Forum Replies Created

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  • judy-fraser

    Member
    October 5, 2022 at 6:03 pm in reply to: Vaccinated PF people and COVID 19

    I tested positive for Covid (two days after getting the bivalent vaccination–much too soon to have any bearing). I’d had all 3 boosters before that. I was so scared of getting Covid with my IPF and have been extremely careful. I’d been on a short trip and plane ride, where I kept my mask on the entire time.

    My Covid was a big nothing. I felt a little tired. That’s all. My pulmonologist prescribed the 5-day Paxlovid treatment, and a day or two after I finished I tested negative. He said that it was a very good thing that I was fully vaccinated and I agree, but we’ll never know, will we?

     

     

  • judy-fraser

    Member
    September 29, 2022 at 3:09 pm in reply to: Wristband Pulse Oximeter

    I’ve been using the thumb based Wellvue sensor for more than a year and find it indispensable.  I’ve checked it at my doctor’s office when they use the finger-tip sensor and the readings match pretty well. I have the trigger point set to 90%, so get a vibration when my O2 drops below that number.

     

  • judy-fraser

    Member
    August 11, 2022 at 2:04 pm in reply to: Stem cell treatment experiences

    Following

  • judy-fraser

    Member
    August 2, 2022 at 2:28 pm in reply to: Portable Oxygen for Paddling

    Following.

    I go kayaking with my portable concentrator and fingers crossed. So far, no spills.

    I should probably get tanks, which I have been avoiding so far.

    I’ll be happy to find some other solution, as I’d hate to have to give up kayaking (or buy a replacement concentrator).

    Judy

  • judy-fraser

    Member
    June 21, 2022 at 4:36 pm in reply to: Zinc in the Role of Lung Fibrosis

    I have been taking 30 mg of zinc for about a year. A doctor (not my lung doctor) advised me to take it to help my immune system So it’s on my list of medications that my lung doc sees, but he’s never commented on it.

    No idea if there’s any connection, but my recent CT scan showed no change from a year ago, which I regard as good news.

    BTW I was diagnosed in early 2019 and am not taking any anti-fibrotics.

    Judy

  • judy-fraser

    Member
    May 17, 2022 at 11:27 pm in reply to: IPF patient symptoms

    I too have the thick mucous. My doc says that’s not typical of IPF, but I sure have seen lots of comments in the forums from other people suffering the same disgusting symptom.

    I would LOVE to find something to stop this annoying coughing.

  • judy-fraser

    Member
    March 9, 2022 at 3:20 pm in reply to: Deep-breathing exercises

    Great recommendations. I’m going to try them. And follow this topic for more suggestions.

  • Well, I turn 82 next month and plan to live with my loving husband at least 10 more years. So I’m hoping for a cure/reversal of the scarring. I was diagnosed 2 1/2 years ago and am not taking any of the meds. My latest CT scan last week showed no appreciable progression and very little since my diagnosis.

    I’m living life to the fullest, enjoying most every day, and hope to keep doing that for a long time. I am on oxygen most days and very happy with the days that I can go without. (I use the Wellue thumb oximeter with the trigger point set to 90 percent. So when the O2 drops, I first try deep breathing to bring the level up, and if that doesn’t work, on goes the O2.) Several friends have told me they are impressed with the grace with which I handle my disability.

    I’m much more careful about Covid than most people I know. I sometimes am the only person in the room wearing a mask if I have any question about others’ vaccination status (and really appreciate my group of friends who I know are also being very careful).

    All we can do is live our lives and keep hoping for a cure. My 2 cents.

    Judy

  • Oh somebody, please answer this. Or tell us how to get into one of the trials.

  • judy-fraser

    Member
    September 1, 2021 at 2:08 pm in reply to: Vaccinated PF people and COVID 19

    I was able to get a 3rd vaccine shot even though I am not on  anti-fibrotic meds. A local grocery store  (Vons, Albertsons) was giving 3rd shots to people that qualify. I went online and filled out their form. For the question about how you qualify, I checked the box that I am immunology compromised, and in the box that popped up asking about your condition, I put Idiopathic Pulmonary Fibrosis. It allowed me to make the appointment, no further questions asked when I showed up for the shot, and got my vaccine. Two more days until my 2 weeks and I’ll feel relatively safe again.

    Judy

     

  • judy-fraser

    Member
    August 10, 2021 at 6:18 pm in reply to: Choosing a Portable O2 concentrator for air travel

    Bill Kelly,

    I did not give any advice. I told him of my experience. I believe that’s what he was looking for.

    I have never given anyone advice here.

    Judy

  • judy-fraser

    Member
    August 10, 2021 at 3:52 pm in reply to: Choosing a Portable O2 concentrator for air travel

    I purchased an Inogen One G5, which is actually a bit smaller than my old G3. It goes to a setting of 6, which doesn’t sound like much more than the top setting of 5 on a G3, but it makes a huge difference to me.

