Forum Replies Created

  • roger-wenschlag

    Member
    May 17, 2018 at 1:40 pm in reply to: Coping When Life with IPF Gets Tough

    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 my approach for a week now. I’ve found that that technique works.  I’m trying not to worry about what might happen and when it might happen.  Strangely, I’ve become more productive and focused in my daily routines as result of my new mindset, i.e. I gt more done.

     

  • roger-wenschlag

    Member
    May 15, 2018 at 9:37 am in reply to: Finding out you need supplemental oxygen

    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 are measured against how well a person with healthy lungs your age, size and weight does on the same test.  So, for example, if you had a DIFF score of 53% you would be taking in only 53% of the oxygen that a healthy person would.

    The FVC score is established similarly.  The FVC stages are: Stage I:  FVC of 70-100, Stage II: FVC of 50-70, Stage III: FVC of 30-50, Stage IV: FVC of 0-30

    My pulmonologist is most concerned about the DIFF score.  I don’t understand why you have to wait until June 19 for the tests, but good luck with those.

    Another issue related to operating at low oxygen ratings is the potential for damage to heart and circulatory system.  If you are exerting and down around the 70’s SP O2, check your heart rate.  You might even feel your heart pounding in your chest.  Not a good thing if you can avoid it.

    When I got the POC prescription I wasn’t too worried about how I would look using it.  What bothered me most was having to cart the thing around to dinner, theater, games etc.  But, I’ve found that most people in the public convey a sense of understanding and empathy, sometimes even opening and holding doors for me.  And, as an old man (77 years),  I take advantage of that.  I’ve also found that in stores and restaurants younger women, my daughter’s age, often give me a knowing smile as if to say, “I’m glad you’re out and about old man.  Have a good day.”

    At any rate, I hope you can find a local PF support group, and share your concerns and seek information from them.  We have a good on in Minneapolis, MN.  Good luck.

  • roger-wenschlag

    Member
    April 24, 2018 at 4:01 pm in reply to: Have you ever used liquid oxygen?

    Here’s an excellent website on all the stuff you nee to know about liquid oxygen:

    https://www.vitalitymedical.com/blog/burt-cancaster-liquid-oxygen-therapy.html

  • roger-wenschlag

    Member
    April 24, 2018 at 1:58 pm in reply to: Have you ever used liquid oxygen?

    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 available, or enough for several hours of use before refilling.  Liquid oxygen warms up before leaving the converter tank, but still feels cool and fresh.  I’m going to start checking into the possibility of switching to LOX because my POC is just barely keeping up with my needs when I am active.

  • roger-wenschlag

    Member
    September 10, 2019 at 10:06 am in reply to: Starting Esbriet

    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.