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Where to hide or what to do. I bought lots of hand sanitizer. Masks are out due to the need for portable oxygen, the oxygen draws air into the unit so why even worry about a mask? Seems we were reactive to the situation with the virus until this week and now the country will get proactive. I was real disappointed in the CDC, up until this week they wanted to wait until some one was from out of country or associated with a known person to test the person if they were sick. Now they will test people with fevers. I think it may be here due to the Hawaii report, a couple from Japan toured the big island and Maui and the day after they returned home they were sick, probably brought the virus with them to Hawaii and who knows how many people were exposed and Hawaii is a big vacation area for Californians and orientals. We are the high risk group, people with lung disease. Being the virus is in the family that causes the common cold it may be with us year round. Good luck to everyone. Reminds me of the song ” no where to go, no where to hide”
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Hi John,
Thank you for writing to us and opening this topic – while I’m trying not to spend too much time thinking/worrying about this virus, I know it is hard not too and many patients with IPF likely feel worried about corona. I am just doing everything I can to ensure I protect myself from it – washing my hands as often as possible, hand sanitizer, etc. Part of me thinks of it like anything else: I got a cold that led to pneumonia in November and almost destroyed my lungs. I suppose we can get anything and it can go bad really quickly. Doing everything I can to protect myself and knowing that I am is the way I am coping with this new virus. What are others thinking about it?
Also, please remember: the most important thing for everyone to remember is that if you get symptomatic, you go to the doctor right away to prevent the spread of it.
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…”if you get symptomatic, you go to the doctor right away to prevent the spread of it.”
The official response to this statement is that you DO NOT go to the doctor right away. You call your PCP, emergency room, or other medical facility and ASK what you should do. Going to the doctor immediately without their knowledge of the situation only spreads the disease (if you test positive for the coronavirus.)
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I have cut down on my outings and plan to self sequester once it appears in my area. I have already stocked up on dry goods (Kleenex, paper towels/wipes, etc.), meds, and food – especially shelf stable food. I have also keep some cash on hand in case it’s needed if and when the virus is detected in my community. I can still go out for fresh air, sun, and exercise but not with or around large groups of people. This is my way of coping with a unique challenge to my well being in a challenging time.
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Sadly, I think cutting down on outings is the only thing we can do. I haven’t worried too much about stocking up on things as I figure if I get it, I will almost immediately be hospitalised. The survival rate for people with chronic respiratory disease is 92% but I wonder if my lungs will be so damaged that even if I survived it, I’d be far more ill and far closer to the end of my journey than I would be without it. It hasn’t appeared here in my city yet, but the cases in the UK increase every day. We have been invited to a wedding at the end of May and sadly, I seriously doubt we will go.
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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.
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I’ve been monitoring very closely since I live 60 miles from Travis Airforce Base and UC Davis Medical Center, where they transferred the first community-transmitted patient, is only 20 miles away. But no cases reported here.
I’m more concerned about my son who lives near the outbreaks in Washington. I’m retired and can stay in if I need to, but most people can’t self-quaranteen.
There was another post about a person on oxygen being bullied while out shopping in the UK. I’d never thought that others would think of us as a threat.
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Hi @mary-millwood ,
Thanks for writing and yes, I agree with you: my statement should have said “contact” or “connect with” your PCP, ER, etc to advise on next steps, not necessarily going to the doctor in case it is positive. However, here in Canada they are encouraging people to seek a doctor for assessment (as opposed to calling) but I agree that calling in – if you can, we cannot call Emergency Rooms easily here, it is ideal to call to prevent any possible spread 🙂
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I am like you Joe! I’m still going out and enjoying my time in the sun, fresh air etc but I am very mindful of activities in close quarters with others…. especially when it isn’t necessary. When it is, I take all precautions I can. Sadly, it is very close to the city I am in and we’re keeping a close eye on its spread. Stay well!
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Hi Terry,
Thanks for writing about this important topic. Sorry to hear your son is near the outbreak in Washington! My friend is too, and it is quite scary isn’t it? Certainly not enough so where people are bullying others though. I read that too, and my heart broke. I think the media is contributing to our fear(s) about the virus, it is important to be as proactive and vigilant as possible but unfortunately that is about all we can do. Hope your son stays healthy!
Char. -
Some basics to help incude:
1. Try to stay a few feet from other people.
2. Would not buy prepared meals (away from home or delivery). Cook your own food.
3.Recognize this as not much different than risk of a respiratory based flu.
