Household Hazards That PF Patients Should Avoid
I’ll never forget the day I was diagnosed with a terminal illness. After months of shortness of breath, a dry, chronic cough, and unusual fatigue, I finally sought an urgent care physician’s opinion about why my lungs were being so problematic.
I’d tried multiple antibiotics, inhalers, and steroids to relieve symptoms of what I thought was a stubborn cold. I was diagnosed with idiopathic pulmonary fibrosis (IPF) a little over three years ago, and I’ve been learning to live with it ever since.
Most physicians consider it rare that a young adult is diagnosed with IPF. However, I am meeting many young adults in various online communities who are also living with this life-threatening lung disease, so I wouldn’t consider it as rare as people might think.
I was diagnosed at 28, and I vividly remember my doctors telling me they were unsure about how this disease would progress. They said it might be slow and have very little impact on my daily life, or things could change rapidly for me. Regardless of how this disease progressed, I would have a role in taking steps to protect my lungs from things that might exacerbate the fibrosis.
Since my diagnosis, I’ve become very aware of things that might affect my breathing or cause further damage to my lungs. I avoid secondhand smoke at all costs, even if it means waiting in my car until someone finishes a cigarette and being late to a meeting.
I also opt to wear a mask in environments where germs could be passed around, such as an office space or airplane. If I know others are sick, I will cancel social plans altogether. The chance of a respiratory virus causing damage to my lungs is just too great, and I’m not willing to risk it.
I’ve also made changes in the household products I use. I didn’t know how many airborne hazards can damage lungs that are already compromised from an interstitial lung disease (ILD), such as IPF. Inhaling toxins can trigger a chronic cough or cause an acute exacerbation, which almost certainly will result in a loss of some lung function.
While it may not be realistic to avoid the following hazards at all times, eliminating them from your home gradually or switching to a natural product may help maintain your lung function.
Did you know these household products can be hazardous to your lungs?
- Candles and essential oils: There is a lot of buzz about the use of essential oils for various ailments. While I enjoy the scent of various oils myself, I can’t help but remain skeptical about their health benefits. If you choose to diffuse oils, I’d highly encourage you to ensure they are as pure as possible. I no longer choose to scent my home with candles due to the danger of having fire near supplemental oxygen and because of the chemicals that are released into the air while the candle burns.
- Cat litter: The dust that cat litter emits when I empty my cat’s litter bin is enough to trigger a terrible cough. If I could avoid this I would, but it’s a task that needs to be done. Cat urine can also be very potent and I find the smell very difficult to be around. When I handle the litter bin, I wear my Vogmask and have it tightly secured around my nose and mouth. Quick tip: A PF Forums member shared with me that there are dustless cat litter options!
- Bathroom mold and cleaners: It is important for patients with IPF to avoid mold at all costs. Oftentimes, it can cause an ILD to develop. Even those with healthy lungs should avoid exposure to mold or harsh bathroom cleaners.
- Dryer lint and dust: Unsurprisingly, dust and lint particles are small enough to be inhaled, which can irritate the lungs, often triggering a cough or difficulty breathing. When cleaning your home, take precautions to avoid inhaling these small particles.
Do you know of any other household chores or products that cause you difficulty breathing or are considered hazardous to your lungs?
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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
Chuck Harrison
Hi Charlene , I just noticed that you were diagnoised with ipf the day after I was ! April 6th 2016 . Funny ole world isn't ? Lol .
Well at any rate , I'm really writing to find out how your doing , and wondering how your faring in your daily life ?
I purpose staying away from this hurts , this wrong that kinda stuff .
I just don't want my life to be defined by constant complaing about me ,
I'm truly interested in you :i.e. Your health , the kind of struggles your dealing with or just plain getting know you . This make sense ?
Charlene Marshall
Hello my friend!
