This Lung Life By Ella Balasa
I hear others say “I have CF. CF doesn’t have me.” This may be an accurate statement for some, the small percentage of patients who are not limited by this disease. Those who climb mountain peaks, work 60 hours a week, and raise three children. They could say this statement is true. They conquer everything, despite CF.
I am not one of these patients. I am optimistic, though. I’m optimistic that one day I will sprint faster than you (with transplanted lungs). I’m optimistic that I will leave this world having made some kind of impact on those around me, and maybe others that I am unaware of. But with this DNA in the cells of my lungs, I can’t do it all.
I’ve had significant events and minute moments in my life that have been affected by CF, although it’s not always apparent to the world around me. However, I don’t claim that CF has altered my life for the worst. Instead, I show the reality.
CF had me most recently when I was planning to go to the Cystic Fibrosis Research Inc.’s Family Education Conference. Being a director for the U.S. Adult Cystic Fibrosis Association, I wanted to connect with fellow CF directors and hear about the amazing new research the CF community is eager to benefit from. Unfortunately, due to CF infection guidelines and the bacteria I harbor in my lungs, I posed a risk to other CF patients, so I was restricted from attending.
Recently, as my form of exercise, I have been playing tennis. CF has me when it grasps my airways after just a few serves. I feel my lungs expanding but not getting enough air, exhausted from a previous sprint of just a few feet. I watch as the ball spins toward the far corner of the court. In my mind, my legs are in the air moving toward it, but in reality, they have just elevated the sole of my foot for the first step. The muscles are depleted of oxygen, waiting for the next burst for them to spring into action, but it never comes. Instead, they continue straining with what little reserve they have, for one-quarter of their potential. The quarter that comes from the lungs that function at one-quarter of what they should.
CF dictated the direction my life would take when upon graduation I was offered my dream job, but I didn’t take that career path. Spending four hours a day on breathing treatments, attending frequent doctor’s appointments, having occasional hospital stays and health insurance factors, as well as maintaining a social life and community involvement weren’t conducive to a full-time working schedule. Choosing not to advance in my career as my peers did made me feel left behind. Instead, keeping my health as the focus, I chose part-time employment.
CF has me when I have an exacerbation and lots of congestion in my lungs. On occasion during these times, I’ve taken the flight of stairs from the basement out into the sunshine after work. After a few steps outside, I feel the absence of air in my lungs. I gasp and then panic. Continue the article here.
By Hannah Buck
Being in a committed, loving, long-term relationship is a distinctly intimate experience. It is the most intimate experience of humanhood many would argue. To see a person walking by and say to them, “Hey, you’re fairly OK-looking. Would you like to hold hands for forever and accrue debt until we die?” is to truly know companionship. That, and watching each other poop.
Chronic illness makes dating a thoroughly more vulnerable experience, and not just for the patient. You see, sickness affects everyone involved. It accelerates everything. Sickness makes daily life complicated (e.g. planning dates that aren’t physically taxing or one partner relying more on the other for help with everyday chores) and the future even less promising than it usually is. When you or your partner has a condition like cystic fibrosis, the bleak reality of your situation is sorely evident. It’s inescapable. One of you will die much sooner than the other. And with that intense reality flashing its lights 24/7, it can be tempting to hold things in.
I don’t speak for all people with CF in writing the following list — but by sharing what I’ve withheld in past romantic relationships, I hope to make you laugh, open your eyes, and help you become a better partner to the person whose hand you like to hold. Enjoy.
Things your partner with CF probably isn’t telling you
1. They’ve been wetting your bed for a while.
Have you ever rolled over in the middle of the night to feel a damp spot on the mattress? Has your girlfriend been known to spontaneously wash your sheets and comforter out of the goodness of her heart? Yeah, sorry to break it to you, it’s not because she’s an angel. It’s because she has coughing-induced, premature incontinence, and she doesn’t want you to know.
2. Their antibiotics give them diarrhea.
It just happens, OK! We don’t ask for this! Antibiotics have one mission: to kill. This includes good gut bacteria, which unfortunately messes up our tummies. Make your partner’s day by surprising them with a bottle of probiotic-rich kombucha to get things back on track.
3. They’d prefer if you looked away during their cough attacks.
Coughing ain’t cute. Yes, yes, I know you love them, but try to put yourself in your partner’s shoes. If you were red in the face, foaming at the mouth, hunched over like the Notre Dame character, and spewing phlegm like a swampy sprinkler, would you want the love of your life to gaze longingly upon you? Probably not. Give ’em space.
4. They wish you visited them in the hospital more.
They just feel too guilty to say it out loud. It is unspeakably lonely to sit in a small room and face the same wall every day. Please, even if they insist they’re fine, be there for them. Stop by. Make the time. If you can’t do that, text, call, or video chat. While 24 hours pass by in a snap in the outside world, in the hospital, the hours drag like you wouldn’t believe.
