Log In or Register to Join The Conversation!
Viewing 13 reply threads
  • Author
    Posts
    • #24990

      Some of you may remember that I took a trip to California in February of this year (which feels like ages ago amid the COVID-19 pandemic) to spend time at Respivant; a Southern California-based biotech company on a quest to treat the chronic, dry PF cough. The passion behind this team to help patients living with pulmonary fibrosis is inspiring and their commitment to raising awareness, and trying to eliminate the IPF cough is deeply appreciated!

      Recently, Respivant’s CEO Bill Gerhart wrote an article on the stigmatization of the PF cough, and how it is amplified during the COVID-19 pandemic. You can read Bill’s full article HERE.

       

      His piece really resonates with me as a patient with this cruel lung disease, as I feel anxious every time I cough in public right now. COVID has caused a hypersensitivity to coughing in general, regardless of whether it is a cough associated with a chronic lung disease like PF, which isn’t contagious. You’re quickly glared at when you cough in public these days, which is deeply uncomfortable.  Unfortunately, as Bill writes, my experience is one that is shared by many living with IPF around the world during this global pandemic and I appreciate his efforts to illuminate our struggle.

      As a patient living with IPF/PF: what has your experience been dealing with a cough that has been hyper-sensitized by the general public due to COVID-19?

    • #24994
      Susan Howitt
      Participant

      Some one wrote on here some time ago at the beginning of the pandemic  that there is an answer for the nasty glares or even people rapidly moving out of your way that you get when coughing in public even when obviously wearing a portable oxygen machine.   they said you can politely say,  **My illness is 100% not contagious, 100% fatal,  thank you for your concern**  works wonders, they are then the ones embarrassed and maybe it will make them think twice before jumping to conclusions next time.

       

    • #25004

      Good reminder, Susan ( @reglois ), I’d forgotten about that conversation! A good tool to remember, I agree. It would be nice to educate (vs. embarrass) them, however, sometimes people don’t think before they speak which can be so frustrating to us. The mask controversy is getting difficult for me to hear these days!
      Hope you’re well,
      Charlene.

    • #25038
      Anne Philiben
      Participant

      Even before Covid19 I had a woman at the health clinic hand me a mask.  I thanked her and explained my cough was due to IPF and I wasn’t contagious.

      Interesting thing though I keep getting questionnaires  re: Covid19.  I have all the symptoms except the fever but I’ve had them for years.  I’m not filling any more out unless there is a place to explain first.

    • #25052

      Hi Anne,

      Thanks for writing and contributing to this topic. It’s interesting to hear others’ experience with this, as I’ve had my own experiences, but hearing from others helps. I hope the woman was receptive to hearing the explanation of your cough, and not judgemental. Who is giving you the questionnaires? Hope you continue to be well.

      Sincerely,

      Charlene.

    • #26080
      Marianne
      Participant

      Hi everyone –

      I am amazed that people don’t get more concerned when I cough.  I have bouts of coughing that comes and goes.  I usually quickly explain that I have a chronic lung disease which causes the cough.  I also tell them that it is not contagious and they don’t want this disease. The only thing I have noticed is that people move away quickly if you cough.  Very few people have asked me about my cough.

      I have only had one really rude and in my face stranger speak to me about my cough.  It happened way before Covid and before I had a definite diagnosis of IPF.  A lady at a local store heard me coughing while I was shopping.  She completed her shopping, checked out and waited for me to check out before approaching me.  She informed me that I was driving people out of the store and should not be out shopping with my cough.  I kindly informed her that I had a chronic lung disease that was not contagious.  She was still not happy.

      Other people have asked me I needed some water or a cough drop.  I usually carry water with me whenever I leave home.  Most people have been very understanding.  If cough gets too much I just leave the store and return home.

      Marianne

       

       

    • #26082
      Mark Koziol
      Participant

      Hello Marianne, you are a kind person and diplomatic as well. Since this is a family show, I can’t tell you how I’ve reacted in the past. Thank you for sharing. Take care, Mark

    • #26083
      Marianne
      Participant

      Mark –

      I wasn’t very nice to the lady who stopped me in the store but I think I got across my point.  It was G rated. Another person stopped and said she could not believe a person would react that way.  This was way before masks.

      Take care.  Enjoy that sunshine today in Cleveland.

      Marianne

       

      P.S. Waiting to see if I get approval for BI Cares for 2021.  If not, it is going to be an expensive year.  Plus changing insurance companies to save some $.

    • #26084
      Marianne
      Participant

      Anne –

      I get those questionnaires too.  Got one at yoga and asked them how I was to fill out part asking about cough.  I explained why I had cough and was told to answer No because cough is not Covid related.

       

      Marianne

    • #26087
      Mark Koziol
      Participant

      Hello Marianne, it is beautiful outside. It seems like all the leaves want to fall at once. I hope you are enjoying your day in central Ohio. Take care, Mark.

    • #26289
      Vishal
      Participant

      Even I get stares when I cough; I can’t imagine for someone with PF…

    • #26302

      Hi Vishal,

      Yes, this year has been particularly bad for those of us with the IPF/PF cough and getting stares from people who think we’re contagious. It’s been tough for many patients! I hope your Dad continues to do as well as possible, thinking of you.
      Char.

    • #26311
      Virginia Currie
      Participant

      Before the pandemic, I was chastised by Catholic churchgoers when I cough even I wear a mask.  My pulmonologist at a hospital where I work as an RN recommended Neurontin.  This medication really help my coughing up to this moment.  I’m so happy with lesser coughing.  Ask your doctor about Neurontin, this medication will really help you.

    • #26321

      Hi Virginia,

      Thanks so much for sharing this information about Neurontin and it being helpful for cough. I am going to look into this and imagine many others might as well, thanks for providing this helpful information.
      Char.

Viewing 13 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2021 All rights reserved.

©2021 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