How I Deal with Heat Since My Pulmonary Fibrosis Diagnosis
Patients living with a life-threatening lung disease might struggle to breathe in humid weather. However, since each patient’s condition is unique, some people living with IPF find that humidity isn’t as bothersome as frigid temperatures are for their lungs.
Following my IPF diagnosis, my pulmonologist gave me advice on adjusting to fluctuating temperatures.
A few weeks ago I posted on our Pulmonary Fibrosis News forums about how difficult it is to adjust to fluctuating temperatures.
April was a very strange month, weather-wise, for me. I live in Canada and one Monday in mid-April we were digging out from an ice storm that left many people without power. But on the Friday of that same week, temperatures were in the mid-20s degrees Celsius (70s degrees Fahrenheit). That’s a drastic jump for people with respiratory issues, and a major adjustment for our lungs to make.
Despite summer being my favorite season, I am struggling with the warm weather. Temperatures feel like they’re in the 30s degrees Celcius, and they’re still climbing.
I struggled with the heat last summer, and my lungs have declined since then. I am noticing a major difference in my heat tolerance.
I want to be outside, enjoying the weather. However, I find I’m short of breath in heavy humidity, and I become fatigued very quickly, especially if I’m carrying things in the heat, even for a short distance, like when bringing groceries from the car.
I wonder how I’m going to manage running errands, going to appointments, or work meetings if I’m already this intolerant of the heat. I am going to have to adjust, as it looks like the warm weather is here to stay.
As a patient living with IPF, which one bothers you more: humidity or cold temperatures? If it is the heat, how do you keep yourself cool in humid summer weather?
Below are tips for keeping cool, based on my experiences and others’ in the IPF community.
- Pre-cool your car: This strategy is so effective for me that I have considered paying extra money to install an automatic starter in my vehicle. The humidity is difficult enough on my lungs, but breathing in a vehicle that has been sitting outside in the heat all day is next to impossible. Thankfully, friends, family, and colleagues have gotten into the habit of leaving ahead of me and starting my car to cool it down before I get there.
- Don’t carry excess baggage: Inconveniently, this includes lugging oxygen tanks around. Whenever possible, ask people to help transport your oxygen or bags in the humidity, as the strain of carrying heavy objects can make breathing more difficult.
- Sleep with a fan: I enjoy sleeping with the AC on, and although I’m usually bundled up to keep my body warm at night, sometimes the heat feels “trapped,” and my breathing is worse. I enjoy having a small fan blowing directly on my face at night in addition to the AC.
- Drink plenty of hydrating fluids: If you’re like me, you don’t always drink enough fluids during the day. I often forget the importance of drinking hydrating fluids. Water, Gatorade (if sugar isn’t bothersome to you), and fresh juices are refreshing and hydrating.
- Be wise about when you’re outside: Choose to be outside during the early morning or evening on really humid days. This lessens your exposure to peak temperatures, including the mid-afternoon sun.
Join the discussion on our Pulmonary Fibrosis News 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
Earla
The heat is definitely the worst for me. Hot car the absolute worst. Cold air is bad too but I wear masks or wrap heavy scarf around my face. Would love to hear if anyone has suggestions for dealing with the heat. This past week our heat index (feel like temp) has been around 105degrees Fahrenheit. Just thinking about going out exhausts me.
Charlene Marshall
Hi Earla,
Thanks for reading my column and contributing your comments. I couldn't agree more re: the heat of a hot car being terrible to breathe in. My colleagues often start my car for me at the end of the workday and crank the AC so I go into cool air as opposed to heat. It is nice to be able to have a solution to deal with the cold air (ie. scarf or mask) but the heat is tough. I'm also looking for tips on dealing with humid temperatures, however, a good place to start is the feedback from others on our pulmonary fibrosis news forums: http://pulmonaryfibrosisnews.com/forums/ ... there are some good suggestions there :)
Thanks again for connecting and feel free to write any time. Best wishes to you!
Kind regards,
Charlene.
Risa
For indoors, use a good dehumidifier. We recently researched (April 2018) and bought a Frigidaire 70 pint Dehumidifier Model: FFA77033R1E0 for ~$235 on Amazon. Also helps to prevent mold. You will notice the difference in the ambient air quality. It has been working great with regular use for 2 months so far. Our house is about 1675 square feet on one floor, and we keep it mid-way in the house.
