Traveling With CF: Plan Ahead, Be Flexible, and Accept Help

By Ella Balasa

Looking up at the rising wall of stone, sweat droplets beading on my forehead, I think about the hundreds of steps between me and the top of the walls of the city of Dubrovnik, Croatia. I want to see the view from the top, but I feel the discomfort of what-ifs welling inside me … what if I hold up the line going up the stairs because I need breaks? What if I pass out from shortness of breath? What if my lung collapses again from taking such heavy breaths with only 25 percent FEV1?

Those were my thoughts last August during my European adventure.

The first six months of 2017 had been difficult. I had three surgeries — each two months apart — on my lung because of a reoccurring lung collapse. I spent weeks in the hospital and then weeks recovering at home. I went from barely walking around my house to building up the strength to walk on the treadmill for 30 minutes a day, only to restart the process each time after the next two surgeries. There were moments I never thought I would get stronger, that I’d be confined to my house with 24/7 supplemental oxygen, chained to an oxygen concentrator that allowed me to breathe.

Slowly I got stronger and — after the third surgery — the lung held. I had been planning this trip since before my medical issues began, and I wanted to make it a reality. I already had to cancel a trip to Vegas for my 25th birthday and a Fourth of July get-together with my best friends. I would be heartbroken if I had to add this trip to that list.

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In the days leading up to my trip, the fear of another lung collapse (pneumothorax) still terrified me. A pneumothorax occurs when air is trapped between your chest wall and your lung. This trapped air pushes on the lung, allowing less room for the lung itself in the chest cavity, thereby collapsing it.

When there is a decrease in air pressure at higher altitudes, air molecules expand, occupying more space. Because of my history of lung collapses, there was a chance that I might have a slight air pocket between my lung and chest wall. If so, the altitude change in an airplane could have expanded this air pocket, making the collapse much larger and dangerous.

Some might think it’s too risky to travel outside the country if you have a chronic illness, where the possibility of needing medical attention is high, and the constant awareness of symptoms and management of medications and treatments are a necessity.

There certainly are times when the risks outweigh the benefits. In my situation, there will always be a risk, but the level of potential pleasure to be gained makes an attempt worthwhile.

Planning for the Trip

Being prepared was important and eliminated some of the anxiety associated with travel. It was also necessary to relax about the parts that were not in my control.

I made sure I had my flight insured and bought travel insurance, and I carried the documents with me. I counted and packed the amount of medications I would need, plus extra.

I did not worry about packing light. I require the amount of luggage of a family of four. In the past, this has embarrassed me. We all stereotype women and their extra bags, but I need: A rolling luggage bag for my vest, a roller for my oxygen concentrator, my suitcase of clothes and personal products, and a carry-on backpack of medications. I do not check any of my nebulizing medications and machine, inhalers, enzymes, and antibiotics in case my suitcase gets lost. These are the items I have to have, and it would be a nightmare tracking them down in a foreign country.

I opted for special services through the airline for assistance with getting from one gate to the next between flights and to help carry heavy bags. Having 25 percent lung function, it’s tiresome to walk distances, and it’s not possible for me to carry anything remotely heavy. This was the first time I had used this service. I’ve never liked being seen as different or needing special accommodations. However, I have realized, as my disease progresses, that doing everything everyone else does is not always possible, and it’s OK.

And, it turned out to be a wise decision. As I got off one of my flights, I was met by an airline employee with a wheelchair and a sign with my name. I had 20 minutes before my next flight was to depart JFK airport in New York, and my gate was at the other end of the terminal. With only 10 minutes to go, this gentleman started running as he wheeled me through the airport. By the time we got to the gate, he was profusely sweating. I was the last one to board! I would have missed my flight without this assistance.

What I Learned

First, I learned to be comfortable with strangers seeing me doing CF-related stuff, like wearing a mask and using an oxygen concentrator on an airplane, and doing a breathing treatment on a park bench, while coughing and spitting into tissues. Here is a picture of me doing exactly that in Split, Croatia.

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Jerry Unplugged: Bouncin’ Back

Well, here I sit, staring at four walls, unable to ride my bike, work out, coach, or run. I’m stuck here in my apartment for the next two weeks as I recover from a partial knee replacement. This lifestyle is not me at all. I’m frustrated, and it would be easy to get discouraged, but I can’t afford to.
I’ve just listed some of the many things I can’t do, but I’m focusing on what I can and must do in order to live the way I want to live. I must stay focused on the positive and on my recovery. It’s the only way to bounce back to my version of normal.