What a crazy world - diagnosed one day apart! As always, thanks for reading my columns and reaching out via the comments... I love hearing from you! Excuse the brevity of this reply, I'm trying to get caught up on a few things before going to bed for the night but I can absolutely reply to details about me at a later date (just remind me - my mind is focused on my vacation coming up next week :-)). Some days are good, others are worse but in general I can still do many of the things I like to do, just a lot slower. I'm actually in the midst of writing a column right now about the importance of pacing yourself as a PF patient. I'll definitely email you with some information, but feel free to connect with me directly if I forget: [email protected]
Cheers!
Wundrbar
One way to avoid litter dust is to use the innovative litter systems that use permanent litter like Tidy Cats Breeze or the Cat-illac Cat Toilet. These systems use a dustless granule and with them you never have to buy or change litter again and stop filling our landfill sites with millions of tons of litter. Although the Breeze system uses litter pads that need to be replaced, the Cat-illac system uses a large holding tank that you just pour into your toilet. These are very easy to use and I highly recommend them.
Charlene Marshall
Ah, really great information Wundrbar ... thank you so much for sharing this! I can imagine that many of us living with IPF and who have cats will benefit from this great information. Much appreciated :)
Charlene.
Joe O'Hanlon
Hi Charlene,
I am 77 and have suffered recent excacibations. So, I feel that I am in my last year. The association that I wish to make is regarding irritants. When I was at work in my late 50's (58 - 60), I would work late, clearing up my desk, maybe for an hour or so. The cleaners came in and would use pressurised spray cleaners on the desks. I found the atmosphere created upset my breathing. I requested that they do upstairs first, but found the same as it came though tbe air conditioning. I eventually got them to change to a water diluted cleaner and put into hand sprayers which solved my problem.
I was some 14 years later that I was diagnosed with IPF. As we all know it is untreatable, so I chose not to tell my family, until the symptoms would become obvious. That occurred last July, just short of 6 years after the initial diagnosis. I knew that it would be necessary to give them time to come to terms with my immanent departure but saved them the worry for all that time. It was also a great discipine for me to do / atempt all my normal activities.
I have many observations but have gone on too long. Another time. Joe.
Charlene Marshall
Hi Joe,
Thank you so much for reading my columns and getting in touch via the comments. Sorry to hear you've experienced recent exacerbations, I remember how scary that was for me when I went through it. Your suggestion is a really important one - cleaners can be so harsh on our lungs and breathing, and usually corporations who have a lot of space to clean, disregard the need for natural products. It's so hard to accept that, isn't it? Sorry they didn't listen to your advocating earlier. That is tough! Hang in there, and thank you for your kind words and writing to use. Wishing you nothing but the very best.
Kind regards,
Charlene.
Ken Vetters
Regarding irritants that you should avoid, I would add that while cooking, recipes often call for spices to be sautéed before adding them to the dish. Be very careful not to learn over the pan when you add the spices to the sauté pan. The resulting flare up will absolutely take your breath away. Extreme coughing results. I’m 82 years young and was diagnosed with IPF five years ago. Still getting by with far less activity than in the past. Hang in there everyone.
Charlene Marshall
Hi Ken,
Thanks for reading my column and getting in touch via the comments. This is a really interesting suggestion regarding irritants and one I wouldn't have known about, so thank you for sharing. Undoubtedly this will help many others as well. Thank you!
Kind regards,
Charlene.
George Crowe
Hi Charlene,
As far as irritants go I have a list. I get fits of coughing from aerosols of all kinds, any cooking with hot oils, cooking smoke and even taking a shower when the water particles irritate my cough. Of course, there are all the other usual sources of particulates from garden fires to barbeques, smokers and vehicle exhausts. I try to avoid most of them but C'est La Vie!
Best regards,
George Crowe
Charlene Marshall
Hi George,
Thanks for reading my columns and getting in touch via the comments! This is a really important topic, so I am sure others will benefit from your experience here as well. Interesting that you experience a cough from hot oils.... I definitely do from cooking smoke, or any kind of smoke like cigarettes, vaping etc. Sometimes the heat and steam of a shower bothers me too. Do you wear a mask to avoid them? I try to avoid large crowds of people because I never know what they might do - ie. have a lit ciagrette going, but ultimately it is impossible to do all the time. Thanks for writing us!