5. It makes them really happy when you randomly flex your CF knowledge.
Showing your partner that you care about them enough to not only learn about their disease but about how it’s treated is an instant way to grow closer. For many of us, the only people we have to confide in about this part of our lives is our medical team, our family, and occasionally other CFers (but only online). Take the time to learn what’s what — get the medication names right, make yourself an ally, and demonstrate that the two of you are teammates in this fight.
6. Explaining what’s “wrong” with them to other people makes their life so much easier.
With this one, I want to repeat my disclaimer: I am speaking for myself, and every person with CF is different. Please talk to your partner before taking this advice.
With that said, I have always found it to be an incredible relief when my partner discreetly says, “She has something called CF, so she coughs a lot. It’s normal. So anyway … ” and then changes the subject when I have a cough attack around people who don’t know me. Explaining myself is something I’ve had to do my entire life, so having someone else do it for me is a treat I savor every time.
7. They don’t feel worthy of your love, and they feel guilty about loving you.
I hope this one isn’t true for you guys. In my case, it is, and I suspect it’ll be a lifelong battle. Having an incurable illness is a heavy burden to bear, but when you’re born with it, there’s no other option. Putting it on another person, though, that’s different. That isoptional. And it can feel impossible to justify exposing the person whose hand you like holding to that level of lifelong pain.
What do you get when Broadway’s biggest stars, such as Javier Muñoz and Gideon Glick, come together in the recording studio? One heck of a song. And one heck of a message.
Joined by Broadway veterans Laura Osnes, Christy Altomare and actress Sarah Levy, Muñoz and Glick have banded together for a new campaign — called the “Anyway” campaign — for an original song to help raise money for Emily’s Entourage.
At the center of the Entourage is Emily Kramer-Golinkoff: a 33-year-old daughter, sister and granddaughter who was diagnosed with Cystic Fibrosis when she was just a few weeks old. Her parents, Liza and Michael, have done everything in their power to raise Emily as if she was a normal child.
As the fatal disease only affects 70,000 people worldwide, funding for a cure is limited. Emily and her family are even more restrained by her specific mutation, which means medical funding is even rarer. And with a life expectancy of only 35-37 years for her kind of CF, time’s ticking.
Six years after the Kramer-Golinkoffs decided to take matters into their own hands, they’ve raised $3 million to drive high-impact research and speed up breakthroughs to research not only Emily’s mutation, but many other diseases including muscular dystrophy, inherited blood disorders and certain cancers.
They’ve also built a network of family, friends, and strangers from around the world, all of whom have been welcomed into the Entourage. Each Entourage member has been more inspired by Emily’s story than the next.
Take Elizabeth Phillipson-Weiner, from Emily’s hometown of Philadelphia, Pennsylvania and composer of “Anyway.” She took a simple journal entry from a songwriting retreat, turning lyrics like “when the going gets tough I ask questions” into a prolific melody.
Elizabeth explained to AOL Lifestyle. “The song wasn’t just cathartic for me, but could actually ring true for a lot of other people. I immediately thought of Emily.” Working with co-writers, producers and engineers, that melody was soon turned into a demo.
But as inspired as Elizabeth was by Emily’s story, the Entourage required “star power” to bring this project alive.
“I cold contacted agents and managers, I asked friends and friends of friends and friends of friends of friends,” said Elizabeth. “We did hear ‘no’ quite a bit, but whenever I became discouraged or frustrated I thought about who and what I was doing this for.”
By Wendy Caroline
As I sat down to write my column for this week, a massive wave of writer’s block hit me. This has been plaguing me for a while. Great timing, right?!
I started five different column pieces, each of which I would get a solid start on, and then nothing. I stopped understanding where the piece was going and didn’t like any of the words that I was writing. A few years ago, I started developing chronic fatigue. It started slowly, then quickly snowballed. In the past year, it has developed into brain fog. Very frustrating. I love using my brain for writing, reading, problem-solving, and critical thinking. It increasingly feels like cystic fibrosis is taking all these parts of my personality away from me. So here I am today, compiling a list of some tips and tricks that I use to combat brain fog and feel a little more like myself.
1. Don’t force it.
I can’t tell you how many times I have blocked my own brain by trying to force my way through brain fog. “Just do it.” How many times have we heard that? Unfortunately, at least for me, if I “just do it” and try to force myself to work through the brain fog, it just puts up more blocks. Then I get frustrated, and all I can think about is how I can’t think. It just spirals from there.
Cool, so how do you get past brain fog and still make your deadlines (because if you’re forcing it, that’s often why)? Be ahead of the game. I am guilty of this not being a natural instinct. In fact, I’m still learning how to do this. I used to be a procrastinator. I would thrive under the stress. My brain fog does not. Now I start writing and drafting at least a week before.