4. Ebike or drive. Steer clear of public transit including air travel.
5. Really steer clear of people in health care buildings. Wear a mask.
6. Wash hands. Sanitize.
7. Sanitize home.
8. Spouse or others in house must also be vigilant.
9. Play cards and games online, not face to face.
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This just really became real for me. The first California death was at a hospital in my city. I cancelled my mani/pedi tomorrow, but have my annual CT scan scheduled for Monday (at a different hospital). My RN daughter-in-law says to cancel it. Have a message into my pulmonary doctor for advice. It’s so hard to get appointments here. Finally, my son and family from Washington are coming for a vacation on Saturday. I feel surrounded. Sigh.
And the rumors are flying. A kid in middle school here told his class that his mother had it and had to stay home. Messages were sent to parents because this was in the same city where the deceased patient lived. Turns out the kid thought his false claim would make him popular.
I’m lucky I’m an introvert and don’t mind avoiding people.
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From what I understand, corona virus is a lung flu as opposed to upper respiratory flu, making it more dangerous to people with PF. In addition to above suggestions, I am asking visitors to wash their hands thoroughly as soon as they come into my house –we touch something everywhere we go and most of us are not thinking about sanitizing every time we push a door open or hold a railing on stairs. I am probably over-reacting but better that than ignoring possibilities.
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These are all excellent suggestions. We have our first case in the city where I live and I am worried. I expected it, to be honest. Great Britain is a relatively small island when it comes down to it. I have a CT scan scheduled at the same hospital where the patients are being treated in a special unit. I saw my consultant a week ago and raised the subject with her as part of the discussion of whether I should start MMF yet. I told her I didn’t want to start it until there was a vaccine for this disease – I need my immune system working at optimum! May we all stay well through this and hope this too shall pass…
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One more thing – I have washed my hands until they are raw! I have a thick cream that is prescribed for my legs – I have post-thrombotic syndrome on one leg and require thick paraffin based cream and a support stocking. But I have only recently started oxygen and was told to be very careful about flammable substances on my hands – like paraffin – and wash my hands thoroughly after I apply the cream – which sort of defeats the purpose of putting it on my hands to begin with! I’ve tried slathering myself up when I go to bed as I am on ambulatory oxygen only. It has helped a little bit but by the time I go to bed again tonight after a day of obsessive hand washing, my hands will once again be red, raw and burning. Ugh.
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Hi Terry,
Thanks for writing to us, although I am really sorry to hear this… I know the feeling of it being “a little too close for comfort”. Someone was just confirmed with it here too, and our city is pretty small in comparison to some of the other populated areas. Continue to do everything you can to prevent the spread and wash those hands often. I think cancelling appointments is a good idea if it’ll make you feel better. Let us know what your pulmonologist says about it, I think it is important we are getting information from credible sources as headlines are flying around everywhere. Have a good visit with your son but make sure he isn’t symptomatic when he visits, as I know poor Washington state is being hit hard right now.
Charlene.
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I think these actions are wise Sue! We often touch surfaces and don’t even think about it, so hand washing is such an essential part of our day now. I’ve also heard that the virus is particularly bad for those of us with lung diseases. Keep safe and do whatever you need/want to in order to help alleviate the fear or risks of picking up the illness. Thanks for writing, I know this is a topic on many of our minds.
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Hi Wendy,
Sorry to hear it has landed in the hospital near you too. It did where I am today too, and feels a bit too close for comfort but like you, I somewhat expected it. Unfortunately, I don’t know if we’re going to be able to contain it for awhile yet. We all need to be doing our best to prevent contracting it through the suggestions mentioned above and like you said, washing our hands frequently and for a long enough time. Unfortunately this does result in dry, red and cracked hands which can be very sore. I usually get this during the winter months here in Canada from frequent washing and it is unpleasant I agree.
What did your consultant say about not attending the CT scan until there is a vaccination for this disease? I am really curious about physician responses to COVID-19, especially for those of us with lung diseases. This is important information to have because so many rumors and headlines are circulating around. Stay safe all!
Charlene. -
Hi, Char – Sorry I wasn’t very clear. I’m going to go ahead and get my CT scan and attend all my hospital appointments as I normally would until the Chief Medical Officer tells us differently. I told my consultant that I didn’t want to start on MMF (CellCept) until there was a vaccine and she simply concurred. I think further discussion will come after she sees the results of the scan.
I have to say that I was disappointed in how little she had to say about the corona virus but that was in early days and I’m trusting that the team in the chest clinic are discussing things now that we have community transmission in the UK. The number of cases is jumping every day.