Charlene Marshall
Hi Risa,
Thank you so much for reading my column and contributing to the comments. Your experience has been helpful for me, and I am confident it will help others as well. Helping the air quality in terms of temperature is great, but an added bonus would also be the mould prevention. I'll make sure I share this with others who I speak with in person as well (who might not see your comment) and who are looking for a good way to deal with the heat. So glad to hear it is working for you, and thanks again for sharing!
Best wishes to you!
Charlene.
Mark G Crossley
I was diagnosed with pulmonary fibrosis a little over 4 years ago. The first thing the doctor told me when she told me what I had was I had to stay out of the Heat and humidity. Due to the fact that I live in Georgia that's kind of hard. I have noticed over the last four Summers that the Heat is just like Kryptonite to me if I were Superman. I definitely have to do my errands and shopping early mornings or late night.
Ron Cade
I'm at a loss to know the difference between IPF and PF. I'm thinking the results are the same so why are the treatments different?? I'm on Esbriet. I have degraded some in the last year. It seems muscular nor breathing exercise don't work. Maybe I'm not doing enough to make a difference. I just don't know what's required. I'll see about the temperature and humidity effect soon. I keep plugging away. Everyone hang in there. Cheers!
Charlene Marshall
Hi Ron,
Thanks for reading my columns and getting in touch regarding the difference between IPF and PF. The short answer is that, I understand the difference between the two to be very complex, far beyond just what causes the disease. Idiopathic is just a fancy word that means the doctors aren't sure where the disease came from, which is my case: I have no family with any history of lung diseases and I never lived or worked in a home where my lungs were knowingly exposed to smoke, mould or other toxins. As a result, my doctors can't figure out why I ended up with IPF so young and as a result they have labeled it as idiopathic. PF can be caused by a number of different factors, as it can be a secondary disease to the treatment of other ailments, ie. people can get PF as a result of the chemotherapy they receive for cancer treatments. Other than this difference (ie. how the disease started), I don't really understand the differences either and I'd love for others to comment back to us if you have a more comprehensive understanding of the difference between IPF and PF. I also know the treatments differ for each, as IPF patients can use the two anti-fibrotic approved medications.
Sorry to hear of your decline Ron, have you done a course of pulmonary rehabilitation at your treatment facility yet? Would be worth talking to your pulmonary doctor if not, I found this helped me and it also gave me tools to use at home too so even when my rehab schedule was done, I could continue doing some work at home.
I hope the temperature and humidity this summer isn't bothersome for you. Wishing you well, and thanks for sharing your comments Ron.
Kind regards!
Charlene.
Chris
Hi Charlene, In my case, I have PF related to rheumatoid arthritis+gerd.
I’m lucky to have a treatment team at NAtional Jewish Health in Denver. My “team” includes Rheumatologist/Pulminologist/Gasterointerologist/Cardiologist and Sleep Apnea Dr. When I began, I was on 2 L oxy walking 4L exercize and Sleep.
First treatment was to get me on stronger digestive meds to eliminate Gerd, as I was breathing stomach acids into my lungs. (Also, to monitor inactive ulcerative colitis). Also, Change in meds to better control my RA. Both of these have helped my PF. Six minute walk, no longer need oxygen. As of yet, no specific treatment for PF. This demonstrates one case where IPF and PF are treated differently. Cardiologist is present to track heart. Research suggests that I’m six times more likely to have heart attack because of combination of so many diseases/conditions.
Best Regards, Chris
Charlene Marshall
Hi Chris,
Thank you so much for reading my columns and contributing to the comments. Sorry to hear of your PF diagnosis, secondary to RA and Gerd. I've heard of others having this as well, what a frustrating this to experience.
I've heard a lot of good things about National Jewish Health in Denver actually, and it sounds like a really comprehensive team caring for you, which is really good to hear. Do you have your PFTs there as well?
Did they say PF was specifically caused by the Gerd? Hopefully the progression or symptoms of PF will subside a bit too once the Gerd settles even a little bit. Glad the options your team has suggested so far seems to help with the PF, and excellent that you no longer need oxygen!
Take care Chris, and thank you again for sharing.
Warm regards,
Charlene.
Debbie
My husband has IPF and we were told by the doctor that IPF is different from PF, IPF means that it runs in the family. He had two brothers that has already passed from IPF
Charlene Marshall
Hi Debbie,
Thanks for reading my columns and for reaching out via the comments. Sorry to hear of your husbands IPF diagnosis!
