I Take Extra Steps to Protect My Lungs as a Pulmonary Fibrosis Patient
Before my idiopathic pulmonary fibrosis (IPF) diagnosis in early 2016, I was oblivious to the importance of caring for my respiratory health. While it is easy to conclude that the respiratory system is required for human survival, I think many people take healthy lungs and the ability to breathe for granted. I know I did — until I could no longer breathe very well. Now I am a strong advocate for protecting and caring for your lungs.
Occasionally, I would see people walking around crowded areas, such as an airport, wearing a mask and my immediate assumption was that they carried something contagious. I should have thought that maybe they are being proactive in protecting their lungs or compromised immune system from someone else who might be sick. Because of my life-threatening lung disease, I have reframed my assumption and can now empathize with people who wear masks in public.
My chronic lung disease forced me to quickly appreciate what healthy lungs enabled me to do in life. When my lungs began to function poorly, everything became difficult physically. I now long for the days when breathing wasn’t such hard work.
I choose to wear a mask to protect my lungs from some of the more common things that might be risky for respiratory health. This includes wearing a mask around people who are sick with a respiratory virus or bacterial infection, such as the common cold or pneumonia. I also am very proactive in putting on my mask if I am in an area where people smoke. Lastly, inhaling cold air has become difficult for me since my IPF diagnosis, as it seems to trigger a constant cough. As a result, I choose to wear a mask if I will be outside in the cold for a prolonged period.
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These reasons for mask-wearing may come as no surprise to people outside the lung disease community. However, I’ve learned of many other unexpected scenarios that could compromise respiratory health. I am curious to hear from other patients living with IPF: Do you wear a mask or do anything to protect your lungs proactively in the following scenarios?
• At the hair salon: Are any of you are bothered by the hairdresser’s strong chemical odors? This didn’t bother me at first, but I’ve found I am more sensitive to the strong scents at the salon the last few times I’ve been there. I also recently took note of how careful the stylists are when handling hair dye; they wear special gloves to protect their skin from the chemicals. It really leaves me wondering if I should protect my lungs by using my mask in this environment. If the chemicals cannot touch their skin, I can’t imagine it is good for anyone to be inhaling those fumes, even indirectly.
• While getting gas: Fuel fumes can be strong when filling up your vehicle, and the smell of that which powers your engine likely shouldn’t be anywhere near your lungs. That said, it seems impossible to prevent this, as most of us need gas to fuel our vehicles. Do you do anything to prevent inhaling fuel fumes when filling up your vehicle?
• Pet dandruff: This is a tough one for me, as I know pet hair can cause significant allergies for people. But I let my dog sleep in bed with me. I’ve never been told by my doctor to stop this, or that her being so close to me could cause damage to my lungs by inhaling dandruff that inevitably comes from any pet. I know doctors have cautioned others living with IPF about this. To try to reduce the amount of fur or dandruff I could be inhaling, I wash my bedding and change my pillowcases a lot more than I ever did before.
• Dust: For those of you still able to physically clean your own homes, do you wear a mask when dusting or cleaning? Dust causes me to cough significantly when inhaled, and as a result, I have my home cleaned more frequently. I also change the filters in my home and car more often.
Have you been more proactive in protecting your lungs since your IPF/PF diagnosis? Continue this discussion in our PF forums.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Jane Walden
I have pf but not ipf
Charlene Marshall
Hi Jane,
Thanks for reading my columns and for connecting via the comments. That said, sorry to hear of your PF diagnosis... was it recent? Regardless of the "type" of pulmonary fibrosis, it is so nice to hear from others and connect about how to best manage this disease. If you'd find it helpful, please feel free to join our PF forums at: http://pulmonaryfibrosisnews.com/forums/ It is a great place to connect with others regardless of what kind of PF you have. You'd be most welcome there :)
Feel free to write anytime.
Charlene.
Lesley
I always find your blog and forum activity a bit of a boost. I am 69, diagnosed nearly 3 years ago when I sometimes felt my lungs were stf. What a shock this diagnosis was. However, still walking, swimming, biking and working part time..so I am grateful for all the positives in life. I still struggle with FOMO..fear of missing out on things that happen in my grandchildrens lives that I will not be around for, and the knowledge that my condition is slowly changing and there are challenges ahead. You answer questions so open and honestly, and are an inspiration to all the PF warriors..young and old.
Charlene Marshall
Hi Lesley,
Thank you so much for reading my columns and for getting in touch. Your kind comments touched me in a special way today, as I am struggling a bit with what I've "lost" as a result of my illness, and your kind words certainly gave me a boost. The right people tend to come into my life just when I need it, and I am so thankful for that. I certainly can relate with the feelings of FOMO, along with knowledge of all the challenges that are ahead. Have you found a good way to help you cope with those feelings? If so, I'd love to hear! I'm trying my best to take it 'just one day at a time', but when most of my life is still ahead of me as a 31 year old, that is tough! Thanks again for writing and feel free to connect anytime. Thanks again for your kind words as well!
Charlene.
Steve Sanders
I read your column with interest. I was also diagnosed with IPF in 2016 and suffer with exactly the same symptoms you describe in your post such as cold air and petrol smells etc.