Continue reading Jerry Unplugged: Bouncin’ Back

How One Conversation Led Me to Being More Intentional About My Life

By: Ella Balasa

Would I ever live long enough to fall in love? Would I be able to graduate college? Would I be remembered for making some kind of impact on the world before I was gone? Would I get to travel to destinations where the breaking waves crashed against a rocky shore and the sea mist sprayed as I breathed deeply, and beside me stood …

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I’m startled back to reality. I sit in a hospital bed, surrounded by my parents in chairs on either side of me. I’m on the lumpy foam mattress, where I sit cross legged and my butt sinks at least 4 inches straining my back and adding to the pain the past few weeks — and this conversation — have caused me. My dad sits, lips pursed as normal when he listens intently. We are all listening to my doctor talk about my declining health, about my recent episode of pneumonia, and what my future may hold.

“No one knows the future,” I think, as the doctor speaks. My mind jumps again to that ocean scene, only it isn’t me standing on the shore, I’m now observing the scene from above, as if in spirit. Observing a couple embrace and I feel a strange sense of sadness, anger, and jealousy.

“It’s time to consider a lung transplant.” Those words, uttered from my pediatric CF doctor 6 years ago, made me, in an instant, think about all the joys of life I hadn’t gotten to experience yet.

Why me? That’s the first thought many people have when they can’t accept the reality of what’s happening. We try to answer unanswerable questions.

Later that summer, my parents and I followed doctors’ advice and scheduled a week-long transplant evaluation. A week of what I still consider to be grueling medical tests, even compared to other lung complications I have developed since. In the end, the transplant evaluators concluded I was not quite in the transplant window at the time. That fall, my health started to stabilize. I started my second year of college and I felt myself withdraw from the world.

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TEDx talk: The Case for Realistic Optimism

The Case for Realistic Optimism

Have you ever struggled to stay positive when dealing with a sick loved one? When Ray’s wife Rebecca went into respiratory failure from end stage cystic fibrosis he was faced with this challenge. What he learned was that choosing to be realistically optimistic helped him to remain strong for Rebecca during Continue reading TEDx talk: The Case for Realistic Optimism

Introducing Jerry Unplugged!

We are thrilled to announce that Jerry Cahill has launched, Jerry Unplugged, a new blog segment on his site.  Jerry is a Delta F508 and R117H #CF patient who is post double-lung transplant by 6 years this April! Not only is Jerry an advocate for #CFAwareness, but he is a coach, athlete, and friend! Join him on his journey as he shares his insights, experiences, and explains why he cannot fail❗
Stay tuned for much more of #JerryUnplugged!

Read the first blog here: http://www.jerrycahill.com/who-am-i/

Continue reading Introducing Jerry Unplugged!

Introducing ‘This Lung Life,’ a Column by Ella Balasa

Below is the first post of an original column that will be published once monthly. Enjoy!

Fulfillment to me means achieving a dream, pursuing a passion, striving to be happy every day, and finding joy in what I do. To say I did my best and made every moment count. I believe having those dreams and feelings of fulfillment comes from motivation. Motivation to do and be better in whatever parameters I set for myself. My motivation for life comes in the most innate form — the will to live. To live the fullest life I can, in the time I am given to live it.

Having cystic fibrosis has shaped me to want to live in this way. My motivation to Introducing ‘This Lung Life,’ a Column by Ella Balasahave this attitude has grown with each passing year, though it’s taken time to gain the maturity, experiences, and confidence to find my identity and purpose.
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CYSTIC FIBROSIS WIND SPRINT 66: CIRCUIT TRAINING 1

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF. Continue reading CYSTIC FIBROSIS WIND SPRINT 66: CIRCUIT TRAINING 1

Only I Can Look Into My Mirror

Guest Blog By: Brennen Reeves

If I were to count all of the scars on my body, the ones visible to a bystander at the beach, I’d need your fingers and toes, plus mine. And someone to mark the tallies. Thirty-eight. I’ve counted. From my chest, to my stomach, up to my neck, and down to my ankles the grooves are endless it seems. I don’t think I have any on my back but then again I cannot see my back and I still have trouble with sensation from the bilateral lung transplant I received in 2011, so I wouldn’t be able to feel them either. Continue reading Only I Can Look Into My Mirror

A Tribute to Everyone with Cystic Fibrosis

Dear CF Roundtable Blog readers,

I would like to share a drawing that I recently created. Occasionally, in my spare time, between four treatments a day, working, cooking food, attempting exercise, and the intermittent phone call or meet up with friends, I hone my artistic skills. In all honesty, it is maybe every few months, but when I do create something, it brings me much pleasure. Cystic fibrosis, the greatest blessing and the greatest curse in my life, obviously affects me daily yet provides the most inspiration.

Continue reading A Tribute to Everyone with Cystic Fibrosis