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    • #23356

      It is likely impossible that you’ve not heard about COVID-19, a novel coronavirus that is making its way around the world. Information about it has surfaced on every social media platform there is, along with multiple news channels, TV stations and any/all travel advisory sites. Unfortunately, much of the information circulating about COVID-19 is not credible, and is causing panic among many around the world. Please ensure you are obtaining information on this virus from credible sources such as: the World Health Organization (WHO), the Center for Disease Control & Prevention (CDC) or national government websites such as Health Canada.

      While widespread panic may be an overreaction for the general public, those of us with idiopathic pulmonary fibrosis (IPF) do have to be extra careful. This is because of the respiratory component of the coronavirus and the impact it could have on already-compromised lungs. I’ve been feeling frustrated as I watch the world respond to COVID-19 and was thinking about writing a column about this very topic. However, my amazing colleague Christie Patient who is a caregiver to her Mom since she received a double lung transplant beat me to it. Read her new column titled: Public Panic Over COVID-19 Harms Vulnerable Communities.

      Fear is driving people to extreme behaviours, which are impacting those of us who do need to take extreme precautions.

       

      Do you feel like the general public is overreacting in their response to COVID-19, especially those buying excess amounts of hand sanitizer and face masks? Currently the CDC does not recommend masking unless you are already sick or have an underlying condition, but it doesn’t appear anyone is listening to those recommendations.

       

      Let us know your thoughts on this topic. Oh, and regularly wash your hands!

    • #23392
      Jerry Genesio
      Participant

      Unfortunately, there are two extremes: those who panic and hoard depriving others of protection, and those who do nothing to protect themselves or others because they don’t pay attention to the news. My wife and I keep a small supply of disposable facemasks on hand, but I’ve been unable to find any N95 masks in stores or online. I did find some facemasks that have a pocket inside that takes a disposable N99 carbon filter so I ordered six of those with 50 replaceable filters but there’s an estimated month before delivery. I’m hoping they’ll be here if and when I need them. We live in Maine and as of last night the Maine CDC confirmed there have been no positive COVID-19 tests here yet. Of course, our population statewide is 1.3 million and those test results represent only 20 people so far. Not only has the Trump administration done a terrible job of preparing for this crisis, but he also makes it much worse by referring to it as a “hoax”. Then there are his supporters like Rush Limbaugh who broadcast that COVID-19 is nothing more than “the common cold” weaponized to hurt Trump’s reelection campaign. The FCC should step in and remind these people that the First Amendment does not give someone the right to shout “FIRE!” in a crowded theater.

    • #23419
      Miltont
      Participant

      My Wife and I have not changed our lives. My children and grandchildren keep urging us to stay indoors but that is not going to happen. I wore a P2 rated mask to screen out smoke during the recent bushfire crisis here in Victoria and NSW which was prudent but I don’t wear one now. I always practise good hygiene, washing my hand when I cone hom I and use the hand sanitisers when visiting and leaving hospitals and urge everyone to do the same. Eventually COVOD19 will be as common as the cold or more so I expect but what we have to try to do is stop s massive overload of the health care systems by slowing its progress.

    • #23423

      Hi Jerry,

      I agree with you, and as the virus seems to circulate and spread wider, the two extremes seem to be getting worse by the day. It’s so tough for me to hear people say, “it is just a cold, relax and wash your hands”. They are privileged to be able to say that, not having any other underlying health condition but for folks like us, it wouldn’t just be a cold. I am desperate for North America not to end up like Italy, who is out of medical equipment and having to triage who gets help and who doesn’t basically. My heart breaks for them! I hope the masks come in time too, and please be safe if you’re out in public. As hard as it is, we should all be practicing social distancing. Have any cases since been diagnosed in Maine? By the way, I love your state! I spent summers in New Hampshire and often visited Maine… beautiful area.

      Hang in there and write anytime!
      Charlene.

    • #23428

      Thanks for sharing your thoughts with us @miltont ! Yes, being proactive in slowing this virus to save our healthcare system has to be the focus now. Unfortunately, the virus is already out there and many of us (hopefully not those of us with IPF!) will be exposed. My heart aches for the decisions having to be made by healthcare workers in Italy now because not enough supplies are available to help everyone. Slowing down the spread has to be the focus, which it sounds like you’re working hard at doing without too much disruption in your life. Kudos to you! Glad the bushfires are slowing too…. your beautiful country has suffered so much. I hope to return to Australia in 2020, time will tell. What a year it has been so far!
      Charlene.