2. Get inspired.
One of the best ways to get inspired is to look to others. CF News Today columnist Brad Dell’s latest piece about brain fog directly inspired this post. It got me thinking about my own experience with brain fog, and how I have been insanely frustrated by its hold on my life. Find a piece of other people’s lives or the world around you that makes you think about your own. Capture it and go. I find that making a note of these inspirations in a note-taking app on my phone really helps because brain fog causes forgetfulness.
2. Create the mood.
Ditch the phone and whatever other fancy gizmos that cause a distraction. Find the type of environment that makes you feel inspired and ready to work. For me, that’s open space with lots of natural light and structured seating.
Next, put on some music — music that is going to make you focus and productive. My go-to is this Classical Essentials playlist on shuffle. This helps me drown out enough thoughts that I won’t get distracted without drowning out the thoughts that I need to work. Whatever you listen to, just make sure it doesn’t have words.
It’s also important to get your brain in the right mood. My brain fixates on chores and tasks that need doing, so I always make sure to get those done before I sit down to write. Also yoga and meditation, that’s some great stuff.
4. Let it flow.
A friend of mine gave me this very useful tip. Just let the words flow out of you, even if you don’t like them. When I use this technique, I have to write everything my heart desires and then walk away. Don’t reread it right then. You will get frustrated. Instead, write all you can and come back to it after you’ve had a solid break. For me, this is usually the next day. Your rough work can have a really good base but just needs to be re-worked.
I know that these tips and tricks are focused on writing, but I use the general ideas in all aspects of my life. Whether it is work, family, friends, or hobbies, brain fog can affect every aspect of your life. It’s one of the reasons that I haven’t been very active on any of my social media platforms — Instagram, YouTube, Facebook, and even my blog. As my brain fog developed into almost a daily issue, I took a step back and prioritized what I needed to focus on first. I truly believe that as these steps of beating brain fog become a habit, I will be able to handle more. Hopefully, you’ll see me around the internet again real soon.
» Find me on the internet at The Living, Breathing Wendy «
This article was originally published on CF News Today.
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.
Cystic fibrosis is a devastating disease. About 30,000 children and adults have cystic fibrosis (CF) in The United States. While the life expectancy for someone with CF has doubled in the last 30 years, children and adults people still lose their lives to this disease every day. There is no cure yet. It’s time to find it.
How can you help? Use your voice and get involved! Participate in Great Strides walks and other events supporting CF and share the facts on social media and in your community. The Cystic Fibrosis Foundation is working hard to find a cure. Other foundations and organizations help the CF community as well. Like the CF Roundtable which supports adults with CF, there is a foundation that supports children and families living with CF: Claire’s Place Foundation.
Claire’s Place Foundation, founded by Claire Wineland, when she was just 14 years old, is a 501c3 non-profit organization designed to help children and families affected by cystic fibrosis. Claire was born with CF. In her short life, Claire has undergone more than 20 surgeries and has spent months at a time in the hospital. She survived months in a coma on mechanical ventilation despite the odds and was also a Make-a-Wish recipient. She has 40% of ideal lung function and the doctors have estimated two years left to live. This is not, however, what characterizes or defines her. Claire has dedicated her life work to making a difference in the lives of others living with CF.
Now 21 years old as an adult living with CF, Claire’s Place Foundation is a way for Claire to give back with hope, strength, and joy. She wants to live with intention and purpose. In her own words, “I know my life will be shorter so every day has meaning.” She strives to find new ways to help the CF community and other children afflicted with chronic illness. Claire’s Place is making a huge impact through its two programs – The Extended Hospital Stay Fund and the Family Support Program. These programs are in high demand and the foundation needs your donations to continue assisting young patients in need. You can meet Claire and support her foundation at her next fundraiser, “Glow Ride,” on August 18, 2018 in Hermosa Beach, CA.
To find others ways you can help bring awareness to CF find a local chapter near you.
Get involved. Donate. Come to events.
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.
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.
By Ella Balasa
During past birthdays, my parents, brother, and I celebrated with cakes filled with raspberry layers and chocolate frosting. The cake always had my name written across the top in big, pink, block letters, and the number of candles matched the number of years lived. I remember my dad’s voice quivering just slightly by the time he sang the last “Happy Birthday” lyric. I think that he sheds an extra tear of joy, metaphorically, for each year I get older. He’s happier than the year before, that I’m one year closer to living the long life he hopes and prays his little girl would have.
I know my parents have always had a seed of heartache that they’ve kept hidden far in the back of their thoughts, watered by the knowledge that they may outlive their youngest daughter. It’s a feeling unknown to me; I can only imagine the fear.
