Log In or Register to Join The Conversation!
Viewing 23 reply threads
  • Author
    Posts
    • #23713

      A diagnosis of idiopathic pulmonary fibrosis (IPF) and/or learning to live with this cruel lung disease is difficult for a patient’s mental health at the best of times. We all know with the chaos the novel coronavirus COVID-19, and the havoc it is causing around the world; these are far from the best of times. As a result, both @mark-koziol and I as your forum moderators, have been thinking of our members in this great online community.

       

      I recently saw this shared elsewhere on social media and thought it was very powerful… and kind of fun! Your mental health matters, and you matter to us.  While Mark and I are managing our own socially isolated days amidst this health crisis, please review the “mental health check-in” below and respond appropriately (copy and paste just the heart emoji reflecting the colour of how you’re feeling). We’ll do our best to connect with members who are in need, as often as we can! You can post a reply below (public) or feel free to message either of us. We’re thinking of you all during this tough time.

       

      MENTAL HEALTH CHECK-IN

      💚 I’m doing great

      💙 I’m okay

      💛 I’m okay-ish

      💜 Things are tough

      🧡 I’m struggling

      ❤️ I’m having a hard time and wouldn’t mind if someone reached out to me

      🖤 I’m in a bad place right now

       

      What are you doing to take care of your mental heath right now?

    • #23748
      Lorraine
      Participant

      Some days 💚  I’m doing great — other days 💙 I’m okay.

      I am trying to stay strong, but know as things worsen, that may be challenging.

      I live on Staten Island, New York — a 25 minute ferry boat ride to Manhattan.

      Currently there are 59,648 COVID cases in NYC and 965 deaths.

      On Staten Island, there are 1,866 cases and 52 deaths.

      The number of cases/deaths continue to rise rapidly.

      Buildings such as the Javits Center, are being converted into field hospitals. Field hospitals in the form of tents, are being erected in Central Park.

      There is a shortage on Personal protective equipment for medical personal and civilians.

      There is also a shortage of medical staff, ventilators etc.

      Food is getting scarce and the supply chain is overwhelmed, altho I am still receiving deliveries as of this writing.

      What are you doing to take care of your mental heath right now?

      Follow a schedule, Pace myself, Go outside for Social Distancing walks, Visit and help my mom, Take time to connect with family/friends, Listen to experts.

      Participate in TelMed calls or VideoMed calls as needed,

      Take FREE virtual YMCA classes.

      Drink wine. (Stress eating, grrr, weight gain).

      Take long showers.

      Act silly and laugh.

      Social calls by telephone, FaceTime etc.

      Send silly text and email messages.

      Participate in video conferencing calls/events/parties … via ZOOM.

      BE SAFE AND WELL,

      LORRAINE

       

       

       

       

       

      • This reply was modified 2 months ago by Mark Koziol.
      • This reply was modified 2 months ago by Charlene Marshall. Reason: formatting to remove code
    • #23768
      Paul
      Participant

      I’m feeling as if we are all going to be fatalities to this virus. The experts all seem to agree that we will ask get it eventually. Most of us can not survive any flu. A lot of us can’t be intubated because we wind never get off of it. Pretty gloomy future for thousands of us.

    • #23770
      Ross Harris
      Participant

      💙 I’m okay! It’s not been completely a smooth ride, but I’m Okay. I would have preferred not to have the additional stress of COVID-19 but now that it’s here, I’m trying to deal with it in a reasonable and intelligent fashion. My mother died from IPF in June of 2019 so I have her illness and death as a ‘touchstone’ of what can be ahead with IPF and I’ve read enough about COVID-19 to see the similarities and the differences in both diseases. My wife and I completed our will several years ago and prepaid our cremation costs so we’ve eliminated that part of our worry. Everything else is in God’s hands, good or bad.

      • This reply was modified 2 months ago by Charlene Marshall. Reason: formatting to remove code
    • #23772
      Mark Koziol
      Keymaster

      Hello Paul, I think our population will be OK during this crisis. Remember we have the experience to get through something like this. Many of us have practiced self-isolation in the past and know how to direct others in the significance of proper hygiene and to stay away if they are sick. I am actually happy my wife doesn’t have to go into work during this time. She is a school teacher. Since my single lung transplant in December 2015, I have been lucky to get an upper  respiratory virus every March-April. My transplant doctor suspects it was my wife carrying this home to me. I have had the flu, and several other oddly named viruses since then. In fact I had the regular coranovirus last spring. I was not given anything to combat this. I felt better after 4 weeks. Best wishes Paul. Stay safe and best wishes, Mark.