While I'm certainly not a doctor, and wouldn't want to encourage anyone to disregard what their doctor says but I'd be seeking out a second opinion from him (or someone else) to provide additional clarification. The "I" in IPF actually stands for idiopathic, which means the doctors aren't necessarily sure of the origin or why your husband was diagnosed with it. It could run in the family still without any known cause or reason, but IPF isn't automatically assumed / diagnosed familial or meaning it runs in the family. Sorry to hear about his brothers passing, that must be devastating to both of you. It may be good just to see if you can get some clarity around this a bit more. Not sure if this helps, but feel free to reach out anytime!
Take care,
Charlene.
Pam
I have PF and the humid hot weather in maryland is painful for this condition. I limit my outings to early am and after 700pm. It does help. Since I live alone and ( with my pup) I have adjusted to finding creative ways to spend the time indoors. Otherwise, I would go nuts. Also take yoga was a week...thats,a blessing. Hope this helps.
Charlene Marshall
Hi Pam,
Thanks for reading my columns and reaching out via the comments. Yes, the humid, hot weather can really take a toll on our lung condition can't it? The Ontario summer is bad for high heat as well and I have to make modifications/adjustments to my day as well as someone who suffers with IPF. Glad you've found creative things to go indoors, that is important. Good for you for taking yoga as well, I've heard great things about the benefit of yoga for patients with PF. Hang in there and hoping the warm summer days become a bit easier for you!
Regards,
Charlene.
George Davies
Had diagnosis 17/02 of scirrosis and C.O.P.D, which was not a shock, but then tells me out of the blue I have Pulmonary Fibrosis, no details no prognosis just about appointments that I am still waiting for, not a happy bunny.
Charlene Marshall
Hi George,
I'm sorry to hear of your diagnosis - be gentle with yourself during this time, I remember being newly diagnosed and it is tough. I hope your appointments come up soon, the waiting is hard. Rely on others who understand and trust in a few close friends/family members to express your thoughts with, it helps. Feel free to write anytime!
Charlene.
Gary
Thanks for creating this site. I had COPD for some time but that was changed to IPF about a year ago. I am 80 and do struggle with extremes in temperatures. My biggest problem how ever is my wife. She does not seem to apprehend how debilitating this disease can be. How do explain it. I took her with me an a Drs visit. TDNW. after 60 years I hope for more compassion but it is fleeting at best.
I feel I have no lung capacity at all except for breathing and moderate walking.
Charlene Marshall
Hi Gary,
Thanks so much for reading my columns and reaching out via the comments. Sorry to hear of your struggles with lung disease, from COPD to IPF. Like you, I struggle with extreme temperatures also, this is a popular topic of discussion in our forums. Regarding your wife, I'm so sorry to hear that she doesn't comprehend the severity of this disease. Could it be some denial, do you think? It might be helpful to attend a support group together, if there is one near you. You can get support as a patient, and her as a caregiver. I can't imagine how tough that might be, but would she go to a support group with you?
I hope you continue to do as well as possible Gary, feel free to write anytime.
Sincerely,
Charlene.
Joan Swan
I live in Australia and can relate to the others regarding the humidity and heat of summer, living on the coast. So a few years back due to my condition of pulmonary fibrosis we decided to move to a higher elevation and cooler climate . I have escaped the coastal humidity but summers heat anywhere can be very hot, so now i try to advoid going out during this time.
Charlene Marshall
Hi Joan,
Thanks so much for reading my columns and reaching out via the comments. I love your country (have visited several times) but I know it certainly gets hot and humid! Makes sense to try and avoid going out, especially during the peak hours of sun... that is what other patients have told me is helpful when they struggle with heat/humidity. Take care and glad you're in a cooler climate.
Cheers,
Char.
Christine McCann
My understanding is that IPF is cause unknown and PF is from a specific cause, I have IPF and no one else in my family has had it. I is for Idiopathic meaning spontaneous /without cause.
Timothy W. Hinds
The “I” in IPF can also stand for interstitial PF. It’s the ore definitive for of PF. As in it has a known cause. In my case I was diagnosed with Interstitial PF caused by asbestos better know as Asbestosis. I hope this helps the understanding in very confusing condition with overlapping Acronyms. I was going nuts trying to understand one from the other.
Charlene Marshall
Hi Timothy,
Thanks for reading my column and reaching out via the comments. PF is actually one of over 200 interstitial lung diseases (ILDs) so the "I" in front of PF is usually indicative of idiopathic since it is always a type of ILD. Usually when the cause is known, it is just a diagnosis of PF. Hope that helps :)
Char.