Charlene.
George Crowe
Hi Charlene,
I now have a dehumidifier that resides in the kitchen. This is switched on if cooking is underway removing high humid irritating vapours. I also have the dehumidifier on auto for two hours before rising in the mornings.
I am also going to try a particle filter. I notice a lot of airborne dust particles when the sun shines into my home. I will let you know if that provides further cough relief.
Best regards
George Crowe
Charlene Marshall
Hi George,
Thanks so much for reading my column and reaching out via the comments. What a great idea to have a dehumidifier in the kitchen to release the steam or humid from cooking. Goodluck with the particle filter, do let me know if you notice a difference. Also remember to regularly change your furnace filter, that is important too :)
Take care,
Charlene.
David Wilson
Hi Charlene, I had your page sent to me by a member of a support group here in Melbourne that get together frequently to talk about our illness and pass on feedback after lung transplant to new people with the disease and newly transplanted patients.
I was very interested in the feedback from others on your site with regards household air pollutants. I am 65 and have never been sick or in hospital apart from appendicitis when I was 17. I’ve always been fit and healthy, athletic, marathons and fun runs. However in 2015 due to constant shortness of breath I was diagnosed with IPF. After constant hospital visits, drug trials and procedures I put on the transplant list in Jan. 2018 and had a single lung transplant in March 2018. My health has been up and down ever since and I have been hospitalised many times since. Shortness of breath just walking to the bedroom or bathroom. Every clinic, blood test, bronchoscopies since have all come back clear. The lung doctors just kept saying their is nothing wrong with your lung.
At the time I was in hospital having my transplant my wife was in another hospital having major cancer surgery. I had to renovate the bathroom to accommodate my wife’s new needs and discovered that the bathroom had some mould in it which confirmed my struggling to breath after got out of the shower. Since upgrade no issues. I spoke to my rehab physiotherapists about this and they did some research and came back with pages of notes on household air quality and pollutants. I read this over and over with a lot of feedback from asthma patients who said that after putting in an air purifier using it in the rooms used frequently it made a huge difference to their breathing. I decided to try this and bought a unit purposely made for Australian conditions and my shortness of breath, rehabilitation and activities have improved immensely over the past 2 months. Not saying that this is the answer for everyone but after 18 months post transplant not feeling any better than before transplant it has changed my life. Hope this my help other IPF people on your site.
I wish you and everyone else suffering with IPF/ PF all the very best and stay positive. It’s not always easy.
Regards David ( 1Bunglung ) my new support group name,?
Charlene Marshall
Hi David,
Thanks so much for getting in touch and reading my columns - I love (and feel so honoured) that my writing is making it's way to Melbourne! I did my Master's there in 2015 and 2016 and love your beautiful country of Australia. I hope to return in 2020 actually and visit Melbourne, as I am regularly in touch with a friend who had a transplant at the Alfred. He is amazing and I'd love to be able to see him again.
Sorry to hear of your diagnosis, and subsequent struggles post single lung transplant. Do the doctors have any other suggestions about what might be causing the shortness of breath, if the lung looks healthy in all the scans/tests? It sounds like it was primarily the mould discovered in the bathroom that was the issue, how terrifying! I'm so glad to hear the renovations helped, along with the documents that the rehabilitation PT found about household pollutants. I can't believe how impactful those things in the very environment we're in every day can have on our lungs/breathing. So glad the air purifier has helped as well - I will share this with our PF community and imagine it will be helpful for others as well. Do you have the documents that your team came up with, David? I'd love to read them if so!
Wishing you nothing but the very best and thank you for writing. If I make it down to Melbourne next year to visit Tony, I'll definitely be in touch as I'd love to meet you! Take care "1Bunglung" ;) - this made me laugh!
Kind regards,
Charlene.
stella carnahan
If you have pulmonary fibrosis, are you on oxygen? If so, how do you do the traveling. My husband has pulmonary fibrosis and is on oxygen. We have a ION portable unit that is okayed by the airlines. My question is, is it bad to fly with PF or does it matter?