    • #23800

      Hi @lorraine ,

       

      Thank you so much for chiming in on this topic and letting us know how you’re doing. I am thinking of you all in the NY-area so much!!!! I’m glad to see some green and blue hearts on your “check-in” and hear how you’re keeping yourself busy and strong. As thing worsen, feel free to reach out – we sure are facing difficult times that are changing rapidly. Thinking of you all so much, and glad you are staying safe and out of harm’s way, even as chaos surrounds you. I can’t imagine seeing beautiful Central Park (one of my fav places in the world!) turned into tent-based hospitals. Sending you, and the beloved city of Manhattan, many prayers! Thank you so much for sharing some ways you’re helping to keep yourself busy and take care of your mental health. Laughing is so important, glad you’re finding ways to do that. Take care Lorraine, thank you for writing!
      Charlene.

    • #23804

      Hi Ross,

      Thank you so much for writing to us and chiming in on this topic. I am glad to see a blue heart – there is so much to feel stressed and concerned about. Trying to deal with it as best we can is important, and as hard as it likely was, kudos to you and your wife for proactively doing what you can to eliminate some worry. Keep your faith, thank you for writing to us. Thinking about all of our fellow IPF patients during this stressful time.

      Charlene.

    • #23822

      LOVE all these suggestions @lorraine ! I am sure many others will benefit as well, and connecting to your silly 8 year old self – how perfect. We all need to remember laughter, goofiness and youthfulness throughout this crazy time. Zoom is such a God send isn’t it? I love being able to use it as well. Maybe I can create an opportunity for a PF forums zoom call? Hmm, something for me to consider that might be fun for all of us!

      Glad to hear you’re still exercising, this is important as well and your creative ways of doing this (ie. online YMCA classes) is so great to hear. I am trying to walk every day as well and get some fresh air. Good reminder about limiting COVID-19 news/TV, this is really important for our mental health.

       

      Thanks for checking in and continuing to wish you well. Thinking of NYC often and keeping your beautiful state in my prayers.
      Charlene.

    • #23838
      Lorraine
      Participant

      @charlene-marshall

      Greetings Charlene:

      I welcome the idea of participating in a Zoom call.

      From my experience, Zoom calls are pleasant and an uplifting experience.

      While walking, I blast my Spotify playlist. I do not want to use my earbud, as I want to know if others are around, which is rare. I may try Sirus Radio, to mix things up and since I HEARD it is now free for two-months.

      Stay safe and well.

      Lorraine

       

    • #23870
      Peggy Ross
      Participant

      An autopsy (age 78) was required for diagnosis, as the scans looked like IPF to the radiologist, but my pulmonologist was leaning toward Hypersansitivity Pneumonitis, since I had been coughing productively and was still around more than 4 yrs.  after diagnosis.I think I had C-19 in Dec, as the “flu” resembled the one I had in 2008 or 09, just before scool eended.  I was a teacher, woke with high fever, aches, no other symptoms.  After 3 wks of dry cough, I had 4 AFib attacks in 3 days.  Unable to breathe, I was hospitalized, put on oxygen, and eventually diagnosed (based on scan) with IPF.  Same M.O. last December, tbough less severe, stayed home in bed,  had apparently been infected by close contact with friend who came to help my daughter, who has cared for me since stroke in Jan, 2018.  I was stable until 2017, then began to need oxygen to walk my small dogs.  Bending over to put them in harnesses was just too much.  So, I went from stability to oxygen, with a short trip through rehab along the way.  Now vegan, except for occasional taste of fish (I’m sorry, Nemo), I think I’m probably not likely to get Covid -19, and credit the “stay home” policies .  Wishing you all good health, and urging a biopsy, if, like me, you have any doubts about your diagnosis.     Peggy in Soquel, Sta. Cruz Co, CA central coast.

       

    • #23892
      Sara Tanner
      Participant

      We are very worried. So what happens if my husband or I contract COVID19 ? He is diagnosed with IPF & I have no health problems. If  he would get it & he’s not hospitalized & quarantined at home, how do we keep the other from catching  it?? If I would contract it & be quarantined at home, how would Zi keep him from catching it?  Woyld I need to find somewhere else to go? Who will care for him? Our children have young ones & can’t be around it etc.

