I’m not trying to be obnoxious, just adding some things to think about. I don’tl know the max output of the series 5, but average resting breath is around 500-600cc, ours might be a little higher. That means about 100-120 ccs of oxygen, of which we absorb about a fifth. Obviously, adding 50 cc of O2 to each breath is a pretty dramatic increase.

3 liters is 50 cc/second, that is approximately you inspiratory time at a resp. rate of around 20, extrapolate from there. At 10 breaths per minute that would be 2 second inspirations and 100 cc.

In response to flow rates: the average inspiration/expiratory ratio is 1:2, so you only inhale about 1 liter of a 3 liter continuous flow. I don’t know if portable demand systems significantly address changes in respiratory patterns like breathing deeper and/faster with exertion. I will say that 3 liters continuous flow on my home unit…

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Always keeping mind that anecdotal, personal assessments are nothing like controlled studies and the present state of on line AI responses are not always valid (A recent study found that about 30% of AI information is false.). That said, there are a fair number of studies showing low-level laser does reduce inflammation in animal studies…

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Any FDA certified medical device will do the job. An important thing to remember is that the expiratory portion of a breath cycle is about twice as long as inspiration, so continuous flow lets you inhale up to 1 liter in a minute, depending on your respiratory rate and depth, the rest is wasted. Always breathe in through your nose and out…

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Solar chargers keep their internal battery charged for longer periods.Nice,but probably overkill for you. A lithium battery will certainly power for longer at a much higher cost. I use group 27 lead/acid deep cycle batteries on my boat, and one of those would probably be enough. You definitely want a deep cycle battery, they’re designed…

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First, not everyone gets severe side effects, those that do, they often fade with time. My sister’s only problem was a loss of appetite

Second, waiting until you are symptomatic means you will never get any better than that. I would love to have had my disease arrested, even just slowed, before it began to limit my activity. It varies, but…

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Idiopathic means idiopathic! There are hundreds of things associated with IPF, but none meet the standard of causality. Genetics is a good example. A set of “marker genes” are more common in IPF patients than the non-IPF public. Many IPF patients do not have the genes. It is, therefore, associated rather than causal. Reasearch is ongoing,…

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The the two drugs have very similar side effects that vary from person to person, so a drug change might work. I am on Ofev and had terrible gi issues for the first year on 150 twice a day. I usually have toast or an English muffin and a 20 or 30 gram protein shake using a plant based protein powder and water 15-30 minutes before Ofev. A…

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A kilowatt of solar power takes a lot of square feet of solar panels. Panel output is rated under ideal conditions, moderate temperature, no shadows, middle of the day, so a 100 watt panel will not begin to keep up with a 1000 watt draw. It would work, but it might be a lot less convenient than you are thinking. A 200 amp hour lead acid…

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I sometimes have tenacious, hard to clear mucous and find that Mucinex 12 hour (Guainefesine ER) and increasing fluids for a couple of days resolves it. Plain Mucinex, not with pseudoephedrine or dextromethorfran

Regarding another question about oxygen and flying, you should definitely consult you pulmonologist, an hour after take off is not the time to discover that you need oxygen. Not needing supplemental oxygen at sea level is not the same as normal. Your lungs have a huge reserve capacity that needs to be lost before you need oxygen. And you don’t…

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Oxygen is about 21% throughout the atmosphere, but air density and pressure decline with altitude. The reduced pressure results in all atmospheric gases being reduce roughly equally. So you are correct in that with a slight correction as to why. Stay within a range that your activity level and atmospheric + supplemental oxygen keep your sats…

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Once again, there are no validated scientific studies confirming any real value. Cumin is one of the few supplements with confirmed anti-inflammatory and anti-oxydent that might have some value for some patients if taken with the two traditional medications. It’s also a lot cheaper.

Not likely, Ofevand possibly mycophenolatr to a lesser degree will slow the progression of the disease. Nothing that might reverse existing scaring is available today. Some meds in very early testing might, but they are years from confirmation and approval. Investigate pulmonary rehab and exercise regularly to the extent you can.

A usually non-productive cough is symptomatic of IPF. Why is your daughter opposed to you taking Ofev? There are only two drugs proven to help if your disease is progressing.

Sarcoidosis/PF, one doesn’t actually “cause” the other. They are both autoimmune diseases manifesting in different areas. If you have RH, sarcoidosis, or other autoimmune disease you are much more likely to develop PF at some point as an extension of you primary disease. Underlying all of these diseases is a malfunctioning immune system.

I just checked current prices for Ofev and Esbriet with my Anthem Advantage and GoodRx. I couldn’t believe my Ofev copay in 2024 would be a bit over $2000/month if I’m not accepted by BICares. GoodRx’s non-insurance price is about $12,000/month. Esbriet generic is as low as $465/month without insurance, about the same as the copay. It’s less…

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Ofev or Esbriet really needs to be discussed with your rheumatologist in addition to your pulmonologist. PF is fairly common with other autoimmune diseases. It is the same process as IPF, it is just associated with auto immune disease instead of being idiopathic. I take a gram of tumeric 500mg twice a day with a little black pepper, (It…

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You might want different insurance. My copay was about $600/month 3 years ago before I was accepted by BIcares. The full price was about $1100 or $1200/month then. Have no idea what it is now, but it is hard to believe that it has gone up enough in 3 years to make the copay double what the med used to cost. I will be in real trouble if I’m…

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Loose bowel movements, frequency, and urgency are common side effects, but not everyone gets them. I had serious issues with 150 BID, and it persisted to a lesser degree with 100 BID. Suddenly, this summer it faded to very infrequent. I haven’t taken Imodium for weeks. My sister has had no problem with Ofev. They can be short term,…

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Great idea to use a cabinet for protector on the flat buttons!