I realize that my disease continues to progress with each passing year, causing a gradual decline in the intensity of accomplishable physical activities. My birthday is somewhat of a grim reminder of what I’ve lost over time. It’s marked by at least one less thing I can do.
Toward the end of my high school years, my brother was my exercise coach. He was always encouraging (sometimes nagging) me to do frog hops down the driveway and sprints from the mailbox to the stop sign on the corner. I also was running about 1 mile, or half of one, in my neighborhood on the days I felt extra motivated. One early summer day, at the end of my loop, about half a block before I reached the stop sign on my corner, I felt the urge to cough. When I got to the corner, I started coughing globs of pure blood while bracing myself against the sign. It was one of the last times I ran. That was the year I turned 18.
When I turned 21, I stopped working out at a gym and instead got a treadmill and weights at home because I had started to require supplemental oxygen while exercising. Without the extra oxygen, my blood oxygenation levels would dip into a range that could cause damage to my heart. My lungs began failing at the job they are required to do: supply oxygen from the air into my blood vessels and to the rest of my organs.
I was using a nasal cannula and carrying around a machine that puffed loudly with every breath, but I couldn’t allow people to see me as abnormal. I still have a hard time being in public with the supplemental oxygen, and although I don’t yet require using it constantly, it’s caused my illness to become visible rather than invisible, as it typically was — and I struggle with that.
Last year, when I was 25, I learned what it feels like to do a 500-pound deadlift. Except I wasn’t in a competition. I was bringing just two bags of groceries into my house from my car less than 50 feet away. During infection exacerbations in my lungs, I am unable to walk at a normal pace, much less carry anything, due to my airways feeling like they are the diameter of a toothpick, and the lack of oxygen my body is receiving. During these times, I feel my body needing the extra oxygen that I sometimes deprive it of because of my unwillingness to show the signs of my disease.
Based on this column thus far, it might seem as though I lament on the difficulties. Honestly, I don’t notice much when my breathing becomes less limited. It’s easier to notice when my breath is restricted and I feel my body producing less, functioning less.
Despite these reflections on my inabilities, I don’t remember my birthdays for all the things I couldn’t do in that year. I do remember everything I could and did do, both on that day and the 364 days in between. For my 10th birthday, I remember having a picnic in the park and running around the playgrounds playing hide-and-seek. For my 21st, I remember going to a local bar, Baja Bean, and getting the coveted sombrero so everyone would know I was celebrating my big day. For my most recent, the 26th, I rode in a small seaplane over the city, then landed into the river.
Birthdays have always been, and always will be, a celebration of my life. It’s the progression over time, despite my best efforts to stay as healthy as I possibly can, that I’ve found to be somewhat discouraging at times.
When I blow out my 27 candles next year, there will certainly be a diminishment in my physical abilities. But I won’t be dwelling on it. I’ll be thinking about all of the new things I did, the places I went, and the people I met.
To read the original article, please click here.
by Mary Bulman; Independent UK
“Woman spends record six days without lungs thanks to ground-breaking procedure”
Yes you’ve read that correctly.
Yes, it reads six days.
A true miracle! Definitely an understatement.
Though it’s been over a year since this procedure was carried out, it’s one that I believe cannot be shared enough. A huge step for medicine and science- but perhaps a larger one for the human condition and the willingness to live and fight.
“I still don’t believe it happened. It seems very surreal.” says patient Melissa Benoit.
And that’s because it is, Ms. Benoit.
After coming down with the flu the last year 2016, Ms. Benoit was taken from her home in Burlington, Canada to the ICU in a nearby hospital located right outside of Toronto, Canada. Doctor’s made the spilt decision to go through with a first time procedure in order to save her life. After becoming resistant to most antibiotics, bacteria began to move throughout her body, eventually causing her to lapse into septic shock. One by one her organs started shutting down, due to the decline of her blood pressure.
“Although it had never been carried out before, doctors decided to remove her lungs entirely.”
“What helped us is the fact that we knew it was a matter of hours before she would die,” said Dr Shaf Keshavjee, one of three surgeons who operated on her. “That gave us the courage to say — if we’re ever going to save this woman, we’re going to do it now.”
To learn more about Ms. Benoit and the new breed of surgery that was carried out please continue onto the article below:
Guest blog by: Reid D’Amico
Living with CF is hard. As I’ve gotten older, I’ve learned to pivot with many of CF’s new challenges. This has largely been an iterative process of successes and failures with plenty of feedback, patience, and assistance from friends and family. However, I’d like to focus on a few elements of CF that I believe have augmented my professionalism. These are elements that have taken time to develop, and are still being developed, but I believe that CF has provided a solid foundation for this professional growth. Continue reading Three Ways CF Helps Me in My Career