    Medicare would pay for a G3 but not a G5, so I purchased it myself. You cannot take tanks on a plane so I just bought the newest and most powerful POC they make. I was hesitant to put out the money without first trying it, but was told by my supplier that I could return it within 30 days. After I tried it and liked it, I asked to order an additional battery and charger, but my supplier suggested that I buy it from Amazon–same price and free shipping, whereas Inogen charges shipping.

    I’m able to keep my O2 in the 90’s even walking around (slowly) using a setting of 6.

    I’ve read that when you get to your destination you can usually rent tanks from a local supplier, so you just need the POC for the plane.

    Good luck and happy flying.

    Judy

     

  • judy-fraser

    Member
    December 1, 2020 at 6:29 pm in reply to: Stopping a Runny Nose When Using Supplemental Oxygen

    My lung doctor prescribed Ipratropium Bromide nasal spray, which I understand is generic for Atrovent. This has nearly stopped my runny nose and made it much easier to use oxygen.

  • judy-fraser

    Member
    October 27, 2020 at 3:54 pm in reply to: EGCG Green Tea Extract
  • judy-fraser

    Member
    October 13, 2020 at 6:35 pm in reply to: EGCG Green Tea Extract

    I have been taking 600 mg of ECGC for 6 months. Just had a CT scan and breathing tests; my CT scan showed no progression in the last 6 months and my breathing was slightly improved. But how can we know if it was the ECGC that caused the improvement? What would have been the result if I hadn’t been taking it? For that matter, how can anyone taking any of the other meds know what would have been the outcome if they hadn’t been taking it? We’re all in some giant experiment.

  • judy-fraser

    Member
    September 8, 2022 at 3:43 pm in reply to: oxygen tubing

    Mike, do you have an Amazon link for the new ones?

     

  • judy-fraser

    Member
    June 22, 2022 at 2:25 pm in reply to: Zinc in the Role of Lung Fibrosis

    Nasal spray, contraindications with other drugs, max dosages.

  • judy-fraser

    Member
    June 22, 2022 at 10:18 am in reply to: Zinc in the Role of Lung Fibrosis

    Steve,

    Could you provide references/links for this info? I can’t find it.

    Thanks,

    Judy

  • judy-fraser

    Member
    May 25, 2022 at 5:02 pm in reply to: IPF patient symptoms

    My doctor prescribed iprapromium bromide nasal spray for the nasal dripping. It helps immensely.

  • judy-fraser

    Member
    August 13, 2021 at 11:48 am in reply to: Choosing a Portable O2 concentrator for air travel

    John, my oxygen needs increased in the last few months. But I have taken the G5 on a couple of very short flights (~1hr). For those flights I was able to sit down, no walking around, with my POC in the overhead. Didn’t check my sats. I don’t think I could do that now, but thanks to the delta variant, I won’t be trying that any time soon. 🙁

    Judy

  • judy-fraser

    Member
    August 13, 2021 at 10:02 am in reply to: Choosing a Portable O2 concentrator for air travel

    I haven’t had any problem triggering a pulse with either the G5 or G3. But the G3 just wouldn’t give me enough oxygen to bring my level up to the 90s.

    Judy

  • judy-fraser

    Member
    August 12, 2021 at 7:51 pm in reply to: Choosing a Portable O2 concentrator for air travel

    I wasn’t aware of the Simply Go. I just looked it up and it sounds like a very good solution.

    At the time of my last plane flight I just used the POC going and coming from the plane, but seated I did not need it and put it in the overhead compartment. My oxygen needs have increased since then and I will probably need to use it during the flight. So far, the G5 has met all my needs, quickly bringing my low 80s up to the high 90s. (The G3 could not do that.)

    I hope you’ll keep in touch and let us know what you decide to use and then how it worked for you.

    Judy

  • judy-fraser

    Member
    August 12, 2021 at 3:52 pm in reply to: Choosing a Portable O2 concentrator for air travel

    For me, they always just ask: Do you have enough for 1 1/2 times length of flight? I say Yes and they’re happy.

    But I’ve found that recharging is very slow. If I put my backup battery on my auxiliary charger and use a full battery on my G5, I’ll use up the battery on the POC before the backup is charged. Pretty much, if I’m sitting down, I’ll keep the POC charger connected most of the time.

    Judy

     

     

  • judy-fraser

    Member
    August 11, 2021 at 5:37 pm in reply to: Choosing a Portable O2 concentrator for air travel

    John,

    Sitting still w/o oxygen, my O2 level is 93 or 92. Walking just a little ways I quickly drop to the low 80’s. With my G5 on setting 6 I can walk around the house and keep it at 97-98. At that point I usually drop the setting to 4.

    As I said, we bought the G5 because we can’t take tanks on airplanes, and we WERE planning to do lots of traveling. Until Delta. 🙁

    Judy

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