Charlene Marshall
Hi Stella,
Thanks so much for writing and connecting via the comments. I do have IPF and yes, I use supplemental oxygen. My concentrator is FAA approved and I can take it on board the aircraft with me, as long as I have sufficient battery power for it. The airlines require 1.5x the length of the flight worth of battery power for the oxygen concentrator. Sometimes I require medical documentation and other times I don't, it depends on the airline so I always phone ahead to check in about this. In terms of whether or not is safe to fly, it really depends on your husband's condition. The cabin is pressurized of course, though at a lower amount than normal for us so this can be difficult for some patients. Your husband's physician and conduct a fit-to-fly test (I think it is called this, or could be something else but similar) and assess whether it is safe for him to fly. It simulates the reduced pressure in the cabin and monitors his levels. I'd recommend checking in with this physician about this. Hope this helps :)
Charlene.
Mrs Pauline Campbell
Hi Charlene, just had to say the info being shared is brilliant. I look after my Mum who was diagnoised with IPF a few years ago, she is now at the grand age of 92. The doctors believe she has had it most of her life so has been extremely lucky that things are only progressing now. My brother has also been diagnosed (he's 64). I never even thought of cleaning products being an issue an will definitely be getting an air purifier. I wish you so much good health for the future an once again thank you. Take care an all the best - Pauline
Charlene Marshall
Hi Pauline,
Many thanks for reading my column and reaching out via the comments! Your Mom is very lucky to have you by her side, but so sorry to hear of her diagnosis and your brother's as well. This disease is so cruel, and knows no boundaries it seems. I didn't think about the impact of cleaning products on my health either, until I started looking at more natural options for cleaning. I now use oil-based products (also smell amazing!) or natural cleaning products only as I don't need anything else effecting my lungs. Thanks for your kind words and sending best wishes to you and your family!
Charlene.
Elizabeth Hancock
Hello Charlene,
I have always enjoyed reading your column and comments from others. I was diagnosed in 2017 and have found my life considerably restricted. It’s difficult sometimes to recognise the person I used to be. I have been prescribed OFEV and will start shortly. Holding off until after Xmas because of the side effects I am anticipating. Does that sound a little foolish?
Anyway I have broken the ice and sent a message!
Elizabeth x
Charlene Marshall
Hi Elizabeth,
Thanks so much for reading my columns and reaching out via the comments - I am so glad you sent a message! It is such a privilege to connect with readers, and I firmly believe we're stronger in facing this disease by being together and supporting one another. Thanks for your kind words about my columns!
Your words about the difficulty of recognizing the person you used to be really resonate with me - it is so hard to think back to the time when breathing and fatigue didn't impact our daily activities, isn't it? I try not to spend a lot of time there but I also think it is important for the grieving process. Be gentle with yourself when recalling that time, it sure is a harsh reality of this cruel disease. As for hold off on Ofev, I don't imagine a few more weeks will make a significant difference in disease progression unless your physician said it is rapidly progressing? The side effects were tough for me at first, if you struggle with them once you do start OFEV, feel free to reach out. I am also on this drug, and found some things that work pretty well. Enjoy your holiday season and keep in touch. Thanks again for writing :)
Charlene x.
Jojo
Hi Elizabeth
I also have been diagnosed with ipf and I am to start ofev too. I just received my prescription and receiving it really hit home that this is it. I decided to wait to until Boxing Day to start and hopefully the effects will be minimal. I still work so hoping I can continue to do so and manage this devastating disease. Let me know how things go when you start. Thanks Jojo
Barry Taylor
Hello Charlene
I have just landed on your column having just been diagnosed with IPF and it has been comforting to read. Thank you. I start OFEV in January and have been worried about the side effects. You say these were tough at first. Does that mean that the side effects ware off or that you got used to managing them or both? I'm an anxious person and perhaps worry too much.
