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… Read more

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.

 

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

 

Following

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

Nasal spray, contraindications with other drugs, max dosages.

Steve,

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

Thanks,

Judy

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.

Judy

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

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.

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,… Read more

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

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… Read more

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

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

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… Read more

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.

 

 

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… Read more

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

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… Read more

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.

This is the one used in the study:
They used 600 mg (4 pills) daily.

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 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… Read more

I’ve been taking 600 mg of EGCG Teavigo by Healthy Origins for about 5 months, each night before bedtime. I make sure to not eat anything after dinner so that I have an empty stomach when I take it. (I take thyroid and another supplement on my early morning empty stomach and didn’t want to mix them.) I saw my pulmonologist last week and… Read more

After I read that Spanish study I got rid of my down jackets, down comforter, and down pillows. But I never thought about furniture. 🙁

John: Exciting news. I also have been taking the same dose of the ECGC for 3 weeks. I don’t see my pulmonologist until August so won’t have any comparison results until then, but feel like maybe I’m getting a little better–not as short of breath. I only use oxygen and test my level when I’m exercising, which isn’t much these days, so I… Read more