• wendy-dirks

    Member
    March 10, 2020 at 8:00 am

    I am engaging in social distancing by not going out – but I hardly go out anymore anyway. My husband is 74 and in reasonably good health and acts as my carer. He plays bridge every week and I am really nervous about it. They are supposed to get hand sanitiser for every table by the end of the week. It’s his only respite as a carer and I don’t want to tell him not to go but quite frankly, I feel as if this virus will be my death sentence if I get it and I wish he would stay home. I’ve washed my hands until they are raw. I hadn’t thought of giving up pulmonary rehab because there is always hand sanitiser available but I’m not sure anymore. I just read an article in the Atlantic saying that the time for us to engage in social distancing is now before we see the predicted spike in cases.

  • wendy-dirks

    Member
    March 10, 2020 at 8:04 am

    And as to not touching my face – ack, forget about it! My nasal cannula always needs adjusting and because of my extreme allergies to the entire world (I have hypersensitivity pneumonitis), my eyes are always weepy and crusty – I have some sort of chronic allergic conjunctivitis and although I use prescription eyedrops, they don’t always prevent extreme itching and burning in my eyes. I just need to hide until there is a vaccine.

  • mike-mses

    Member
    March 10, 2020 at 9:08 am

    I went to Washington DC last Friday to see the kids and then to be with other American Legion members downtown to visit our representatives and talk about Veteran issues.  I was already uneasy about the crowds and the virus, and washing my hands every few minutes or so.  On Monday morning the President was talking about suspending all unnecessary face-to-face meetings, Federal agencies were preparing for everyone teleworking, there was a church and school closing, and the TV was showing people in masks, etc.  We got spooked by all of this, especially since I am 70 and only have 50% lung capacity left (IPF).  We certainly did not want to ride on the Metro.  The hotel we were staying at had all the employees wearing protective gloves.  We decided to come home early and stop being around people.  Maybe we were being a little chicken, but I’d rather be safe than sorry and be at home.

    I did have my evaluation last Monday through Thursday.  I believe that I look to be a good candidate for transplant, but I hope to find out for sure by tomorrow.

    Mike

     

  • wendy-dirks

    Member
    March 10, 2020 at 9:16 am

    Hi, Mike – I do hope that you are a candidate for a transplant. That would be a very positive step.  It sounds as if you made a sensible choice about coming home early. Best wishes, Wendy

     

  • mark-koziol

    Member
    March 10, 2020 at 12:32 pm

    Hello Mike, I hope you hear the news you have been waiting for. I wish you luck and hope you will be listed in the near future. Thank you for your service Mike. Take care, Mark.

  • lorraine

    Member
    March 10, 2020 at 4:08 pm

    I will avoid large crowds and unessential travel.

    Best wishes all!

     

  • john-styles

    Member
    March 11, 2020 at 8:37 am

    May be time to pack your bags and head south.  Usually these virus like cold weather and not hot and humid weather.  No one is saying anything yet because this is a new virus and no history but India is hot and humid and a population of 1.4 billion people and only 70 cases.  Here is hoping for warm weather and good news. As for me I am not going north, looks like a mess in Seattle and now New York.

  • jerry-genesio

    Member
    March 11, 2020 at 11:32 am

    My wife and I are now wearing nitril or latex gloves when we go out. We carry our own ballpoint pen but most credit card machines require use of a stylus that has been touched by everyone in the store using a credit card. Public pens and styli are filthy with germs as are the buttons we use to enter a PIN number. And don’t hesitate to say something when someone coughs or sneezes without protecting others from their germs, especially in a public place. I was at Kohl’s Department Store in Westbrook, Maine, yesterday when a woman coughed directly and openly into my pathway and I very courteously asked her to please cough into her elbow to protect others who might be very vulnerable. She didn’t respond in any way but the look on her face told me she was insulted. I know those who do this aren’t doing it intentionally, but there’s a term for that as well and it’s called manslaughter.

  • Charlene Marshall

    Member
    March 11, 2020 at 2:52 pm

    Thanks for sharing this information Lorraine. It is good to be as proactive with information sharing as possible, and I appreciate you taking the time to share this with all of us, along with what you’re doing to stay healthy. Sounds like you’re doing everything right and being proactive, which is the best we can do. I agree about the importance of “keep calm and carry on as well” 🙂

  • Charlene Marshall

    Member
    March 11, 2020 at 2:55 pm

    Sign me to up to go where it is warm @caneelbay1 ! 🙂

  • miltont

    Member
    March 13, 2020 at 6:33 pm

    Thanks to Lorraine for forwarding the hints to help prevent infection. I was going to do the same but my access had crashed. The only thing else that I re all the original author saying wad that you touch your mouth or nose on average more than 90 times a day. As he wrote and as Charlene noticed, wearing blue latex gloves reminds you not to touch your face.

  • lorraine

    Member
    March 13, 2020 at 6:40 pm

    Well said Miltont! Keep safe.

  • john-styles

    Member
    March 14, 2020 at 8:38 am

     

    for all the sideline folks and non believers of laser look what Andy Hall posted on the faebook web site for laser for lungs    Pubmed @ PMC4171215   unbelievable, I googled this and I am shocked that is it is in NIH maybe 6 years ago but great news, since reading Andy’s post I have gone to twice a week with the laser treatments. God bless Andy.