Barry (South Australia)
Charlene Marshall
Hi Barry,
Thanks for reading my column and connecting via the comments! So sorry to hear of your IPF diagnosis - be gentle with yourself in the next few weeks, as I remember feeling a lot of turmoil when I was first diagnosed, but am hoping to alleviate some of that with my writing. It is so important to realize that you can still live with IPF! Yes, OFEV was hard on me at first, especially the side effects but I've been able to work through them with some "tricks" I've learnt: dealing with the GI side effects, I was told to have immodium on hand. What is interesting is, the oral tablet didn't help me at all but the sublingual one - more expensive, but dissolves under the tongue - has actually been very helpful. I also have to eat a small meal with each dose, drink lots of water and I find it helpful to avoid dairy. Feel free to reach out any time once you start the OFEV - [email protected] and we can chat through them. I also know a lot of people who were started on the 150mg dose but that was intolerable for them and the 100mg works a lot better for them. Hang in there!
Charlene.
Judy Rosenthal
Good day to you. I was diagnosed 4 yrs ago. Both of my lungs are completely scarred. I made the decision to not receive treatment including the biopsy or be put on a transplant list. No one seems to understand my fatigue. I also fight severe anemia which I receive iron infusions for. But even when my blood tests are normal I'm still tired. I assume it's the IPF. When I catch a bug the recovery time can last 2 months now. I do believe I'm doing well and I'm not on oxygen. I still feel I made the right decision for me. Oh I forgot to mention I'm 67. Thanks for your page and comments. Hope you're doing well.
Charlene Marshall
Hi Judy,
Thank you so much for reading my columns and reaching out via the comments. It is always nice to hear from others, though I wish none of us were plagued by this awful disease. Sadly, you're likely right about the fatigue and IPF: it is constant, and sometimes for me even if I am not physically exhausted, I feel mentally or emotionally fatigued. It can be so hard to constantly battle this, and even harder to try and describe what it is like for others. Oftentimes resting doesn't even alleviate our fatigue! I caught a virus about 6 weeks ago now, and am still trying to get over it. Glad you're managing okay otherwise, and not requiring oxygen at this time. Feel free to connect ay time - it really helps me to speak with other patients who truly "get it". Thinking of you Judy!
Warm regards,
Charlene.
Bobbi
Hello everyone,
My name is Bobbi. In a review of my right shoulder x-ray by a radiologist, I was referred to a pulmonologist to discuss the scarring in my upper right lung. After a couple of years and a couple of pulmonologist I had a lower right lung biopsy performed with the results coming back that I had Idiopathic Pulmonary Fibrosis. This was in 2012, I was 60 years young. I'm now living in Alaska, after being promised I would have family care for me up here, which has fallen through. During my 3 years up here and 2 different pulmonologist caring for me. I have gone from having Idiopathic Pulmonary Fibrosis to non-specific interstitial Pulmonary
Fibrosis. Putting my care in a nut shell, we don't know what is causing your disease, but its terminal.
It's not what, or how, or even why, at this point, it's only making it day to day.
I have enjoyed reading this column and it's responsive nature from others, so I thought I might join in to learn more. Thank you for letting me share.
Bobbi
Charlene Marshall
Hi Bobbi,
Thanks for reading my columns and getting in touch via the comments. It sounds like your experience mirrors many members on this forum, unfortunately. I hope the biopsy went okay, and sorry to hear the family support in Alaska fell through - NSIP can be just as tough to deal with as IPF, no doubt. I'm glad you're finding the columns helpful and thanks for being brave and writing to us. Feel free to connect any time, and yes, as you say: enjoy each day. That is important for all of us!
Sincerely,
Charlene.
Julie Grande
Hello, Charlene
I’m a 64 year old woman who was diagnosed with IPF a little over a year ago. I did not handle that news well. I’ve been on the road to a transplant, because that’s where my doctor has led me. However, I have never felt at peace with this decision. The thing is, I was never given any other option. Or no other scenario was ever laid out to me. I feel like I’ve wasted a year running around to doctor’s appointments, etc. that I could’ve spent with my family. Then I came across your column, and my spirits were lifted greatly! No one would answer me when I asked how much time I might have to spend with my family if I didn’t have a transplant. It’s so clear to me now that of course all the doctors wanted me to have a transplant! I don’t think I need to say why. I just want to thank you and all the people who wrote in above, for giving me the gift of first-hand knowledge; and for lifting some of the stress off my shoulders.
