I’ve been working with Bob Doane (mentioned by the original poster here) and Chinese herbs since April. My results have been mixed. I seem to have more energy (as observed by my wife and a number of other people). Swelling in my ankles, after a long time, has gone down. My shortness of breath and O2 needs have not changed, though, at least…

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I have just had a phone consultation and will be working with Bob Doane to see if he can help turn around my PF. I’ll report back when there’s something to report. Thanks for the tip.

Thank you for this. The silicone strip just broke on mine (after over a year), and I was planning to buy a new one. That Walmart price is a great deal, and I just took advantage of it.

I’m being seen at BWH Lung Center in Boston, and I think the care teams are very good. (MGH and BWH have merged, but they still have separate lung centers, I  believe.) I have not met the transplant teams, except for a preliminary interview.

I wonder if any of these centers in the NE have adopted (or tried) the less invasive transplant… Read more

I have been taking 400 mg of EGCG/day since reading about that small study reported in NJAM, maybe 8-9 months ago. No effect on my weight, alas; I would like to lose some weight. I started at 600 mg, the amount used in the study, but cut back because I find it a little upsetting to the stomach. I am also taking Pirfenidone (Esbriet). My… Read more

I bought the O2Totes backpack on Etsy. I returned the first one as too small and got the sage-colored one that has a little bit of storage space–basically enough to carry the charger if you need it and the 12V charging cable. That definitely comes in handy,

The biggest problem with these packs is that most of them are made for… Read more

BTW, if you’re traveling by air with a POC, plan on spending extra time going through TSA while the agents figure out how to screen you.

I went on home O2 initially because of need for it while exercising. My health insurance pays for the rental, because it’s prescribed by my pulmonologist. At home I use 4LPM continuous while active. If you can get that covered by your insurance, you might also be able to get a home refill system covered. That gives me a small tank and a… Read more

Folks, I think it would be helpful to everyone if, when referring to a POC’s output, you did not say 5L or 6L or whatever. Saying this often leads to confusion. None of them give 5 liters or six liters per minute. Because of the pulsing, it’s more like 1.xx liters per minute at high output.

Just remember, the 5 or 6 are just setting numbers,… Read more

Frank — For me, the smaller tanks are a better solution anyway, at least if you have a home-fill system (definitely ask about that). The POC is mostly for times when I think I’ll need greater time duration than a tank allows, since it can be plugged into car 12V or home 120V.

This is a very good point, and I never thought of it until you said it:

 When using a POC, please be aware that most likely all of the ones currently on the market DO NOT filter out VIRUSES… Therefore, those POC’s are taking O2 directly from the surrounding air and delivering it directly into your lungs unfiltered. This completely negates the…

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I have used my Inogen solely for up to two weeks on a trip where I was unable to arrange for a stationary unit. I didn’t love it, but it served. On a recent 3-week trip to Puerto Rico, I just called around until I found a place that could rent me a 5LPM unit for the duration. It worked out fine. Cost a couple of hundred bucks.

There can be other factors at play, as well. It wasn’t until a year after my diagnosis that I was told to get an echocardiagram, to see if I had pulmonary hypertension. That resulted in further testing, which revealed that I have a small opening between the right and left atria of my heart, resulting in less blood going to the lungs than should… Read more

What others said; you definitely would do well to have O2. Re the portable concentrators, none of them provide the flow rate of a home unit. Stephen, you mentioned the Caire unit, but it does not provide up to 5 LPM. Here’s a quote from their website:

“With 5 settings and up to 1050mL of oxygen per minute,” which means it has an arbitrary… Read more

Yes, I am on a home-fill system provided by the company that supplies my big concentrator. It works quite well. I have a small tank, good for about an hour at pulse-5, and a larger tank that lasts a good bit longer. Either one can go in a regular backpack, with some bubble wrap jammed around it to hold it steady. It doesn’t entirely replace… Read more

>> Inogen One G5 portable concentrator that goes to 5 liters on demand

Again, that’s not really 5 liters. It’s just setting 5, and the actual amount delivered is considerably less than 5 L. It’s very confusing, and I wish they had come up with a better way of measuring these things. Even my pulmonologist was confused by it.

 

Randy, I wonder if your Inogen is malfunctioning. Have you seen any alerts on the screen? I recently had to replace the sieve columns in mine. (Very easy to do. I bought mine directly from Inogen.) There’s a very distinctive icon that appears on the screen when the columns are spent.

Do you see the little green light flash every time you take a breath?

Your Inogen goes to #6. That is not the same as 6LPM, and in fact is quite a bit less, because it is pulsed delivery. (I have the same model.) There is no direct correlation between LPM and the numbers you see on pulsed devices. They are different scales.

My own experience suggests that 5 on my Inogen does not give me as much boost as 4LPM on… Read more

I’m 73 and have been on Pirfenidone (Esbriet) for a few months now. I had trouble at first, mainly with fatigue and my sleep being messed up. I paused at 6 tabs/day, cut back to 4 for a couple of weeks, and then started increasing. It went better the second time, and I’m now taking the full dose of 9/day. I still get some fatigue, but overall… Read more

We just purchased (for two apartments) two of these filters from National Allergy:
https://www.natlallergy.com/advanced-hepa-air-purifier.html

It’s a less expensive (store-brand, essentially) version of the Austin filter that an air quality inspector recommended for… Read more

I did not see a Dropbox link to the recording of the session. Could that be put up here for all to see, please? Thanks.

 

I have a similar cough. It’s the same now as it was before I started Esbriet about 2 months ago. It has improved a little since I got serious about following at least one of the things they tell you about reflux: I no longer eat within a couple of hours before going to bed. (Dang.) I also notice that I’m more likely to start coughing if I’m… Read more

My own solution doesn’t seem to have been mentioned. I do have an Inogen 5, and like others, I quickly learned that it was not enough for active outings such as walking the dogs. I’m generally at 4 LPM at home when active, and settings of 4, or even 5 or 6, on the Inogen are not the same. The numeric settings on the portable concentrators are… Read more