7 Things Your Partner with CF Probably Isn’t Telling You

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.

This post originally appeared on CF News Today.

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

Surviving Home IVs As a Mom

By Janeil Whitworth

I’m no stranger to home IV antibiotics.

Actually, if I am being completely honest, I think we have gotten a little too friendly over the past decade or so. I prefer to do home IVs because I am one of those patients who goes a little nuts after being trapped in the hospital for too long. Seclusion and unlimited access to cable are not beneficial to my physical or mental well-being. I need the opportunity to be with people just as much as I need the comfort of my own bed to rest and heal completely. I’ve even gone as far as learning to access my own port-a-cath to create even further distance between the hospital and me. Plus, I enjoy the luxuries of home IVs such as creating my own schedule, eating my own food, using my own toilet paper, and coming and going as I please.

Releasing control

I’m positive I’m not the only one who struggles to release control over my disease while experiencing an exacerbation. Feeling the façade of freedom slipping away post-IV-talk, I involuntarily tighten my grip on my independence in a desperate attempt at normalcy.

In-patient admission? No way. Home IVs? Ok, I can do that. Thankfully, you can travel on home IVs, celebrate your bachelorette party on home IVs, and even graduate college on home IVs. But is it possible to successfully care for a 9-month-old baby on home IVs?

After the past few weeks of increased shortness of breath and unwavering fatigue, I agreed it was time for IVs. The reality of home IVs as a mom suddenly hit me as I exhaustedly said for the millionth time that day, “Please, don’t eat mommy’s IVs, buddy.”

I knew this was not going to be easy with a mobile, energetic baby crawling every which way, leaving a trail of alcohol pads in his path. (I think this might be the fatigue talking, but the crunchy hospital bed and one-ply toilet paper are starting to seem a little better right now.)

The last time I did home IVs, my son was 4 months old, so it made it a tad easier as he was just a chubby and adorable blob. I would set him down, hook myself up to the antibiotic-filled Eclipse ball, and he wouldn’t move. Those were the days.

There’s been very little rest this week, and admittedly, I tried my hardest to do it all even if I was feeling absolutely poisoned. In my defense, I felt my independence as a mom was slipping away once again, and the impulse to hold on tighter completely crept up on me. This way of thinking will not benefit me in the long run, neither as a mother, nor as a patient. A week has passed since I accessed my port to begin treatment, and I can see more clearly now that I am in desperate need of a different rhythm.

Finding a different rhythm

I am going to attempt to take my own advice for the remainder of treatment, including: 1) Ask for help; 2) Be easy on myself when it comes to everything else; 3) Remain grateful for the privilege of staying home. My normalcy in the coming weeks will look a little different. My parenting style will be altered as well. I need to accept that this is the price for staying home with my baby, while simultaneously being the nurse and patient. Everything needs to be taken in stride as I release my grasp and let the rest, antibiotics, and baby hugs heal me. I think this is the key to surviving home IVs with my health, sanity, and pride intact. I hope.

This blog was originally published on CF News Today.

Jerry Cahill’s CF Podcast: Stem Cell Research with Dr. Hans-Willem Snoeck

In this feature of The Path Forward with CF series, Dr. Hans-Willem Snoeck, Professor of Medicine (Microbiology and Immunology) at CUMC, sits down to discuss stem cell research as it relates to CF.

Because lung cells regenerate and repair themselves regularly, researchers believe that – some day – stem cell technology could be a one-time therapy to cure cystic fibrosis. Research is ongoing, but in the meantime, scientists can currently use human pluripotent stem cells to create lung organoids (tiny, 3-D structures that mimic features of a full-sized lung), introduce various mutations, and apply technologies to learn more about those mutations’ characteristics.

This video was originally published on JerryCahill.com

Vertex Employees Donate $1M to CF and Other Communities via Matching Gift Program

By Carolina Henriques

Vertex Pharmaceuticals employees have raised more million $1 million  using  the Vertex Foundation‘s matching gift program in a show of commitment to causes that include the cystic fibrosis (CF) community, a company press release states.

The dollar-for-dollar matching gift program is being run through the nonprofit Vertex Foundation, established by the company in November 2017 as part of it’s charitable giving goal of donating $500 million to qualified nonprofits and other causes worldwide over 10 years.

To date, more than 500 Vertex employees have used the program to support 753 charities around the globe working to advance work in areas that include healthcare, human services, education, and disaster relief.

Vertex’s charitable commitment has four primary goals: supporting CF patients and caregivers worldwide, including enabling access to Vertex’s medicines; helping underserved students and young women with STEAM (science, technology, engineering, arts and math) education; supporting young doctors and scientists; and strengthening and fostering innovation in local communities through health and wellness programs.

