Forum Replies Created

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  • jillt

    Member
    October 28, 2020 at 2:39 am in reply to: Dental Issues

    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 extremely sensitive to dental cleaning and it only seems to get worse over time.

  • jillt

    Member
    September 2, 2020 at 4:30 am in reply to: Finger clubbing

    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 smart phone to recognize any fingerprint. Something similar happened years ago at a job where a thumbprint was require to clock in/out. Would have numerous failures. My fingers are so “fat” that the ridges are barely visible (except when I get very high blood glucose when they change to looking like I’ve been soaking in water for hours and look all “pruney” instead).

    I had the clubbing a long time before I was even diagnosed with IPF – in fact a co-worker who’d known someone who died of IPF mentioned the symptom to me about a year before I was diagnosed via HRCT. I didn’t take her seriously at the time; it was only when I was diagnosed that I thought, ‘oh wow, she was right!’

    Not sure if it’s age or shape of the nails now, but I’ve developed very strong vertical ridges as well and the nails themselves are very brittle. I have to keep them trimmed very short or they break very easily. Toe-nails are very curved like you describe and I have to keep them short as well or I sure they’d end up becoming ingrown – worse on my smaller toes than the big toe.

  • jillt

    Member
    July 9, 2020 at 9:53 pm in reply to: Hospice Care

    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.

  • jillt

    Member
    June 25, 2020 at 7:42 pm in reply to: Lag Between Recognition of IPF Symptoms & Diagnosis

    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 from previous bronchitis attacks that pulmonologist thinks may have been early indicator of IPF. Apart from the dry cough that I mostly wasn’t aware of because of being on long term paracetamol/codeine for back/hip pain, I only really started having life limiting symptoms about 18 months ago. The deterioration since has been pretty rapid and inexorable. On oxygen for about 10 months now.

  • jillt

    Member
    May 5, 2020 at 5:36 pm in reply to: EGCG Green Tea Extract

    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.

  • jillt

    Member
    April 17, 2020 at 2:02 am in reply to: Eliminating Processed Sugars from your Diet

    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

  • jillt

    Member
    April 17, 2020 at 12:28 am in reply to: Oxygen Questions

    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 CF, but is possible for us as well. The symptoms I particularly believe to be caused by Co2 retention in my case are increased number of headaches, red nose/cheeks, chest pains and a feeling of pressure and “doom” (only word I can think of to describe it) at the base of my throat/breastbone – at times I’ve thought I’m having a heart attack; other times I’ve thought it was a really bad reflux attack.

    Because of this, I’ve recently had a series of chest/heart imaging done. Still waiting for results of a CT contrast angiogram, but the HRCT of chest found ‘severe’ fibrosis (as opposed to the prior 2017 scan that was still ‘mildly progressive’) and the echocardiogram found no significant heart issues but did identify pulmonary hypertension. Meanwhile, I’ve also been experimenting with reducing my oxygen levels depending on saturation and removing the cannula if I find myself above 95%.

  • jillt

    Member
    April 10, 2020 at 4:08 am in reply to: Use of medications bought from other countries

    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”, yet it’s all true.

  • jillt

    Member
    March 23, 2020 at 8:13 am in reply to: Coronavirus Lockdown

    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 exacerbation that caused me to end up on oxygen after having both the flu vaccine and a pertussis/diptheria vaccine within 1 month of each other this time last year. Prior to that, I’d been getting regular flu vaccinations without issue for 9 years.

    Also there seems to be a lot of speculation about it possibly making Covid-19 more dangerous, which I really don’t need. All in all, my current thinking is that I won’t have it. Following link from the British Medical Journal is what convinced me the flu vaccination might not be such a good idea this year:

    https://www.bmj.com/content/368/bmj.m626/rr

    Also have a cardiology review scheduled next week, so will be talking to the doc about whether to stop my ARB hypertensive medication after the figures that are coming out of Italy about ACE/ARB medications.