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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 🙂
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Hi @wendy-dirks ,
Oh sorry – that was totally my misunderstanding! When I went back to read your original post, you were clear but my interpretation of it wasn’t. I suppose that is what happens when it is text/writing we’re dealing with 🙂 Glad you’re able to continue with all of your scans and appointments, I know being in the hospital right now is very scary. Hope all clinics are taking precautions to avoid contracting the COVID-19 virus… stay well.
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Hi Jill,
Thanks for writing and bringing up this topic. I’d be curious to hear what other patients think about the use of gloves and COVID-19. I did wear gloves while flying home this past week, but I suppose being on a plane is a unique circumstance, and I wasn’t the only one. I am really bad at leaning my hands on my face to rest my head or itching my eyes when I’ve had my hands all over things, so the blue gloves really helped remind me to keep my hands away from my face, as you mentioned. I saw the benefit as two-fold, but I don’t know if others feel the same, especially when not confined to a space like a plane. Would love to hear others’ thoughts though…
May you continue to avoid any type of respiratory infections for a long time to come Jill, I agree! Thanks as always for writing 🙂
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I am afraid that Social Distancing will become my reality, especially if a 3′ distance, in public places is recommended … hopefully COVID-19 will burn out.
I just wrote a text to my pulmonologist, asking for guidance, given I am 61, have ILD and a heart PT.
In addition to the above postings, when in public places, I use a tissue or paper towel to open doors, depress elevator buttons etc. I have considered buying/wearing latex gloves.
I am trying to remember not to touch my face without a tissue, and doing pretty good in that regard. I am trying to remember not to lick my finger to turn a page. Other tings. As we know behavioral modifications take time.
I am drinking more hot tea and warm water, and getting as much sun as I can, since COVID-19 does not like heat!
I am sharing the below forward …
In closing, remember what our friends across the pond say, “Keep Calm and Carry on.”
Best wishes ALL!
Fwd:
“From another group that I am in. It is kind of a long read but well worth it.
My classmate’s nephew, graduated with a master’s degree, and works in Shenzhen Hospital. He is being transferred to study *Wuhan pneumonia virus.* He just called me and told me to tell my friends: If you have a runny nose and sputum when you have a cold, you cannot be a new type of coronavirus pneumonia, because *coronavirus pneumonia is a dry cough without runny nose*. This is the simplest way to identify. Please tell your friends that if you know more about medical knowledge, you will have more *awareness of identification and prevention.*
This time, the *Wuhan virus is not heat-resistant and will be killed at a temperature of 26-27 degrees*.
Therefore, *drink more hot water.* You can tell your friends and relatives to drink more hot water to prevent it. *Go under the Sun*. It has been cold recently, and drinking hot water is also very comfortable. It is not a cure and is good for the body. *Drinking warm water is effective for all viruses*. Try not to drink ice, remember!
Doctor’s advice about coronavirus:
1. It is *pretty large in size* (cell is about 400-500nm diameter), so *any normal mask (not just the N95 feature) should be able to filter it out*. However, when someone who’s infected sneezes in front of you, it will take a great 3 meters (about 10 feet) before it drops to the ground and is *no longer airborne*.
2. When the virus drops *on metal surface, it will live for at least 12 hours.*
So remember if you come in contact with any metal surface, *wash your hands with soap thoroughly.*
3. The virus can remain active *on fabric for 6-12 hours*.
Normal *laundry detergent should kill the virus*.
For winter clothing that does not require daily washing, you can *put it out under the sun to kill the virus.*
About the *symptoms of the pneumonia caused by Coronavirus*:
1. It will *first infect the throat, so the throat will have the dry sore throat feeling which will last for 3 to 4 days*
2. Then the virus will blend into the nasal fluid and drips into the trachea and *enter the lungs, causing pneumonia*. This process will *take 5 to 6 days*.
3. With pneumonia, comes *high fever and difficulty in breathing*. The *nasal congestion* is not like the normal kind. You will feel like you are drowning in water. It’s important to go *seek immediate medical attention* if you feel like this.
About *prevention*:
1. The most common way of getting infected is *by touching things in public*, so *you must wash your hands frequently*. The virus can only live on your hands for 5-10 mins, but a lot can happen in those 5-10 mins (you can rub your eyes or pick your nose unwittingly).
2. Aside from washing your hands frequently, *you can gargle with Betadine Sore Throat Gargle* to eliminate or minimize the germs *while they are still in your throat (before dripping down to your lungs).*
Folks, *take extra care and drink plenty of water.*”
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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.
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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.
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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.
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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
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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.
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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.
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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” 🙂
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Sign me to up to go where it is warm @caneelbay1 ! 🙂
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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.
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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.
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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. -
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. -
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
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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”.
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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. -
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. -
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
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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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