“Giving back is in our DNA at Vertex, and our employees have a long history of going the extra mile to improve the lives of patients, students and their neighbors,” Jeffrey Leiden, president, chairman and chief executive officer of Vertex, said in the release. “I’m proud that The Vertex Foundation is able to help extend the impact of our employees’ giving and look forward to seeing the reach of these investments in the causes they care about most.”

Also as part of its 10-year commitment, Vertex awarded $400,000 in scholarships to eligible CF patients and their family members in May as part of its second “All in for CF” scholarship program. In total, 80 scholarships worth $5,000 each were awarded for the upcoming academic year.

Vertex, which specializes in cystic fibrosis, has three approved CF therapies: Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), and Symdeko (tezacaftor/ivacaftor).

The company is also testing potential triple combination treatments for CF.

For the rest of this article, click here.

How to Beat Brain Fog

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.

Jerry Cahill’s CF Podcast: The Pre-Transplant Process with Dr. Emily DiMango

The latest video in The Path Forward with Cystic Fibrosis series, Dr. Emily DiMango, Director of the Gunnar Esiason Adult CF Program at Columbia University Medical Center, discusses the lung transplant process through the lens of a CF doctor.

First, she reviews the importance of CF patients participating in drug trials in order to start life-changing medications sooner. She then answers the following questions:

· What does pre-transplant management look like for a CF patient?
· When is the right time to be referred to the list?
· What is the referral process like?

Finally, she reiterates the importance of well-rounded treatment that includes physical health, nutritional health, and emotional health.

This video was originally posted on JerryCahill.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.

Call for Articles Published in CF Roundtable! Due June 15th

When disaster strikes, what is important to you??

What are the things that you know you must have with you in the event of a disaster, either natural or manmade? Where do you keep these essential items? What plans have you made for surviving when basic services are interrupted? It could be even as small of a disaster as when your air conditioning goes out in the heat of summer? How do you manage?

Please consider contributing to CF Roundtable by sharing some of the experiences of your life. In addition to the focus topic, we welcome humorous stories, articles on basic life experiences, short stories, artwork, cartoons, and poetry. We require that all submissions be original and unpublished.

With your submission, please include a recent photo of yourself as well as your name, address, and telephone number. Photos will be returned. Or email a high-resolution JPEG along with your article. Type or hand-print your submission, using a plain font, not script, and please double-space your article.

Submissions due June 15, 2018.

Mail To: CF Roundtable, PO Box 1618, Gresham, OR 97030-0519

Email To: cfroundtable@usacfa.org

Calling All Students! LMK Scholarship deadline June 30th!

CF Roundtable offers the Lauren Melissa Kelly (LMK) Scholarship award each semester, in honor of Lauren Melissa Kelly. The academic scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees.

Nancy Wech, Lauren’s mother, established this scholarship in Lauren’s name and memory. In Nancy’s own words:

Lauren Melissa Kelly was an extraordinary woman. Laughing, gregarious, spontaneous, fun, talkative, driven, thoughtful, smart, kind and loving — all descriptive terms for Lauren, who lost her battle with CF late in her senior year at the University of Georgia. In 1992, Lauren was chosen as one of ten Senior Leaders at University of Georgia. She had distinguished herself as a member of the Golden Key Honor Society, Mortar Board, Phi Upsilon Omicron, Gamma Beta Phi, the Tate Society and Delta Gamma sorority.

Lauren felt the most significant opportunities of her college career included participation in the reconstruction and formation of organizations, which will serve the university in the future. She acted as one of the re-founding members of the Phi Kappa Literary Society and was significant in the metamorphosis of the Z Club into the William Tate Society. Her other activities included Greeks Advocating Mature Management of Alcohol (GAMMA) in which she served as Secretary and Special Events Chair. She was also a member of the Women’s Glee Club for more than two years.

In recognition of her academic performance, Lauren’s degree of Bachelor of Science in Family and Consumer Sciences was awarded posthumously. At the time of her death, Lauren was engaged to be married and living off campus in an apartment. She lived life to the fullest!

Walt Disney said, “Don’t cry because it’s over, smile because it happened. It’s not the days in life you remember, it’s the moments.” As Lauren’s mother stated, “I smile because she happened to me. Now, I want you to smile because she has happened to you.”

Please visit our website for application and full scholarship criteria and details. http://www.cfroundtable.com/community-outreach/united-states-adult-cystic-fibrosis-association-scholarship/

Send any questions to scholarships@usacfa.org.