  • jillt

    Member
    March 10, 2020 at 2:13 am in reply to: Corona virus

    There have been several twitter threads by apparent medical staff on the front line of the Italian outbreak that are frankly terrifying. The hospital system 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 referred to CT results on affected patients as uniformly “bilateral interstitial pneumonia”, a term that has very strong and frightening associations for those of us with IPF/UIP. The other worrying aspect is that even if one manages to survive the virus, there is possibility of long term lung damage as can occur with other respiratory viruses.

    I plan on keeping myself as isolated as possible for as long as possible. Online grocery shopping sounds safer than going out to shop. I’m even wondering about my weekly pulmonary rehab as the sessions take place in a community health centre where a number of people of all ages congregate and present for appointments for all sorts of medical conditions. I’m beginning to think the risks probably outweigh the benefits for the foreseeable future.

    These front line stories have been a real reality check for me and I’m starting to get very afraid whereas up till now I was taking a more fatalistic approach to it.

  • jillt

    Member
    March 5, 2020 at 7:02 pm in reply to: Corona virus

    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 to keep your hands away from your face. Then discard the gloves before entering your own environment again.

    Also, wearing cotton gloves over barrier type creams can be helpful for protecting broken skin and keeping the skin moisturized.

    Personally I’ve never been convinced that all the hand washing outside of medical settings is all that effective, especially as it’s disruptive to your protective skin microbiome as you’re also killing off good/protective bacteria that help keep pathogenic bacteria in check. Ditto for antibacterial products in general. The hygiene hypothesis makes sense to me. Might be an unpopular opinion, but <knock on wood> it’s served me well thus far, along with keeping up with regular supplementation of Vitamin D3, K2, C and zinc. Can’t remember the last time I had an upper respiratory tract infection, long may it continue 🙂

  • jillt

    Member
    March 3, 2020 at 3:00 pm in reply to: Corona virus

    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 what else we can really do. Self-isolation will be difficult, but not that much more onerous than how much time I already spend at home since going on oxygen. Avoiding crowds will be key, I think. If and when we get a lot more cases will be the time to stock up on medications etc. I’m sure we’ll get warnings if there are business closures beginning.

    The “Keep Calm” posters are probably more appropriate now than ever.

  • jillt

    Member
    March 3, 2020 at 2:46 pm in reply to: So upset

    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 common. It makes me believe the studies about loss of IQ and shrinking brains. <sigh>

    Definitely see the security in the complex and let them know what happened. It’s unconscionable.

  • jillt

    Member
    February 27, 2020 at 5:39 pm in reply to: fits of cough

    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 but the lack of interest so far has been pretty underwhelming. Same deal when I spoke to one of the hospital consultants prior to moving to a private practitioner.

    I’ll admit though that I’m less willing to engage in research while I’m still alive – because almost all would require constant lung function tests, something I’m absolutely unwilling to do as I’ve developed an almost phobia about the tests and the debilitating coughing involved over the past 10 years. I finally just said I didn’t consent to any more tests besides 6 minute walk tests and scans.

    By chance, the PF Youtube channel have just posted a whole series of talks from the recent conference on patient registries and I’m currently watching them.

  • 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 gastrointestinal symptoms for many years without resolution, so adding something else to the mix felt too daunting, especially without tangible quality of life gains.

    My experience has been feeling like I’ve been hounded to try and force me into taking one or the other of them since they were approved for use. It’s been a frustrating experience on both sides, to the point where I discharged myself from the government hospital service I was attending in favour of a private pulmonologist who would actually listen to my wishes as the patient instead of covering the same ground at every visit about why I wouldn’t take them. So, I guess it must vary between countries and probably even doctors. In general, I’ve found you really need to be your own reseearcher and advocate when it comes to all things health. So much medicine these days seems to be of the “tick box” style.

  • jillt

    Member
    February 27, 2020 at 2:19 pm in reply to: fits of cough

    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 🙁

  • jillt

    Member
    February 17, 2020 at 3:00 am in reply to: Getting the Flu Shot: What is Your Doctor’s Opinion?