I’ll be back for more information.
Julie
Charlene Marshall
Hi Julie,
Thank you so much for reading my columns and getting in touch via the comments. I appreciate hearing a bit of your story too, although so sorry to hear you're having to contend with this cruel lung disease as well. Unfortunately for many of us, since IPF doesn't have a cure, transplantation is the only option for long-term survival though it shouldn't have ever been pushed on you as the doctor's agenda. Many people live a long time and never have a transplant, or before they have to be considered for one and you're right: that quality time with friends and family is important. I'm so glad my columns are helpful and some of my experiences resonate with you. Feel free to write any time, and I am sending you nothing but the very best.
Kind regards,
Charlene.
Ceil Terrazas
Good Evening Charlene.
I am a very active 81 year old, living in Southern California, in an Inland Valley.(Higher than the low desert, Lower than the high desert). I lived in Los Angeles County, during "The Bad Smog Years", 1960's & 1970's, so I have known, for some time, that I have lung damage. I may have had PF most of my life, however I hardly ever cough. I wasn't symptomatic, when it was discovered,at least, not coughing, but the Constant Fatigue & slight shortness of breath are there, especially doing household chores. I had a Perotidectomy 11/2017. 90 days thereafter, I had developed a Huge bloodclot in my left leg ( woke up in the AM with Paralyzed, 90 days later, ad an after effect). My PCP was very concerned ad to WHY I had the clot & WHERE it had been created. I have been seeing a Hematologist/Oncologist ever since, with Numerous blood tests & Imaging, being tested for Everything, from Lymphoma to Multiple Myeloma, with negative results.They, recently, did a Complete Skeletal Interview, looking for Bone Cancer Damage=Negative,.however, the results of that test & a CT Scan they took, showed PF..maybe in its early stages (?). I had a PCP appointment, today, he said very little about the PF, asking me how my RA is. I guess I am still in the "Monitor it, and we'll see" stage. NOTHING was ever said to me, about the Prognosis of Dying in 3-5 years. It is terrifying.
I don't smoke or drink. I have used Only Natural cleaning and personal products for years. I use Tidy Cats Low Dust Clumping Litter, for my cats, & do not lean over the box when sifting. Changing the sand, I insert the entire pan onto a Large plastic bag & turn it upside down,emptying the Litter, making it almost completely dust free. I have lived in this area for 7 years. As it is an extremely low humidity, Dusting is required more frequently, so I am sure fine dust particles are in the air also. So far, I am showing no other symptoms, other than Extreme Fatigue and occasional shortness of breath. I only cough occasionally, (dry)during the day,and right after I go to bed at night (once or twice). I am Yerrified, that "The Worst Is Yet To Come".
I happened across your site, while researching the disease. It has been a delight reading your & all the friends comments. I look forward to hearing more from all of you.
Charlene Marshall
Hi Ceil,
Thanks so much for reading my column and reaching out via the comments. Sorry you've had to find our platform, but I do hope you find it helpful: welcome! I am (if the COVID cooperates) headed to southern California next month :) Sometimes PF develops secondary to RA, did your PCP ever think that might be a possibility? So sorry to hear your doctor wasn't thorough in giving your diagnosis, in terms of explaining the disease to you. One thing I try to encourage everyone is that the 3-5 year prognosis, is not only outdated but that I also know many who have survived that window of time. I hope the symptoms of this terrible disease continue to elude you for years to come, and that it is slow progressing. I will keep my fingers crossed for you for that. Hang in there, and feel free to write anytime.
Sincerely,
Charlene.
Ceil Terrazas
Sorry. I did not PROOFREAD my comment. There are Some Changes.
1. I am TERRIFIED
2. I insert my Cat Litter pan, Completely INTO a large plastic bag, thereby trapping any dust, inside.