JillT

I only wish I could buy a mask to wear – thought I’d better start after the new virus scare, but pharmacy tells me they’ve sold out, as have most outlets. They have more on order, but no idea when they’ll get there. Seems like people are panic buying. Yet, I’ve only seen 1 person wearing a mask recently, so no idea who is buying them all. Bit…[Read more]

I have been on a low carb/cyclic ketogenic diet since being diagnosed with Type 2 diabetes in 2012. I put on about 20kg after quitting smoking after my IPF diagnosis in 2009 and that tipped me into Type 2. By going so low carb, it’s almost inevitable that most sugars, high starch veg and processed grains are eliminated from the diet. I quickly…[Read more]

The first reply in this topic refers to the Garmin Vivosmart 4 and the second talks about the O2 vibe. Both measure oxygen saturation. I think that most sleep monitoring systems also measure O2, but best to check the individual device descriptions to be sure.

Apologies in advance if I’m a bit prickly on this subject, but seems to me you’re using “positive” and “negative” in a pretty judgmental manner here. One man’s “negative” can be another’s “realistic”, while “positive” to one person can mean “denial” from someone else’s POV. There’s no ‘one size fits all’ approach to any illness and we shouldn’t…[Read more]

I totally get your reasoning, Pete. That’s exactly how I felt too when I was offered the drugs. They don’t seem to actually improve quality of life, just slow progression. My fear on hearing this was that the end stages of the disease would also be slowed down, drawn out and possibly more difficult as a result. I’m not interested in adding more…[Read more]

My IQoro device just arrived actually 🙂

I’m in Australia, so a very long way from the EU. Luckily, my sister has relatives by marriage who live in Norway, so her SIL managed to order the device and then forward it to me here in Western Australia. Going to start the training process tomorrow. Will let you know if it helps with my reflux/hiatal hernia.

Thanks, Charlene. I’m currently watching it and it seems to be fairly comprehensive, so I’d definitely recommend to other forum members.

I’m currently trying to obtain one of the IQoro devices (currently only licensed for EU countries) which are apparently helpful for reflux and other functions affected by vagal nerve tone. From some of the…[Read more]

Not sure if this is the right spot to post this, but I notice the Pulmonary Fibrosis Foundation Youtube channel have posted a webinar on the subject “Cough 101” that may be of interest to forum members:

@Kathleen-greco – there is probably not all that much research on Metformin specifically to IPF, however, there is a large amount of research because of its prominence as a medication for Type 2 diabetes. It seems to be protective against both heart disease and cancer which are closely associated with Type 2. Even some of the longevity researchers…[Read more]

That’s fine, Charlene. Yes, I tend to copy stuff from Word because too many times I’ve lost posts on various forums, etc. and then had to try to remember what I wrote to re-post when the post gets lost for whatever reason. Thanks 🙂

I keep trying to post a reply and the reply doesn’t work? Error says “Your reply cannot be created at this time” or something like that.

Is there a length limit?

Thanks for replying, Charlene and Cindy.

I’m seeing the respiratory nurse tomorrow to discuss POC options, so will ask about this and pain in general. I get really weird and wonderful (and sometimes fleeting) pain in many places these days. It seems quite bizarre when I try to explain it though. ISTR seeing an article on IPF and chronic pain…[Read more]

I’m not on Ofev, so can’t answer for what symptoms that might cause, but I’ve recently deteriorated after nearly 10 years of living with the IPF diagnosis without many symptoms, though given where I am now, I’d say the last 2-3 years have seen some gradual changes. My diagnosis was incidental to a CT scan for other reasons.

I’ve only been…[Read more]