    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 available via most pharmacies, though I believe you have to pay for their vaccinations.

    I think the controversy is more about how effective they are; not re getting the shots at all – except of course of the anti-vax brigade nonsense. But anyhoo, I think I’ve aged out of any potential fear of autism by my ripe old age 🙂

  • jillt

    Member
    February 9, 2020 at 5:47 pm in reply to: When we lose a loved one while facing our own mortality

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

    https://www.youtube.com/watch?v=DJB63GxJlrA

    I went looking for studies on PubMed and found a study specific to ILDs and found the following paper (2019), then used the loci to check against my raw data from genetic tests I had done: https://err.ersjournals.com/content/28/153/190053

  • jillt

    Member
    February 9, 2020 at 3:21 pm in reply to: When we lose a loved one while facing our own mortality

    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, retired and with more time on my hands, I developed the interest when my sister asked me to do some research for my elderly aunts (who have now passed) – it was utterly absorbing for a long time, I guess until my symptoms became ever-present and fatigue trumped fascination. Agreed also that it’s so much easier now than when one of my uncles did his research back in the 80’s with so much online and at our fingertips.

    As part of it, I also had my genetics done with both Ancestry and 23andme. Recently found a paper on the GWAS studies identifying risk alleles for IPF. Although not all of the genes are tested in those ancestry based protocols, of the ones that were tested, I had risk readings for IPF on almost all that I got results for. Quite a revelation for me, though as far as I know, there’s no family history of the disease prior to me.

  • jillt

    Member
    January 29, 2020 at 6:09 pm in reply to: Prognosis Predictions for IPF Patients

    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 as well.

    https://www.abc.net.au/news/2020-01-29/bushfire-smoke-could-alter-respiratory-health-for-generations/11892520

  • jillt

    Member
    January 28, 2020 at 9:29 pm in reply to: The Awkwardness of Wearing A Mask In Public

    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 annoyed that they didn’t actually keep any in reserve for immune compromised people who have a greater need, but maybe I’m being unrealistic.

  • jillt

    Member
    January 24, 2020 at 1:22 am in reply to: Eliminating Processed Sugars from your Diet

    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 lost the weight I’d gained, reduced my A1c to non-diabetic levels without medication and have maintained the weight loss for about 7.5 years now. Over the past few years, I’ve also incorporated a time restricted eating regime where I eat 2 meals a day within an 8 hour window.

    Must admit I’ve been a bit more relaxed with my sugar control as I’ve lost more weight since my exacerbation earlier last year. I think the theory about increased metabolic rate must be correct as I hadn’t changed anything about my diet, yet still lost about 4kg without trying prior to going on oxygen. I think weight has stabilized again since starting on oxygen, but I’m now wondering if I shouldn’t get more strict about diet again. I probably average around 100g a day of carbs (including sugars) now, compared to the 60-70g I’d previously been eating. I’ve been telling myself the ice cream (my kryptonite) indulgences aren’t harming me, but I have to wonder.

    There’s a guy who goes by the moniker “COPD Athlete” and his podcast has a lot of information on why a ketogenic diet is ideal for people with hypoxia. The interviews with ketogenic experts and researchers are well worthwhile listening to. I also recall reading about Bill Vick (“PF Warrior”) in a book about Paleo diet success stories after my IPF diagnosis.

    I’ve often wondered if being on the low carb/keto diet helped stave off my progression to almost twice as long as the average time frame, but of course will never know that for sure.

    I’d highly recommend the diet for both weight loss and – probably even more importantly – easy weight loss maintenance. The main thing is to commit to it as a permanent lifestyle change, rather than viewing it as a diet.

  • jillt

    Member
    January 15, 2020 at 3:14 am in reply to: Utilizing Technology While Living with Pulmonary Fibrosis

    @johns

     

    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.

    The Vibe seems to be more expensive than the Garmin.

  • 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 try to tell others how to deal with their diagnosis. Depending on their life experience/stage and comorbidities, they will see things through their own lens. We’re all dealing with this the best way we know how. JMO.

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