My sister had a combination home unit & and tank filler when her portable concentrator could no longer meet her flow needs. E cylinders are available for about $80 and up on Amazon if you wanted to buy your own. Sometimes we have to adjust our activities to our physical abilities. Shorter hikes more often is an option. I’m still doing OK with…

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I’ve been taking turmeric for several months now with consistently good results. Many, if not most, prepared foods have high inflammatory indices that systemic inflammation and mucous production. Curcumin in tumeric binds both oxidative radicals and pro-inflammatory molecules from your immune system. You can try to isolate and avoid foods…

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Well, it’s been a few months with tumeric and I’m impressed. The volume and viscosity of my mucous has improved dramatically. I’ve settled on 1 gram twice a day with an eighth teaspoon of black pepper mixed into what ever I’m eating. Curcumin is poorly absorbed in the gut and pepper enhances the uptake.

I didn’t mention that I am generally off oxygen when sedentary with sats in the middle to low 90’s, but any extended activity requires 2-4 LPM.

I’m 79 and was diagnosed in 2019. I started oxygen and Ofev right away. I had a CT scan about 10 years earlier for another reason, but the radiologist noted an incidental finding of “a pattern suggestive of IPF” that my medical care team did not pickup on for follow up. So my disease had an extra few years to progress.

I was stable in…

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Around 88 is generally considered the lower limit, but some people can’t get that high. Being chronically much below that can result in slow, progressive brain injury. My father lived in the 80’s%, meaning PO2 in the very low 60’s to high 50’s, from a 2 pack a day life. His cognitive function had deteriorated dramatically by the time he died…

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You have a serious disease that requires serious medication to slow its progression. Both Ofev and Esbiet have unpleasant side effects, but the sooner you start, the less progression of the disese you will experience. Supplements might help somesideissues, but they do nothing to slow the underlying disease. The best course is to take…

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Mucous isn’t exactly part of IPF. A lot of factors can influence its production. Deep breathing exercises like yoga can help clear it. Deep breathing will help keep the restricted areas of your lungs open so the mucous isn’t trapped there. I use an inspiratory spirometer like you get after surgery a couple of times a day in slow 10 breath…

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Not scientific, it’s just an anecdotal report. I’m not big on supplents since most of them just take your money and give you a nice placebo effect, but a few have been studied and are of some benefit, and they don’t don’t usually hurt. With that aside, I have been using cimetadine, guanefidene and flownase for months. After a little… Read more

Graham, I can’t help you with where to go for the epidural/local anesthesia options. In the US it varies from institution to institution and not all providers are comfortable with the options. It is a three way decision involving you, the anesthesia provider and the surgeon, so you need to talk to both of them. It would be beneficial if your… Read more

Funny you should mention it. I had knee replacement, TKA, 8 or 9 years before being diagnosed with IPF. I was desaturating postop in recovery and had a CT scan to rule out a pulmonary embolus. I didn’t have a PE and passed it off as over medicated due to my relative drug naivety due to no drugs, alcohol, smoking and only occasional coffee.… Read more

While it might not feel good, postop deep breathing and coughing can be therapeutic for the lungs. Mention it to you pulmonologist, but anesthesia will probably ask for a pulmonary consult anyway.

This is personal opinion and not medical advice, but I n my decades as a CRNA, nurse anesthetist, I managed a fair number of PF patients, IPF and other forms. Mild IPF is usually straightforward, but still greater risk than generally healthy patients. Some back procedures can be done with regional anesthesia, epidurals, with sedation, but… Read more

Also, your long finger for consistency if possible.

Mine will also occasionally read low. I take it off and put it back on and it reads as expected. These are not the sophisticated oximeters I used professionally and are quite sensitive to the temperature of the finger and very fine tremors. Even the expensive ones are sometimes difficult to work with. I just accept the reading after… Read more

Since it has been 4 years and no drug available, I think it can be dismissed

Incidentally, air pressure drops about 10% per 3000 ft. of altitude, so that’s 10% less air and oxygen in each breath. It became noticeable to me when I was young, healthy, and hiking above about 6000 ft., noticeable but not debilitating. I’ll be exploring my limits more this Fall. All you can do is explore and evaluate. Good luck

If you’re on 5L within a few hundred feet of sea level, you will be struggling at more than a few thousand feet.  How high is tolerable is undetermined and up to you and and your activity level and physiology.
The genetic mutations, like everything IPF, doesn’t mean you will develop IPF.  The mutatations have a higher incidence in IPF… Read more

Think of it as a tree. ILD is at the top and is an umbrella for the other diseases.  PF is a smaller umbrella that incompasses various forms of PF, many of which are among people with other autoimmune disease.  IPF is just a specific form of PF, so the more general terms, ILD and PF don’t matter if you have a more specific diagnosis like IPF.… Read more

High res CT  with pulmonary function test is an established way to get a diagnosis.  I would ask about that.