Can’t say my situation has resolved. I’ve been on supplemental oxygen for just over a year. I’ve never taken either of the IPF drugs, so that can’t be part of the issue in my case. I’ve basically tried to ignore any dental because every time I get a checkup or cleaning, dentist isn’t finding anything problematic. I also find my teeth are… Read more

I’ve never been aware of changes as they happen – just periodically notice that they’re worse than they used to be. I always think of miniature drumsticks when I look at them in profile. Also ran across a recent issue that had happened previously but didn’t recognize the cause at the time. I barely have fingerprints left – I cannot set up my… Read more

Totally agree with Wendy. Unless your mother is incapable of making decisions about her own medical care, the doctor should be discussing it with her first, not you. I would ask your mother what the doctor has told her about her own situation. Seems very odd to me too that he would approach you and not her.

My diagnosis was completely incidental and unexpected – in 2009 I had a high res CT scan (I don’t even remember the reason for the scan) and the UIP pattern was so obvious in the scan that I was diagnosed from that. I don’t recall having any symptoms at the time. Looking back at older records, I had a chest Xray from 2003 that mentioned… Read more

Glad you clarified, Michael. I’ve recently been diagnosed with a few cardiac complications stemming from my IPF, so I definitely won’t be trying this supplement! Pulmonary hypertension is a quite common comorbidity of IPF and high caffeine could be quite dangerous, I would think.

Just been reading an interesting article on the topic “Can Low Carb Help Lung Disease?” – from the “For Doctors” section of the Diet Doctor website, summarizing a lot of the research on the topic, especially relating to COPD, but other conditions as well:

https://www.dietdoctor.com/low-carb/for-doctors/lung-disease

I tend to agree with Karen. I’ve been having all sorts of weird symptoms, both at the high and low ends of saturation. My respiratory nurse believes some of the symptoms relate to too much oxygen with resulting hypercapnia/hypercarbia. When I looked it up, the articles say people with PF/IPF can get this. I believe it’s more common with COPD… Read more

Absolutely agree, @gregldixon. I’ve heard a few interviews with Katherine Eban outlining how the book arose and the research she put into it – it was like reading a story about organized crime. Absolutely astounding levels of corruption, and not just in India. I haven’t read the book myself yet, but I imagine it reads like a gripping… Read more

Australia went into major lockdown today. I think all states have now closed their borders, all but essential services told to close, etc.

On a personal note: Decisions, decisions. It’s that time of year again when our flu vaccines start and I’m seriously considering not getting it this year. A couple of facts swaying me against relate to… Read more

There have been several twitter threads by apparent medical staff on the front line of the Italian outbreak that are frankly terrifying. The hospital systems seems to be collapsing under the strain of cases. The “triage” based on available treatment options is not at all reassuring to those over 60 or with other comorbid conditions. One… Read more

Has anyone thought about wearing surgical gloves when you leave your own house? Would it be effective? It occurred to me that it might be helpful for people having skin reactions to all the hand washing. Also would have the advantage of being a constant reminder not to keep your hands away from your face. Then discard the gloves before… Read more

We’ve had a completely ludicrous response by the public in Australia, given that there’s been only one fatality thus far. Panic buying with supermarket shelves stripped bare, etc.

I’ve made an effort to freeze a bit more food than usual, bought a few more cans and long-life milk so I can at least make yoghurt, but other than that, I don’t… Read more

I think the suggestion @charlene-marshall made a while back might be a good plan for all of us – wear a mask with a sign “it’s not me, it’s you”.

I’m absolutely stunned by the stories I’m reading online about the racist outbursts and absolute ignorance being shown by moronic people. I fear for all society with such idiocy becoming the… Read more

I don’t think research has the emphasis here in Australia that it has in the US or elsewhere. I’ve tried to contact two different lung research bodies here using the ‘contact us’ pages on their websites after your previous post about patient registries. Had no response from either. I would very happily donate my DNA, lungs, whatever to… Read more

I still can’t find any information that indicates the drugs actually do anything to extend life span. They also seem to do nothing to change people’s quality of life. I’ve never been convinced of the need for me to take them, especially if taking additional medications to control the awful side effects would also be likely. I’ve suffered… Read more

I find codeine to be generally very effective and it doesn’t have a sedating effect on me, so I’m still able to drive and do all daily activities without having to worry about safety. Of course, nothing works 100% so every now and again, I’ll still have a nasty bout of coughing. It’s very exhausting 🙁

I think it’s government policy in Australia for all seniors to be vaccinated, plus all “at risk” people and those shots are free. Most GPs have flu vaccination clinics as soon as they can access the current year’s release and remind patients about it. It’s also now also available via most pharmacies, though I believe you have to pay for… Read more

I think it’s very recent research done since the entire genome was decoded. GWAS is an acronym for Genome Wide Association Studies. I wasn’t really aware of the research myself until I watched a recent video from the recent PF Conference:

I went looking for studies on PubMed and found a study… Read more

Very sorry for your loss, Wendy.

I found your observation about developing an interest in genealogy when coming to terms with our own mortality very telling – exactly the same thing happened to me. I’ve never had any religious or spiritual beliefs – and prior to my diagnosis, no interest in family history etc. Once I was diagnosed with… Read more

I’m not sure if there is a registry in Australia.

On the subject of research, you might find this article of interest, Charlene. Posted at our national news organization in response to long term effects of our recent bushfires. Interesting, but very concerning… Read more

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.… 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… 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… 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… 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… 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… 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… 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… Read more

I’m wondering if anyone has similar issues with dental pain/issues?

I seem to get quite frequent pain in both jaw and individual teeth, even becoming convinced on a few occasions that I have an abscess brewing including painful lumps under the gum, etc.  Yet when I visit the dentist and they take XRays, no infection or signs of issues are… Read more

When I did a bit further research after the throwing up incident, NAC is supposed to be particularly helpful for COPD  and other phlegmy lung conditions.  My experience of IPF is that my cough is primarily dry and unproductive, so it may not be a useful supplement for me anyway.

The dosage was 600mg 3x day. I think at various times I would have taken it with other pills and sometimes not. Don’t remember anything different about the day that it made me throw up, but it was within about 15 mins of taking it. When I googled for side effects, both the smell and nausea were mentioned so I decided to stop taking it.

 

My personal experience with taking NAC wasn’t very positive – firstly, the smell that emanates from the capsules is revolting and after a few weeks of taking it, one day with almost zero warning it made me violently nauseous and resulted in vomiting. So, the remaining capsules I had went straight in the bin! I also had a non-stop headache while… Read more