Cystic Fibrosis Podcast 191 ‘Why do you run?’ with Ben James

In his latest podcast, Jerry Cahill sat down with Ben James, a 19-year-old college student who was diagnosed with cystic fibrosis at 4 years old. Originally from Chester, VA, Ben now attends Mount Vernon Nazarene University in Ohio where he studies pre-medicine. When he isn’t focusing on school subjects like anatomy and physiology, Ben likes to play basketball and soccer, and also likes to run long distance.
Ben loves the challenge of running long distance for a number of reasons, including building character, facing challenges as an individual, and learning discipline, which helps with his overall medical compliance.
Click here to listen:
This podcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

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

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

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

Lessons Learned Through Parenting and CF

Guest Blog By Jeannine Ricci

Back in 2001, when I became a mother, resources on parenting
with CF were practically nonexistent. Thanks to all of the
research advancements, it’s so exciting to now see more and
more people with CF exploring the possibility of parenthood.
Because this topic is becoming more prevalent, I thought it might
be a good time to resurrect an article that I wrote 5 years ago. It
discusses my experience with talking with my children about CF
and the possibility of a shortened life expectancy. Hopefully it will
help other parents as they face this challenging subject.
At the end of the article, I give an update on my daughters
and how their experience with my CF continues to impact their
lives.

***Lessons Learned- Parenting with CF***

My CF has shaped my children’s lives for as long as they can
remember. As toddlers, they developed patience. After many
temper tantrums, they eventually learned that I had to finish my
treatments before we embarked on our day’s adventures. As
preschoolers they learned empathy. They would run to get me
tissues and water if I was having a coughing fit. Their teachers
would comment on the level of empathy they showed their
classmates and how unusual it was at such a young age. During
their school years, they are learning to become more
independent. Just last week, my older daughter surprised me by
making their lunches and helping her sister with her homework
because she knew I was not feeling well.

Since CF had been woven into their everyday lives, I took their
comfort level with my CF for granted. They knew that CF meant
coughing, treatments, and IVs. What they did not know was that
it is a life-threatening disease. I regret having not broached this
subject with them as soon as I felt they were mature enough to
handle this information. Last year my daughter’s teacher called
to tell me that he was concerned about her. She was not herself
at school. She was very distracted and seemed depressed. I
knew immediately what was bothering her. I was on IVs because
of an especially difficult exacerbation. The side effects of the
antibiotics left me on the couch most of the day. It was the
sickest she had ever seen me. We had a long discussion after the
phone call and she opened up to me and told me how she had
read something at the CF walk that stated that the life
expectancy of someone with CF was 37 years old. I was 40. It
truly broke my heart to know that I was not there to answer her
questions and ease her fears when she read this critical piece of
information. She deserved to hear this from me. As I spoke to
her, I tried to give her realistic but hopeful answers. I told her
that I wanted nothing more than to watch her and her sister
grow up and that I hoped to be there for her college graduation,
her wedding, and the birth of her children. I explained that there
are so many new medicines being discovered that would help to
make this a possibility, but I also told her that there are no
guarantees, and that is why I try so hard to keep myself as
healthy as possible.

Just as my children have always incorporated important life
lessons from my illness into their lives, I believe that this
discussion will only further strengthen their character. It will
teach them the value of treating every day as a gift. I hope my
experience encourages other parents with CF to be prepared to
have this pivotal discussion with their children. No matter how
difficult it may seem, it will be worth the peace of mind knowing
that you will be the one delivering this information, ready to help
them cope with their fears.

Here are some guidelines from Lisa C. Greene, a mom of two
children with CF and co-author with Foster Cline, M.D. of the book
Parenting Children with Health Issues (www.PCWHI.com)

• Pivotal parenting moments can take us by surprise, so be
prepared ahead of time. Our answers should be honest, calm,
matter-of-fact, and hopeful. We shouldn’t use terms like “fatal”
or “life-shortening” nor should we make empty promises. Use
terms like “healthier” rather than “healthy,” “more likely to live a
long time” rather than “will live a long time.”

• We need to try our best not to let our own fears and worries
show, both in our words and in our body language. Children pick
up on (and tend to mirror) their parents’ emotional cues,
especially when they are young. If you are having trouble
controlling your own emotions about these tough issues,
counseling might be helpful.

• At some point, we do need to address the issue of life
expectancy. Hopefully, this will be clarified by around the age of
eight (around 3rd grade) depending on the maturity of your
child. One way to address this issue is to ask your child questions
to open up dialogue. Some examples are:
“How much do you know about CF?”
“How are you handling it?”
“Is there anything about CF that worries you?”

