JillT

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 damage…[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 and…[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 “whodunit”,…[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 the…[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 doctor…[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 entering…[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 see…[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 more…[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 research…[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 with…[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 their…[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 specific…[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 IPF,…[Read more]