Charlene Marshall
Hi Steve,
Thanks so much for reading my columns and for getting in touch via the comments. While I certainly wish you couldn't relate to what I was going through, meaning you weren't living with IPF either, it is comforting to know that others experience the same symptoms as us, isn't it? This is why I find so much comfort in our PF forums, which can be found at: http://pulmonaryfibrosisnews.com/forums/ if you were interested in joining us! Hopefully you have found some helpful solutions to the difficult smells and breathing in the cold air. Sending you positive thoughts and wishes!
Charlene.
Lesley
Hi. I read with great interest your comments and have been folowing you on forum.
I am 69, diagnosed 3 yrs ago, living in NZ. There seems to me very little in way of support groups here. I did contact Respiratory Dept at local hospital, but only received an email informing me what I have is a "rare disease" and suggested I contact a main centre! Anyway, I used to be secretary in hospital and ironically worked sometimes for a chest physician, so I knew the terminology -but have learnt the hard way what it really feels like to be told you have this wretched disease. I feel I am lucky in some ways. I do not require oxygen yet, I am still fully active, swim, walk, cycle and work part time. I hear the crackle when lying on my side at night and do realise that
I am in the honeymoon phase. I am trying g to get the most out of my days, and try not to dwell on the negatives. I have a 4 monthly review with LFT'S, xray etc in the next couple of weeks. I dream there will be a new drug to help prolong life discovered daily!
Charlene Marshall
Hi Lesley,
Thanks so much for reading my columns and reaching out via the comments, I always love hearing from others about their thoughts although I wish it wasn't this cruel disease that connects us all. Really happy you're part of our forums as well :)
So sorry that was the response of the hospital, how frustrating is that? Just because you have a "rare disease" (which I'd also argue isn't true, given the prevalence of it is equal to the amount of people living with breast cancer in the US!) doesn't mean you shouldn't be offered support. Do you think any groups or support offerings will be made through your main centre in NZ? You have a really good attitude and philosophy about not dwelling on the negatives, I think this is important too and certainly admirable as it isn't always easy. So glad you're able to do still do the things you love right now. Sending you good thoughts for your upcoming appointments, and yes, I am there dreaming with you that a new medication will offer us a cure or a prolonged life without many side effects.
Thanks for writing!
Charlene.
Mary Echberg
Hi Charlene, I read IPF news and of course your columns with great interest - and I thank you. You sound like a very brave young woman and I wish you all the very best.
I am 71 and was diagnosed with IPF October 2015. I do use face masks from time to time - I ride a bike 3-4 times a week - only about 10 km and have used a face mask on cold days; I do hav the house cleaned weekly; and we have 2 Jack Russells which I have clippedregularly to keep the fur down - and yes they do make their way too our bed. Bu I could do more as you suggest. Cheers. Mary from AUS.
Charlene Marshall
Hi Mary,
Thanks so much for reading and connecting via the comments. I'm so glad you find the site helpful, and I love hearing from readers. Your kind words made my day today, thank you for that and please know that I write for all the people living with IPF around the world so thank you for sharing a bit about your story with me. It sounds like you're managing your IPF quite well, kudos to you for still biking regularly and 10km is no small foot, especially with a lung disease. Glad the mask is able to help you on cold days! Aren't our "furbabies" just the best? I truly cannot imagine my life without mine even though her hair is everywhere!
Thanks again for connecting and wishing you well.
Charlene.
Ann Wanamaker
A mask is great, but!! I wear glasses and they fog up...I’ve found some eye glass cleaners are better than others, but I have to see...lol. Help?!
Charlene Marshall
Hi Anne,
Thanks for writing and connecting back through the comments. I definitely feel your pain re: the masks as a fellow glasses wearer as well!! Sometimes I don't wear my glasses with my mask, but that doesnt last long as I am pretty blind without them and I can get a headache (I am prone to them) if I don't have my glasses on. I wish I had some good suggestions for the glasses when wearing a mask but unfortunately I don't LOL I just do my best to see and protect my lungs :)
Cheers,
Charlene.
Larry Travis
Hi Charlene,
I keep a new mask with me at all times. I try to avoid large groups, don’t use public transport, don’t fly, put my mask on when grocery shopping, go to full serve gas station, use hand sanitizer every time I use a bank machine or handle cash( I keep a small bottle in my pocket).
I am 71 and was diagnosed in 1915
I continue to work(in curling arena), exercise and weight lift, bike although it is getting harder.
Charlene Marshall
Hi Larry,
Thanks so much for reading my columns and getting in touch via the comments. This is a really important topic to me, so I always appreciate the time others take to write me. I also keep a mask with me at all times, and am getting better at wearing it without worrying about what others think. I also keep a small bottle of hand sanitizer in my purse and use it as often as I think of it in public places, especially before eating. I don't use public transport in general either, but I definitely do still fly and vacation as this is something I'll really have a hard time giving up when the time comes.
Kudos to you for continuing to do those extra exercises, I know that is much easier said than done. I hope you can continue doing this for a long time :)
Cheers,
Charlene.
Hendri Klaase
I'm from South Africa. I was recently diagnosed with COPD.I'm on home oxygen and go hospitalized at least once a month for bacterial pneumonia. I experienced difficulty breathing with a musk. I am 58 years old. Do not make use of public transport
Charlene Marshall
Hi Hendri,
Thanks for reading my columns and reaching out via the comments. Sorry to hear of your recent COPD diagnosis, and your need for home oxygen. Yes, bacterial pneumonia is terrible to deal with and I hope you're on the mend soon. Take care and continue to do the best for your lungs!
Kind regards,
Charlene.