  • Charlene Marshall

    Member
    March 14, 2020 at 11:56 am

    @miltont

     

    Thanks for writing to us, yes this spread of COVID-19 is concerning and it is important we try our best not to touch our faces. Wearing gloves helps with this, and even though they say a mask isn’t helpful to keep you from contracting this virus, I am wearing mine because it also reminds me not to touch my nose/mouth. I also imagine it can’t hurt to be wearing it, and if nothing else, it fends people off/away from me out of fear, which I am okay with right now. Hang in there!
    Charlene.

  • Charlene Marshall

    Member
    March 14, 2020 at 12:04 pm

    I’ll check it out @caneelbay1 ! Thanks for sharing. It would be so good to have some formal research and reliability show the effectiveness of laser. I haven’t tried it, but I know others like yourself, Marsha and Steve really have sworn that it is helpful. Fingers crossed some literature emerges showing how helpful this can be. We, as an IPF community, need some hope for this soon!
    Charlene.

  • josh-harris

    Member
    April 16, 2020 at 6:17 am

    Yes, some people told me that ordinary masks are useless. Maybe they did, but all I can do now is to wear a mask, wash hands, and make sure that the hands are clean when touching the face, and measure the body temperature. I found that the contactless thermometer is definitely one of the greatest inventions in this year’s application. It is more suitable for use in this extraordinary period than other thermometers. On the one hand, there is no risk of cross-infection, and it can quickly measure body temperature. A thermometer can support multiple people. So I got one, and selected a reliable thing from a number of suspected fakes: https://www.amazon.com/Infrared-Thermometer-Forehead-Contact-Accurate/dp/B086JP7FV9/

    It also has a 50% discount: TMFP0250

  • jerry-genesio

    Member
    April 16, 2020 at 10:07 am

    IPF patients prescribed Symbicort must be especially careful and particularly aware of social distancing if they absolutely must leave the safety of their homes. I read the Symbicort side effects online very carefully and learned the following are listed among “common” side effects:

    Lower respiratory tract infections, including pneumonia, have been reported following the administration of inhaled cortecosteroids;

    Due to possible immunosuppression, potential worsening of infections could occur. A more serious or even fatal course of chicenpoxor measles can occur in susceptible patients. When this list is updated, it is likely to include COVID-19 along with “chickenpox or measles”.

  • Charlene Marshall

    Member
    April 16, 2020 at 4:48 pm

    Hi Josh,

    Thanks for sharing this link with us! I also have a contactless thermometer that I use now, as I check my temperature regularly…. it isn’t uncommon for me to run a low grade fever frequently, which is scary during these times. Checking my temperature is important and I’d rather others do this (if they need to for me) contactless. Good idea to share the link here. Thanks!
    Charlene.

  • Charlene Marshall

    Member
    April 18, 2020 at 1:42 pm

    Hi Jerry,

    Thanks so much for writing to us and sharing this important information! I know many people (IPF and those without a diagnosed ILD even) who use Symbicort so I will be sharing this feedback with them. I used to take this steroid but as a turbuhaler, the inhalation required to get the medication into my lungs became too tough for me. You’re right, once the packaging is updated to reflect side effects of the medication, I bet it will now include COVID-19 as well.

    Thanks again for writing, I’m sure many others will benefit from this post.
    Stay well,
    Charlene.

  • steve-dragoo

    Member
    April 21, 2020 at 6:46 pm

    Hey John,

    Remember many are asymptomatic but contagious.  So there are a few early symptoms that may help us move to get help faster. Loss of smell and/or taste, lesions on the feet (seems to affect younger ones), a sudden case of hives, rash (large patches), measles-like rash (little red dots), discolouration of the skin (livedo), (other problematic skin diseases excluded you may already have could affect these).

    Get tested get help take Serrapeptase (CAUTION – by itself empty stomach no other pills/food for at least 3 hours and you need a high dose), quercetin and zinc, consider Gilead’s experimental treatment – Remdesivir. Consider hydroxychloroquine and azithromycin – there are side effects.

    This virus can cause damage to other organs/heart, it can act a little similar to HIV-aids in that it will probably affect the immune system for the life of the victim, it can restart and you appear to only have short term immunity – if any.

    I am sharing this information to heighten our awareness not to cause fear.  My wife is so cautious over here in the Philippines when she goes out because this poor country has little it can do to battle the ccp-virus so quarantine and special passes for going out twice a week are needed. All public transportation has been stopped and no one over 60 is allowed out.  Harsh but needed except sadly 85% + rely on public transport and don’t have vehicles. We are used to hardship over here as there are many earthquakes and a recently active volcano – yikes! But no tsunamis. And ISIS destroyed a city not far from here a couple of years ago and are still in the jungle with much smaller numbers but still a threat.

    Peace, wellness and safety to all… – Steve

  • lorraine

    Member
    April 21, 2020 at 9:34 pm
  • Charlene Marshall

    Member
    April 22, 2020 at 11:31 am

    Thanks for sharing this link with us @lorraine ! So appreciate seeing that it is coming from National Jewish Hospital, a credible source, as so much mis-information is flying around about COVID-19. I will take a peak at these updates, and hope others will also. Thanks for sharing 🙂
    Charlene.

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