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My COVID-19 Experience as an IPF Patient
Hello Forums Community,
It was very hard to disclose to all of you and the online pulmonary fibrosis (PF) community that I was diagnosed COVID+. I contemplated whether or not writing about my experience was the right thing to do, as the last thing I wanted was to worry anyone else. My family and friends worried enough when I told them that despite my best efforts, I ended up with COVID-19. However, my decision to write about it and share my story comes from my commitment to this community to always be transparent, open and supportive so if reading that I have survived the dreaded virus with IPF helps one other person, then I am glad I chose to write about it.
You can read my latest column here, which is called: I Have COVID-19. Here’s What Happened.
Another thing I wanted to highlight within my column is the fact that false negative swabs can and do happen. This is important for anyone (regardless of having IPF/PF) to ensure that they continue to self-isolate if they are sick, even if their swab for COVID comes back negative. Unfortunately, both those who are asymptomic and who have a false negative swab can be rapidly spreading the virus if they do not take self-isolation seriously. I hope this column helps ease some anxieties for the PF/IPF community, but one thing I forgot to mention in my column is: it is still very important we all continue to take the proper precautions to avoid getting the virus.
Take car everyone and happy Memorial Day weekend to those in the US celebrating!
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10 Replies
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Dear Charlene, I was SHOCKED when I read this news! Of anyone who is extremely careful about social distancing, I would have thought there would be no way that the virus could have found its way to you. I haven’t responded to any of the threads on this forum, but I read every day, especially during my 2 hour “anxiety awake” time during the night (probably because of the prednisone). I love everything you and Mark write and love your spirit. I am so sorry you had to endure another painful, fearful illness, and it gives me hope that you survived it. Sending you so many virtual hugs!
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@joybarney888gmail-com
Hi Joy,
Thank you so much for reading my post and reaching out via the comments. I’m so glad you chose to write! Yes, it was quite a shocker for me as well, along with my close friends and family who knew how intensely I’d been self isolating. I did track it down with public health to a hospital exposure, which was concerning because even then I thought I’d done everything right to avoid it. While there were a few days of discomfort, I am thankful to believe I had a very mild case of it.
I’m so glad the forums bring you some comfort during those tough times at night, though so sorry to hear you experience them regularly. I have such a love-hate relationship with Prednisone! Thank you so much for such kind words ,they really lifted my spirits after a tough afternoon. I so appreciate you being part of our community 🙂
Charlene. -
Hi Charlene
We’re so sorry and shocked to here your news, and so glad you appear to be over the worst of of it. Please take care and do everything to regain your strength, us IPFers look forward to your positive help and advice. Virtual hugs from the Austrzlian contingent.
Cheers
Mal
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I am simply stunned by your news. So grateful you are recovering from this horrible disease. Your courage in general is amazing, but especially now. Stay strong and know how much you are loved and cared about.
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@casey
Hi Karen,
Thank you so much for your kind words, they really mean a lot to me! I knew some members of the online PF community that I am so privileged to be a part of, would indeed be stunned or upset by the news of my sharing my COVID+ result. I was a little reluctant to do so as a result, but I thought it was important to show that you can survive COVID if you get even – even though it is of course unpleasant. I neglected to note in the article though (I realized in hindsight) that it is still of utmost importance to keep doing everything we can to protect ourselves from getting the virus in the first place, whenever possible. 🙂
Thank you again for your kind words Karen, and hope you continue to do well.
Charlene. -
Hi Mal,
So nice to hear from you my friend! I think of you, and many of our other forum members living in Australia. How are you doing?
Thank you so much for your kind words about my COVID+ result. I certainly continue to improve, and I’d say I am about 95% back to my “pre-COVID” self, which I am so grateful for. 🙂
Take care and stay safe!
Charlene -
Wow! What a shock. Very happy your recovering. All of us are concerned and scared of this virus and then to here you had the virus. We need you Charlene, you do a good job and the information we get is priceless from this website.
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So pleased you beat the virus, Charlotte.
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Thanks so much for your kind words Bill!
Stay well,
Charlene. -
@caneelbay1
Hi John,
Thank you so much for your kind words my friend! It is the collective strength of this forum and the wonderful members here that keep me going. While I am free of COVID now, the effects (ie. tiredness, lethargy etc) are still present so I really appreciate the support and encouragement. Thank you for writing! 🙂
Char.
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