    • #23434
      Jerry Genesio
      Participant

      In the past two days, three of the minuscule number who have been tested in Maine are positive. One is a staffer in a downtown Portland health clinic which has been closed. Did anyone see Rachel Maddow interview Dr. David Ho on MSNBC last night? He has received a $2.1 million grant to find a way to stop the virus from replicating in the human body. He is the scientist who figured out how to achieve that same process with HIV two decades ago so using that research puts him years ahead in the process. There is hope!

    • #23438

      I didn’t see that Jerry but I sure hope he’s up for the challenge and can do so successfully! There has been a research team in Toronto that has “isolated the COVID-19 virus” but I don’t know what that means in terms of addressing/stopping it. I haven’t read the full article yet. Fingers crossed this starts to slow soon. Glad the clinic has shut down, stay safe in Maine 🙂
      Char.

    • #23478
      Jofac O’Handlin
      Participant

      Hi All,

      My wife has just gone through thyroid removal and radio iodine treatment received mid February. As a result of this we agreed , an excuse,   to self isolation, no social gatherings …. if possible, which was ideal for me, now nearing 7 years since preliminary diagnosis of IPF.

      I anticipate that I am in the final year or 18 months with my IPF. But we are lucky in that we live in a small community about 10 thousand, in a sea side town. This allows us to take evening walks in the sometimes too fresh air with the call of seagulls, and without meeting or passing any or many other pedestrians. Occasional friend’s stop us  to offer thier support, but we try to exceed the recommended 2 metre rule, quite a distance! At 78, and 74 this exercise is good for our general wellbeing, even if i find my slower than I’d like walk up the headland, rather harder than I would wish.

      I sincerely believe that I would not survive Covid-19. I am not in panick mode just realistice. Take reasonable precautions, and I hope to hang on until a vaccine or  treatment might become widely available. It all depends on your definition of reasonable. We are quite social, but can tollerate our own company and are relatively independant.

      It is good to hear the world medical research groups co-operating to fast track a treatment.

      Good wishes to all.

      Regards, Joe

       

    • #23480
      Susan Howitt
      Participant

      Hi Joe

       

      Keep walking, you can do up the headlands?  even at a crawl, that is brilliant.I walk too but on the flat. Good for us. Years ago I used to live by the sea,  7 sisters area.  Please don’t be pessimistic, I will be 74 this year, was given 3 years done 2 1/2 of those three years, there is no way in this world that I will let that dire prediction come true.  On oxygen,  I have CPFE,  SSc, Brochiectasis,  all progressive and just for good measure GERD  I know I won’t survive the Coronavirus but keeping fit as I can I might avoid getting it.

    • #23486
      Rand O’Brien
      Participant

      Hi Folks,

      I think the hoarding is out of fear/anxiety.  People are trying to feel “safe” when they have little control.  We turn to food and necessities.  The food supply is not affected and the chains are long to supply major markets. I’m in a retirement community so we are looking out for each other and limiting trips off campus.  A little stocking-up means fewer trips. This is gonna be a long haul; the feds finally see that.  So we just need to keep on keepin’ on.

      It helps to understand what we are up against, the virus itself, and then take care.  In the science section of the NY Times today is an excellent couple of articles and visuals of what happens with this particular virus.  It does what most viruses do, use cells to their advantage and “desire.”  What helped me was seeing that each virus “cell” (viruses are not true cells) has an  “oily” covering protecting it.  Washing your hands with soap breaks this oily covering and literally destroys the virus on your hands.  It’s not because of hands being dirty, but actually breaking the virus apart.  That was information that was nice to know.

      Rand O’Brien

    • #23504
      Jofac O’Handlin
      Participant

      Hi Susan,

      Thank you for your encouragement. I respond by saying, ‘you too’, I admire your spirit, and keep getting the miles in. I read the Swiss paper on the antibiotic azithromycin which ‘may’ have anti fibrotic effect for IPF but also seemed to have some benefit for GERD. I doubt a GP would prescribe an antibiotic for long term use as a prophylactic. Also, another pill with side effects!