    • #23899
      gil
      Participant

      Charlene,  💙

       

      I’m okay. My two daughters have me  isolated. I am getting cabin fever but I am staying home, I have unfinished business with a daughter and I am going to do all I can to be around for a while.   I do grocery shopping on line , it is so convenient I may keep doing it after this virus threat is over.  the other positive thing is I find I am communicating with more people and more often.

       

       

    • #23904

      @gilg-ca

      Hi Gil,

      So nice to hear from you, thanks for writing to us! I am glad to see the blue heart, indicating that you’re doing okay amid this pandemic. Although it is boring, and cabin fever certainly does set in, staying isolated is really important. I am trying to find tasks I can do around the house to fill my time, hope you are as well! Glad to hear the communication has increased, using digital strategies, in a way mine has as well, that is one good positive thing to think about. Also glad to hear grocery shopping has become convenient. Hope there isn’t too long of a delay/lag for delivery! Take good care and thanks for connecting 🙂
      Charlene.

    • #23905

      @wifeofipfpatient

      Hi Sara,

      Thanks for writing and sharing your thoughts and concerns. I do agree, it is a very worrisome time for all of us but do remember physiological impact of stress and worry on our immune systems. It’s hard not to think about what would happen if we contracted this disease, I am an IPF patient and have concerns about this but cannot let it consume my thoughts or I won’t be able to make it through each day. The power unfortunately doesn’t lie in whether or not we catch it, but where is does lie is in our ability to do everything we can to prevent it. There are lots of a very informational YouTube videos (use credible sites only) on how we can help stop the spread of the virus coming into the home on different surfaces, ie. groceries, mail, etc. While it can be overwhelming to follow these steps (wiping things down gets tiring!), it might be something you can do to feel a bit more in control. Other than staying inside and practicing physical distancing, there is little else we can do. Try to make a tentative plan for “what if”, that is important to be prepared but don’t fixate on it if you can help it. I know it is super hard though – thinking of you and your husband!
      Charlene.

    • #23910

      Hi Peggy,

      Thanks so much for writing to us, and sharing a bit about your story. We have a few members with HP on this site, who are kind enough to share their story. Many others are happy to share their experience with IPF as well, really sorry to hear of your struggles with various viruses and flus – they really can wreck havoc on our bodies as patients with compromised lungs. Wishing you the very best during this scary time – stay safe!
      Charlene.

    • #23911
      Paul
      Participant

      So what are your tentative plans? Pulmonologist say the only plan is to call hpspice

    • #23913

      Hi Paul,

      The tentative plans I’d consider and was encouraging Sara to consider was more about who would care for her husband if she got sick (as his caregiver) and/or how to best help him if he got sick without exposing herself, ie ensuring proper PPE at home or having him admitted to hospital. I don’t think getting COVID-19 as an IPF patient is a death sentence by any means, and I don’t think we should approach it as so (though I am not a physician). It could be bad yes, but I know of a few CF patients who have survived it. Having a plan in place for “what if” is a good idea, gives us a better sense of control and that may include calling hospice for direction but that wouldn’t be part of my tentative plan. Stay safe!
      Charlene.

    • #23914

      Hope you’re staying safe as well Lorraine! I just spent some time yesterday updating my iTunes playlist as well, funny you should mention Spotify and Sirus Radio. Having music has been a God send since this social isolation went into effect. I’ll check out the options for Zoom and see what I can come up with. Stay tuned!

      Be well,
      Charlene.

    • #23959
      Wendy Dirks
      Participant

      💚💚💚

      I’m doing great. I’m actually astonished at how calm and safe I feel. I never thought I would feel blessed to have PF but I do.

      Part of the reason for this is the UK’s response. It took time to implement, but everyone with interstitial lung disease (among other diseases) are “sheltered.” We are to stay at home in total lockdown for 12 weeks. We are prioritised for grocery deliveries and our local council will arrange for our medications to be delivered or we can use a delivery service. I went into lockdown a week early because I knew it was coming. My husband and cat are in lockdown too so we are not lonely. Because we are retired, our income is not affected.

