do all we…[Read more]

  • Charlene — You come across as a generous, giving person. Perhaps instead of expecting reciprocity for when you knock yourself out for others you should just back off those situations where you are experience a deficit balance (ala Covey). Focus instead on the things that bring you joy, and where you know people appreciate your efforts and…[Read more]

    • Hi @roger-wenschlag,

      Thank you so much for your kind words and for posting this update following my column about reciprocation in friendships. I’ve been giving this a lot of thought, and it has been consuming my mind over the past few days as I continue to be frustrated/struggle with others who seem to be ‘taking’ of my time and not returning…[Read more]

  • Since my IPF diagnosis three years ago I’ve had my ups and downs, but lately have tended to focus on a limited future, e.g. “Why buy a new car, I won’t be here long enough to enjoy it.”  I saw my pulmonogist a week ago, and she suggested I try to quit that kind of thinking, and instead live for each day, and try to be happier.  So, that’s been m…[Read more]

  • The oxygen tests are critical for you and your doctor to understand how well your lungs are functioning.  Two critical measures are forced volume control (FVC), and diffusion (DIFF).  FVC measures how big your lungs are and how fast the air comes out when you exhale.  DIFF measures how much oxygen you take out of the air you breath.

    The tests ar…[Read more]

  • Roger Wenschlag posted a new activity comment 2 years, 11 months ago

    All is well now, but it’s obvious that the whole business of oxygen use and availability is fertile ground for improved education. Maybe there is a YouTube video on this(?).

    • I am glad that everything seems settled with your supplemental oxygen now @roger-wenschlag. I do agree that oxygen services, providers and how to obtain this, especially for new patients, is important to have ongoing training and improved education. 🙂

  • I wish I had known the parameters and requirements for supplemental oxygen and how to arrange for it. My internist was clueless. It took me two months of fits and starts trying to figure this out.

    • Hi @roger-wenschlag,

      I am so sorry to hear that this was your experience with arranging supplemental oxygen. Do you have a pulmonologist or respirologist that follows you? The only reason I ask is because my family GP didn’t know anything about ordering or issuing supplemental oxygen for me either, and deferred everything to my lung specialist.…[Read more]

      • All is well now, but it’s obvious that the whole business of oxygen use and availability is fertile ground for improved education. Maybe there is a YouTube video on this(?).

        • I am glad that everything seems settled with your supplemental oxygen now @roger-wenschlag. I do agree that oxygen services, providers and how to obtain this, especially for new patients, is important to have ongoing training and improved education. 🙂

  • I used to handle liquid oxygen (LOX), servicing Navy airplanes.  In its liquid form LOX is cold (-297 F), and boils into a gas above that temperature. LOX has an expansion ration of 860:1, meaning a liter of LOX will produce 860 liters of gaseous O2.  So, if you had a supply canister of 4 liters, you would have 3,440 liters of gaseous O2 a…[Read more]

  • Roger Wenschlag's profile was updated 2 years, 11 months ago

  • Roger Wenschlag became a registered member 2 years, 11 months ago

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