How to Make the Most of Summer Despite Pulmonary Fibrosis

Charlene Marshall avatar

by Charlene Marshall |

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Following my idiopathic pulmonary fibrosis (IPF) diagnosis in 2016, I had many fears.

As an avid traveler, my No. 1 fear was being put on supplemental oxygen and losing the ability to fly. I also feared that using oxygen would prevent me from partaking in many of the outdoor physical activities I had once enjoyed.

As much as I hate to admit it, oxygen does limit some activities. However, with planning and proper usage, patients who rely on supplemental oxygen can still enjoy many different activities. This weekend, for example, I went kayaking with friends and stored my small D-size oxygen tank in the kayak compartment. With breaks, I was able to enjoy time on the water.

It’s hard to believe this is the second summer affected by COVID-19. As restrictions begin to ease in the U.S. and parts of the world, many outdoor activities are safely resuming, and I plan to take full advantage of them, despite living with IPF.

Without a doubt, my favorite season is summer, even though the heat and humidity worsen my breathing. I feel energized by the sun and longer days, and thoroughly enjoy watching the sun set over the lake at our family cottage. When my symptoms are well managed, I spend most of my days outdoors during the summer months.

Summer also brings a sense of ease in both my professional and personal life, which I look forward to throughout the year. Since a lot of my work is with schools and they break for the summer, referrals for support slow down, and everyone seems a little more lax. Additionally, most people I know are in a better mood with the nicer weather.

Since the summer months tend to fly by more quickly each year, I am intentionally choosing to enjoy as much of them as I can, despite IPF. Following are some of the ways you can enjoy outdoor activities while living with IPF or supplemental oxygen.

Plan ahead for time outdoors

Oftentimes, heat can trigger shortness of breath and cough in IPF patients, so it’s important to plan for time outdoors if it’s hot. I no longer go anywhere without my inhalers and take them proactively ahead of any physical activities during the warm summer months.

If I am spending long periods of time outdoors or in the sun, I often also use cooling blankets. These can be purchased online and are great for cooling down your body temperature quickly. I also use my oxygen as needed to ensure my body doesn’t get too tired while spending time outdoors in the summer. Click here for tips to keep your oxygen tank safe in the sun, and don’t forget your sunscreen.

Embrace a new hobby

Living with a life-threatening lung disease like IPF can be hard to accept and often wreaks havoc on our mental health. Summer is the perfect opportunity to look for new hobbies and do something different. This summer, I am embracing kayaking, even if I have to do it with oxygen.

Being on the water is so relaxing for me, and it does wonders for my mental health. Since kayaking is a relatively low-energy activity, I look forward to creatively storing my oxygen tank in the kayak and keeping up with my friends.

Additionally, don’t forget to eat all of the delicious summer foods that are best enjoyed throughout the upcoming months, like ice cream and fresh fruit. Get outdoors, maximize time with friends, and don’t let supplemental oxygen interfere with your ability to make the most of this beautiful season.

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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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Bernie Pack avatar

Bernie Pack

Has anyone heard anything about the Bristol-Meyers IPF trial drug?

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Charlene Marshall avatar

Charlene Marshall

Hi Bernie,

Thanks so much for reading my columns and reaching out via the comments. I haven't heard of this trial drug, but a really good site to better understand any clinical trials associated with IPF is: clinicaltrials.gov -- you can filter by disease and maybe even by drug name. Goodluck!

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Sherrill Ryan avatar

Sherrill Ryan

Charlene. Curious as to what inhaler you are using. I am not on oxygen as yet but will be soon forthcoming.

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Charlene Marshall avatar

Charlene Marshall

Hi Sherrill,

Thanks for reading my columns and reaching out via the comments. I am on two steroid inhalers I take daily - two puffs 2x day and then the ventolin as needed, which I feel as though I'm needing more lately. I don't know enough about inhaler use for IPF/PF patients, so what each of us are on can be very varied and is important to review with our doctors. I do know a lot of patients using inhalers, but which ones they are seem very different. Can you chat with your doctors about your inhaler use and if it would be helpful to go on one, Sherrill?
Take care,
Char.