      So why is my disease a blessing? Over the last two years my ability to do the active things I loved has decreased until I was pretty much homebound anyway except for pulmonary rehab and medical appointments. This has been really difficult for me but I had come to terms with it before the pandemic. Both intellectually and emotionally, almost nothing has changed. I accepted my mortality long ago and now I’m determined not to die from covid-19 and I don’t think I will. I’m prepared to stay home for the rest of my life if need be, pottering in my garden, writing my blog, playing with my dolls and my cat. I’m definitely staying home until there’s a vaccine. So having PF has blessed me with the ability to cope.

    • #23982
      gil
      Participant

      Charlene,

      “I don’t think getting COVID-19 as an IPF patient is a death sentence by any means, and I don’t think we should approach it as so (though I am not a physician). It could be bad yes, but I know of a few CF patients who have survived it. Having a plan in place for “what if” is a good idea…”

      I had thought getting IPF  was a death sentence, I am glad it is not.  Any ideas on a good plan in case the Virus gets us?


      @wendy-dirks

      I like your attitude, “I accepted my mortality long ago and now I’m determined not to die from covid-19 and I don’t think I will. I’m prepared to stay home for the rest of my life if need be, pottering in my garden, writing my blog, playing with my dolls and my cat. I’m definitely staying home until there’s a vaccine. ..”

       

      • This reply was modified 1 month, 2 weeks ago by Mark Koziol.
      • This reply was modified 1 month, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #23987
      Katie Bagshawe
      Participant

      Hello everybody! Long time no see. Apologies it’s been a while since I logged in. Life has been very busy balancing work/study. Due to the current situation my student life has changed dramatically as I can’t go on placement in Hospitals, however I am working shifts in the Radiology department as an Assistant to help where I can. Very surreal and scary really.

      I’m so pleased you’ve taken the time to slow down and allow everyone to check in with their mental health. It’s really important and I hope you are all staying safe and well at home. I can’t even begin to imagine the anxiety that some of you must be facing right now.

      I love your ideas of the hearts too! For me, I’m okay. Some days are harder than others, but I try to slow down and remember how lucky and grateful I should be. I’m safe at home with my loved ones and we’ve made the most of the garden and the lovely weather. I just try to focus on the fact that a lot of this is out of my hands and I have to take each day as it comes. It’s hard to be so out of control but at a certain point you have to realise your hands are tied and you just have to go with the flow. I do my best to keep distracted and to stay in a routine as this always helps reduce the risk of my anxiety increasing.

      Sending my love to all of you right now ❤️

    • #24016

      Hi @wendy-dirks ,

       

      I am so happy to see those green hearts and hear that you’re doing well! I know things can get overwhelming quickly, so I am really glad things are going well for you and that you’re content with the UK’s response to those with ILDs. I’ve not heard of anywhere else adopting this (some local stores are allowing a “senior’s shopping hour” before the rest of the store opens, but that doesn’t work for others who are compromised and under 65) so that is excellent to hear! That is especially great to hear your medications can be delivered 🙂

      Thank you for reframing such an important message when it comes to our disease: “having PF has helped me to cope”, I am going to remember that more often and share it with others. It certainly applies to many of us!

      Continue taking care,
      Charlene.

    • #24021

      Hi Gil,

      Good question about COVID-19 and IPF/PF. I know there are a few different webinars coming up about information on this, through the Pulmonary Fibrosis Foundation and also Noah Greenspan is sharing a lot of informative live Q&As about this on his social media platforms. I suppose I can’t say for certain that it is not a death sentence, but I know of people with IPF/PF who have survived it. Of course the odds are not in our favour, so I would encourage everyone to do everything they can to comply with physical distancing orders and remain isolated. However, I don’t think we can say it is a death sentence either: we never really know what will conclude our time. Just my thoughts, but I am not a medical professional.

      I’d ask your physician or medical team about a plan you could implement if you got it, likely we’d be hospitalized but if we can manage at home, we may also be instructed to self-isolate/monitor our symptoms at home. I’m not sure anyone can offer other things at the moment, unless ventilation is required. Not sure if this helps any? I’d certainly defer to your team for a plan 🙂

      Take care,
      Charlene.

    • #24025

      Hi Katie,

      So nice to hear from you, thanks for writing and sharing a bit of an update on how things are going for you. It’s very admirable you’re assisting in the radiology department as needed, but do stay safe. I’m sure your schooling looks very different right now, as so much of the world does. I agree with you: very surreal and scary!

      Glad to hear you’re finding ways to cope, and taking it one day at a time is just so important for us right now. Hang in there and thanks for connecting!
      Charlene.

Viewing 23 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2020 All rights reserved.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account