The Hospital Comfort Kit Is Now Available!

The Hospital Comfort Kit Is Now Available!

When Rebecca Poole was admitted to the hospital in December 2014, she had no idea that she would not be discharged for 219 days. Her husband Ray focused daily on what he could do to make her more comfortable. Friends and family would ask what they could do to help and at the time he didn’t have an Continue reading The Hospital Comfort Kit Is Now Available!

Broadway’s biggest stars come together to raise money for Cystic Fibrosis

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.”

This story was originally published on AOL.com

Cystic Fibrosis Awareness: Sharing A Story & The Facts

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.

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.

Gabriella-Balasa-Traveling-Quote-Orginal

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.

Gabriella-Balasa-Traveling-Nebulizer-Featured-Rectangle
To continue reading this article, please visit the CF Foundation Blog.

26 Years and Counting with CF

By Ella Balasa

The day I was born, the median life expectancy of someone living with cystic fibrosis was 31. Although I haven’t reached that median yet, I feel like I’ve beaten the odds.

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.

Freedom!

Guest post by: Kathy Russell

Today was a terrific day! We have just experienced a three-day series of high temperatures in the 80s. In the middle of summer that would be quite normal, but getting that kind of weather in April is extremely rare in my part of Oregon. I made the most of those days.

In our front yard, we have a very old and very large black walnut tree. There is a brick planter built around the base of the tree and there are various plants, including several sword ferns, growing in it. The sword ferns are beautiful if they are properly groomed. Each year, when the weather permits, I get out and cut away all of the old fronds to make room for new growth.

I didn’t get to do that last year because of my health. I just didn’t have the energy to do the bending and twisting that the task entails. Also, since I am on continuous oxygen, it makes getting out to the tree a bit problematic. Dragging my portable oxygen concentrator (POC) while I am pruning the ferns is a bit of a pain. I bend over and cut some old fronds, then I have to stand up and drag the POC to my next position. It makes it more of a chore and a lot less fun than it used to be before I was on oxygen.

Yesterday I worked on a couple of ferns that I could reach with the length of hose that is on my big concentrator. That was fairly workable, but I couldn’t go beyond the range of my hose. Also, I couldn’t reach two of the ferns. After about an hour I was getting too hot and decided to stop working on a large fern that was at the end of my tether.

Today, my husband took my large concentrator outside and plugged it into an outdoor outlet. With the 75 feet of hose that I have on it, I had a lot of freedom to move around. I was able to finish the fern that I left yesterday and finish the final two. I didn’t have to worry about running out of hose length and I felt so unencumbered. It was so great to be able to move around like a normal person. I absolutely loved that feeling of freedom. It was almost like not even being on oxygen.

My oxygen saturation stayed in a very good range and I got a couple of hours of fresh air. I was mostly in shade so I didn’t have to worry about being in the sun too long. Having the ability to move around and not have to drag a POC was a real gift as far as I am concerned.

Stream “Up for Air” Documentary this Month for Free!

Jerry Cahill‘s documentary, “Up for Air”, provides viewers with an inside look at his personal fight for survival while living with #CF. During national #DonateLifeMonth (4/1 – 4/30) use the code: BEANORGANDONOR to watch the documentary for FREE! Tap the link to watch: https://vimeo.com/137872395

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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.

To continue reading, visit CFF community blog.

Introducing our Newest Board Members!

Rachel Steinman

Hi! My name is Rachel Steinman, I’m 29 years old, and I’m super excited to be a member of the USACFA board.

I was diagnosed with CF at the age of 16 and have been very fortunate to have had fairly stable health throughout my life thus far. 

No matter one’s level of health, USACFA is an important outlet for our community. CF is a complicated disease and it affects every patient in a unique way. For me, having an online community has helped me both learn more about this disease, and feel less isolated in the process. 

I graduated from the University of Miami with degrees in Journalism and Sociology in 2009, and I spent a year volunteering with Americorps shortly after. A few years into my career I decided to quit my job and move to Tel Aviv, Israel for a change of lifestyle and a marketing position with a tech company. I moved back home to NY after a year to be close to my family.

I grew up on Long Island and currently reside in NYC with my boyfriend where I continue to work in digital marketing. I enjoy cooking, traveling with my boyfriend, and spending time with friends and family.

I believe I’ve been able to maintain good health with the help of a great team of doctors at Columbia Presbyterian in Manhattan, a positive attitude towards life with CF, lots of acupuncture and cupping therapy, and a very loving, supportive family.

As a new member of the board, I’m excited to be joining both the blog and social media committees, so please look out for future posts from me!

Amy Sylvis

Hello! My name is Amy Sylvis and I am so grateful to be a member of the USACFA board. I have been an avid reader of the CF Roundtable since the late 90s and I am forever grateful for how much I have learned over the past 2 decades from the publication. I fiercely believe that all people with cystic fibrosis should have access to the best care and latest knowledge – and I’m thrilled to be able to contribute to this prestigious organization. My specific passions include hemoptysis, aspergillus, CFRD and decreasing quality of treatment variation across CF centers in the United States.

I am 36 years old, diagnosed at 6 months old. I earned my Bachelors of Science in Business and Bachelors of Arts in International Relations from the University of Southern California as well as my Masters in Business Administration from USC. I have worked full time mostly in biotech and pharma, which continues to be my passion despite my health forcing me to leave work in 2017. In my spare time you can find me reading non-fiction, watching college football and traveling. My husband and I were married in August 2017, and we live in Los Angeles, CA with our little cocker spaniel/dachshund mix.