      I was a runner all my life, with a few discipline lapses, but had a good training partner for over 30 years. I had to retire from training last June as I was holding my friend back, and it had become purgatory for me. Considering my age my body is very good, just my ‘blank-blank’ lungs.

      Hi Rand O’Brien, I also do not condone hoarding either, but understand the psychology involved. Over here in the UK there has been a run on toilet rolls! I wondered, in the old days, wasn’t the Sears Roebuck catalogue the substitute in the USA!!? However, your comments on the science are much appreciated. My hands have never been so clean!

      Hey Paul, we with IPF and COPD sufferers are at high risk and may not react quite logically. However, if you have a comment, please support the same with some information or facts.

      Best wishes to all. May we survive and get out the other side of this crisis OK. Probably poorer with the market crash but Hey Ho!

      Take care all, Joe

    • #23505
      Doug Jones
      Participant

      1)  Charlene–gentle clarification re: COVID-19 terminology.  COVID-19 is the name given to the disease which is caused by a particular NEW corona virus– “It is likely impossible that you’ve not heard about COVID-19“>, a novel coronavirus”

      2) I agree with Paul that there is often too much misinformed commentary/politics on these pages.  Not sure how to deal with that because these are essentially “speak-your-thoughts” blogs.  Using reliable resources such as those from the US government (e.g. CDC, NIH, NLM) or authoritative medical research institutions (e.g. Harvard, Mayo, Cleveland Clinic, UCSF)  Look for citations to the published medical journals and be wary of any small study or undocumented cohort–these are complex issues.  It is useful to keep in mind the analogy of the 6 blind men and the elephant:  Depending on whether you are touching the tail, the trunk, the ear, the leg… you may be “right” but you don’t see the whole elephant.

      3) The most recent guidelines for older adults or those with underlying health conditions (e.g. IPF)  recommend to STAY HOME AND AWAY FROM OTHER PEOPLE–not just avoid crowds, etc.

      https://www.whitehouse.gov/wp-content/uploads/2020/03/03.16.20_coronavirus-guidance_8.5x11_315PM.pdf

      • This reply was modified 2 months, 2 weeks ago by Mark Koziol.
      • This reply was modified 2 months, 2 weeks ago by Charlene Marshall. Reason: formatting
    • #23507
      Susan Howitt
      Participant

      @jofac-ohandlin

      Hi Joe

      Yur last response doesn’t sound quite so disheartened. It must be very annoying to have your lungs fail having been a runner, I have never before been an exercise lover, used to walk a fair bit over the 7 sisters when I lived there but that was decades ago, now I realise the importance of staying as fit as our konked out lungs will allow. Wish I could lose weight, not excessively over weight just can’t shift the extra kilos due to the cortisoids.

      Hoarding has not been a problem in this part of the woods, probably because fast food and pre-prepared just isn’t the norm here, the only things really missing in the super market is fresh veg, chilled foods like chicken and fresh dairy products like yoghourts of all things.

       

      Yes, Paul  I missed the *obviously misinformed politics* on this forum, what are they? not too obvious to me.

      • This reply was modified 2 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #23510

      Hey Doug,

      Thanks so much for chiming in here, yes a very popular topic and important to get all of our information for credible sources. You’ll see this is what both Mark and I (as co-moderators of the forum) have been telling people repeatedly. Thanks for sharing the sites you use – they are among the list of ones we recommend as well 🙂

       

      Regarding information shared on her – people are sharing their experiences/fears/thoughts about the virus. This is all personal information, there isn’t misinformed news or politics shared on here and Mark and I monitor for that. Everyone is most welcome to share their experiences and how they’re feeling about the virus. It can be a tough time, though I agree with you and the need to keep politics out of it. Thanks for sharing your thoughts.

      Charlene.

       

    • #23513

      Hi Rand,

      Thanks so much for your contributions to this topic thread – I appreciate the time you took to share the information with us. I completely agree with you – I think the hoarding is indeed out of fear/anxiety and even likely some control. A little stocking up to avoid the grocery stores every 2-3 days is ideal, but people are taking far too much for their need and leaving so many without any. It’s so tough. I’m glad you’re in a community taking care of one another – that is something I wish we’d see more of with this virus, is people helping people. Maybe after a couple of weeks….

      Interesting recap of the articles you read too Rand, thanks! It’s helpful to adjust our actions accordingly when we understand the virus a bit better. Thanks for sharing 🙂
      Charlene.

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