[Shawn S Fahrer]

You will be told by your doctor to go on either one OR the other. Since (under my insurance plan), the generic form of esbriet (pirfenidone) is ~ $80 per month (while the non-generic Ofev can run into the undreds of dollars per month if not more, even if you ARE insured since it is still VERY EXPENSIVE), you will be probaly told to start pirfenidone as the generic to ‘Esbriet’ as opposed to Ofev (unless for some reason, you wind up having an alergy to pirfenidone and are forced to used Ofev as an alternatice at a higher up front cost to you).

I have had no side effects from it — but remember that I am a sample size of ONE….

[Shawn S Fahrer]

The difference is simple: let’s quickly divide 25 / 40: this equals 62.5% ‘efficiency’ — while this may NOT be his oxygen saturation (because if it was, he’d really be in trouble since normal saturation is 99 and even 90 — my baseline — has raised the eyebrows of my PCP), it’s still quite bad. In other words, what is being put in (by the machine) is, let’s say 40 units of oxygen (per unit of time), but what is able to be used by your dad in this case is 25 of them (in that same amount of time). The other 15 units may actually be TRAPPED in his lungs (by any phlegm that he may have that is literally blocking the alveoli in his lungs)– the term is literally ‘air trapping’ and can be relieved by ‘belching’ (as I often do after throwing up some of my phlegm): does your dad do any of that? I hope so!

In other words, for your dad to actually get 40 units into his lungs. he would need to either raise the oxygen level of the respirator to 64 units [25 / 40 = 40/ X; to solve this first degree equation simply cross multiply: giving you 25 X = 1600. Dividing 1600 by 25 gives you 64 units of oxygen as your final answer].

It may not be safe to raise the oxygen level of the ventilator to 64 (because pure oxygen at that flow level may damage the mucus membranes in his nose and/or trachea), so your dad’s only other option is to BREATHE HARDER AND HARDER in order to make up for those lost 15 units of oxygen (which probably does him no good either, since it’s unlikely that he can make up that much (and this may also be damaging the mucus membranes in his trachea or even lead to a small hernia near his navel)….

Is he able to expel any phlegm from his lungs? If not, why not? At least in my situation, doing so KEEPS ME OFF OF SUPPLEMENTAL OXYGEN (and may do wonders for your dad even if his case is even more serious than mine). Go back to his Dr’s at the hospital and find out if he is being encouraged to at least TRY to expel his lung phlegm at least DAILY if not more often than that (usually by albuterol that is often mixed with his oxygen, although I should note that it has had mixed results on me).

It maybe possible that he doesn’t need 40 units of oxygen to be ‘OK’ (and 25 is OK for him to maintain a SEDENTARY LIFESTYLE lying in his hospital bed all day), but to get those 25 units into him, he needs to have 40 units put in at the start (but if his lung phlegm were reduced by any means necessary, he may wind up needing less supplemental oxygen while relying more on the oxygen that naturally occurs in the air).

 

[Shawn S Fahrer]

It may not be the sugar that would be a problem — it’s the caloric content vs nutritional content. Unless you are 1) rather thin NOW and 2) relatively active, I can’t recommend them except as a meal REPLACEMENT once in a while — not daily. Since with IPF, it’s normally hard to exercise, any weight gain may wind up in the places that can lead to cardiovascular problems above and beyond the pulmonary problems. Try not to do it — you’re just better off eating REAL FOOD (even if your days of being “fat” are over)….