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David m Smith avatar

David m Smith

Hi Charlene

I just read your, make the most of summer column, and it made me smile, I was diagnosed in 2015 with IPF and it hit me hard, thinking that’s it for me and feeling sorry for myself, it took a little bit to snap out if it and fight back, I have the love of summer and the out doors also, being in michigan and on the water like you mentioned is breath of fresh air, mentally and physically, I’m on my fifth year going on six with IPF, activity is the key to keeping this disease in check, keep active mind and body

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Charlene Marshall avatar

Charlene Marshall

Hi David,

Thank you so much for reading my columns and reaching out via the comments. I'm glad my words could make you smile! I'm so glad to hear you've been able to fight back, albeit I agree, it is hard not to feel sorry for ourselves and worry that the disease will consume us. Michigan is a beautiful state to be in during the summer months, so wonderful you can enjoy it. Activity is very important I agree, and keeping the body and mind active and practicing gratitude is important. Kudos to you! Thank you for writing :)
Char.

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Steve Dragoo avatar

Steve Dragoo

Hi Charlene,

Thanks for the encouraging and determined article. It inspires me to get up and go. We get our 2nd covid vaccine July 28 and I look forward to being unbridled. Yes, quality beats quantity every time - unless it's money... Steve

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Charlene Marshall avatar

Charlene Marshall

Hi Steve,

As always, so wonderful to hear from you - thanks for writing! I appreciate your kind words, and glad to hear the article inspires a bit ;) Yahoo re: second vaccines, that is exciting. Stay safe until then and keep in touch. I hope you're doing as well as possible my friend, I think of you often.
Char.

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Cindy avatar

Cindy

New diagnosis bronch scope Monday. Heat and humidity totally drain me

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Charlene Marshall avatar

Charlene Marshall

Hi Cindy,
I hope the bronchoscope went well and wasn't too difficult. Heat and humidity is so hard to manage as an IPF patient, I agree! Hang in there.
Char.

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jimnox avatar

jimnox

Hi Charlene,
Thanks for that great, uplifting and hopeful article. If diagnosed in 2016 , you now have a better than average survival and quality of life than might otherwise be predicted. I am wondering if your history includes taking OFEV or ESBREIT, the only two approved drugs for IPF, and which drug and for how long. I think I recall some of your earlier articles talking about side effects.

I live on a ranch in central Texas, and here, as well as my earlier urban professional life, I have also been an avid outdoor person especially here where there are ranch chores to do.. I guess I pushed it a little too far as my IPF has now morphed into PH, a more serious problem, probably caused by my "too stingy" use of the O2 concentrator, which I now use nearly continuously and liberally along with my pulse oximeter. Sounds like you use your 02 intermittently - - pretty darn good after diagnosis 5 years ago.

I was diagnosed in 2018, two years after you, yet you seem to be far less disabled, overall. So I am wondering if you can share a little more detail about your methods of successfully dealing with this disease. It might help me and others. I also think my hard headed tendency to overdo activities without o2 may have hastened my decline and wonder if maybe your different approach to living with it, might enlighten many of us "hard heads". I am beginnning to think that succesfully dealing with the disease is as much behavorial and attititudes as it is in medicines.
Best regards,
jimnox

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Warren avatar

Warren

Thank you for your post. I was diagnosed about 2 years ago. Summer is also my favorite time. I just returned home from a trip to the Maldives. I learned quite a bit about traveling with IPF. My pulmonologist thought I would be ok but the air travel was bad every time I got up for a walk on the plane Also while there we stayed on an over the water room and the long walk become harder each day. High temps and high humidity. I did manage to snorkel a little. A few minutes at a time. I’m not giving up but looking for closer places. I have been home for a day now and the recovery is hard. I am still short of breath much quicker

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Charlene Marshall avatar

Charlene Marshall

Hi Warren,

Thank you so much for reading my column and reaching out via the comments. I am so JEALOUS - the Maldives is top of my bucket list. It sounds like the heat and humidity might have been tough on your lungs? Glad you were able to snorkel a bit, I bet the water was beautiful. Did you notice a difference at all in your breathing in salt water? Sometimes I think I do by the ocean, or it is just psychological because the ocean is my favourite place to be. I hope you are able to rebound a bit with your recovery from the trip. Thanks for sharing with us!
Char.

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Ping avatar

Ping

Hi Bernie,

According to clinical trials.gov, the trial is still recruiting. The study won’t be completed until end of 2023. More information about the trial can be found on clinical trials.gov: https://clinicaltrials.gov/ct2/show/NCT04308681

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