Adapting and Moving Through Tough Days

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by Christie |

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In March 2019, my mom, Holly, got a second chance at life. Her bilateral lung transplant was a gift of the highest order. It saved and prolonged her life when nothing else would. It gave her body back the power to enjoy living. It restored her health and independence.

One short year later, she was outside the University of California, San Francisco, about to check in for her one-year post-transplant appointments, when she got a call from her doctor to go home and stay there.

In an instant, the COVID-19 pandemic took away so much of the freedom and independence she had regained when she got new lungs. The cost of receiving a lung transplant was that she would live out her days with a compromised immune system. Even before COVID-19, this was a big cost to consider. She made a promise to her doctors and her donor to protect her gift and accept the challenge of an immunosuppressed life.

In this new world, the virus has taken away or altered much of what made life enjoyable — for all of us, but especially for people like my mom. But we all know that story. We have all lived through our own losses and suffered our own grievances in the last year and a half. I won’t attempt to tally them up to make a point.

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Despite all the unpleasantness of a pandemic raging around my mom’s vulnerable life, she has found ways to divert her attention from the heartache. Something that has helped her mental health, as well as her physical health, has been exercise.

Walking has always been an accessible and important part of her recovery. Even before the acute exacerbation that left her hospitalized, my mom participated in pulmonary rehabilitation. When she was in the ICU for three months, daily walks were crucial to her survival. Her distance increased from six steps to six laps up and down the hall by the time she had a match for new lungs.

In the months after her discharge from the hospital, we walked together down blocks of San Francisco, and in Golden Gate Park. At last, when she was allowed to return home to the mountains, she and my dad took to walking the old routes in their neighborhood. The mile-long walk around the local pond was insurmountable when my mom’s IPF got bad. Thanks to her new lungs, she can again complete the loop with ease.

To keep things interesting, my parents decided to mix up their exercise routine. Last summer, their community pool offered lap swimming by appointment. This was a perfect, low-impact change of pace, as my dad developed a painful autoimmune condition called polymyalgia rheumatica. They swam throughout the summer, but the season for outdoor swimming is short at high elevations.

In the winter, they normally would have been on the slopes or hitting the trail with snowshoes to maintain their fitness. Standing in lift lines and cramming into gondolas with strangers didn’t seem like the safest way to spend the day during a pandemic, so they hunkered down at home.

When the world thawed out this spring, my parents decided to purchase e-bikes. They were antsy from the winter and getting bored of walking the same old routes. And as vaccines reduced case numbers, the pool returned to its former schedule — all kids, all day. Even before the pandemic, places like this were on the no-go list for my mom. No cooties, please.

The price tag on the bikes was high, but they have found the investment to be worthwhile. Their new bikes allow them to travel steep hills with relatively low exertion. This keeps the force low on painful joints, old injuries, and battle-fatigued cardiac systems. The electric-assist doesn’t work unless the pedals are moving, so even if they are getting a boost from the motor, they have to keep their legs in motion.

Both of my parents have loved getting back on two wheels. My mom said it feels like being a kid again to be able to take off on a bike and leave home in the dust. Pedaling for hours all over town feels new and exciting after years of being unable to ride. Knowing that the bike will help her get back up the hill to home at the end of her ride takes away the fear that she might get stranded somewhere by fatigue or joint pain.

E-bikes are an adaptation that allows my parents to do something they enjoy again. Adapting to change is what humans are best at, I think. When things get hard, whether it’s inside your body or all over the world, we adapt because we must!

***

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

Ron avatar

Ron

Christie thank you for sharing your story about your Mom. It was inspiring.

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Christie avatar

Christie

Thanks for reading and commenting, Ron!

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Deborah avatar

Deborah

I really enjoyed reading about your Mom's IPF journey to her new lungs and new life! Many thanks for sharing it was truly uplifting.

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Christie avatar

Christie

Thanks for reading Deborah! She's doing great :)

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Allan Byron avatar

Allan Byron

Pls give me the site where I can read your column/ comments on your mom’s bilateral transplant. I am also a IPF patient, thanks

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Christie avatar

Christie

You can find my column archive here:
https://pulmonaryfibrosisnews.com/courage-to-care-christie-patient/
thanks for reading!

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Suzanne avatar

Suzanne

Just got my electric assist trike yesterday. I got that rather than an e-bike as I had a total knee replacement some years back and I have a (healthy, I think) fear of falling and injuring that knee. Plus, I have IPF and the trike has a basket on the back so I can put my oxygen tank in it when I ride.

I do my best to stay physically active so that if/when I am eligible for a transplant, I am strong and fit enough to qualify and take advantage of it.

My husband got his e-bike a while back and we are looking forward to being together as we tool around the neighborhood.

I have read your columns about your Mom and her journey and am glad she’s able to get out and enjoy her new status!

Can’t wait for my first ride today!

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Christie avatar

Christie

Oh that's awesome Suzanne! Thank you for sharing, and for reading my column :) I am excited for you to get out on your e-trike (so cool!) with your husband. It will be such a blast!

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R. Chris LaReau avatar

R. Chris LaReau

Now 70, I found I have IPF almost three years ago now. I was simply wondering, how old is your mother?

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Christie avatar

Christie

She was 69 when she had her lung transplant, and is 71 now.

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Robert Weimer avatar

Robert Weimer

I’ve had IPF for 8 yrs I tried Esbriet couldn’t handle it got very sick,then went to
OFEV that worked for five weeks, stopped ,and went to 1 pill a day because it caused me to have a stroke.Now I just take oxygen 24/7 started on 2 liters now on 3 liters doing pretty well turned 90 yrs old in May,I can no longer use the pulse concentrator because my nose dries up.I now have a wheel chair with a bag on the back with 2 E tanks of oxygen I go to my clubhouse in adult village

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Christie avatar

Christie

Hi Robert, sorry to hear you've had trouble with OFEV. Have you used our forums at all? If not, you might enjoy meeting others online with similar stories to yours and getting support there. Check out www.pulmonaryfibrosisnews.com/forums PS. happy belated 90th birthday! Big milestone!

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