With a little awareness and preparation, you can make talking
about these difficult issues a positive experience. Relationships
can grow closer when people go through tough times together.

Update: 5 Years Later
It’s no surprise that this disease has continued to shape my
daughters’ lives over the past 5 years. There’s no denying that my CF, anxiety, and depression have caused many hardships for my family. And it’s
difficult not get swallowed up in the guilt of knowing that there
are times that I’m not able to be the mom that I desire to be, the
mom that they deserve. During these times, I try my best to
focus on the positive ways CF has touched their lives.

The attributes of fortitude and courage were fostered as they
watched my battle with CF progression as it inched its way closer
and closer to the center of my life–our lives–demanding more
attention. And then, in November of 2014, they witnessed hope
being transformed into tangible reality as I swallowed my first
dose of Kalydeco. This new reality has allowed them to more
confidently envision me by their sides in the distant future. They
have embraced this gift with a deep sense of gratitude that can
only be felt when someone has experienced the threat of the
unbearable alternative.

They have watched as this same gratitude has fueled my desire
to help others who are still waiting for their miracle. At the young
ages of 15 and 17, they possess a keen understanding of the
intrinsic value in every life, and that the amount of money in
someone’s bank account or what type of insurance they have
should not be dictating access to these life-saving medications.

They have learned the importance of taking action and
advocating for others, even if your voice is seemingly
overpowered by others. They have both participated in the Cystic
Fibrosis Foundation’s Teen Advocacy Days in Washington D.C.
the last few years, meeting with members of Congress and
stressing the importance of ensuring adequate healthcare
coverage for all. They recognize the gifts both given and received when you touch a person’s life indelibly and both of my daughters have expressed an interest in pursuing a career in the healthcare field. 

I’m so proud of them as I watch them develop into
compassionate, strong, young women, inspired to make their
mark on this world; a mark that undoubtedly would not be so
deep and impactful if it wasn’t for the valuable life lessons they
have gleaned from having someone they love with CF.

Ground-Breaking Procedure. A major step for science, medicine, the human condition

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:
https://www.independent.co.uk/news/world/americas/woman-six-days-without-lungs-waiting-list-donor-organ-burlington-ontario-melissa-benoit-world-first-a7547936.html

Bustle for muscle

by Brennen Reeves

A mom who played college basketball. A dad who entered the army at eighteen. A brother who received a football scholarship after high school. That’s my family.
Me, I like theatre and acting.

I like to workout. I can do most anything, though I tire when I run. Running, not a daunting task for anyone else in my family- nor was the ability to put on weight or the ability to gain muscles. Both were and still remain a struggle of mine today. I understand the weight section- I have CF, my heart beats faster than other hearts, my digestive tract is not on track and diabetes is well, diabetes. Sadly, I cannot understand why I cannot gain muscle. Or turn the muscle that now exists to a lean quality.
I exercise just as much as the next person.

My parents and brother, they’re athletes. Sure, being athletic doesn’t necessarily mean you possess muscle, but my family did. I retained some of those genes. I played baseball, I owned a lacrosse stick, I love to golf. I count that as a sport (so what if I ride in the cart?).
I have coordination.

I received a bilateral lung transplant over 7 years ago. Within that gap, and day by day I become more flexible, stronger, newly energized, with no luck of further muscle growth. The weight is there. Up about thirty-five pounds. But how come there is no significant muscle gain, or the leanness to which I work for? Could it be a diet issue? Because the thirty, sixty, ninety day routine after these 7 years has been ineffective. I still come up short and this lets me down, my physical appearance.

I’m 5’6” and weigh around 120lbs. My body is symmetrically balanced. I have new lungs. There’s the determination- so why this outcome or lack of?
This is not a lecturer post but more a collaborative question- what is your secret? Do you have a secret? Is it a secret?

Sure, I still have CF, yes, my heart still beats faster than other hearts, yes, my digestive tract needs aligning, and well, diabetes still remains diabetes. Just about every other facet since my surgery has changed, emotionally, physically, etc., and my body is still present just with a little more weight with nowhere to go.

I challenge this. Could it be the severed nerves under my breast plate have yet to heal or reconnect, making it harder to attract muscle in this area? The numbness from my shoulders on down through the wrists lose feelings during most points of the day, is that a sign indicating powerless limbs?

“7years. Brennen your body needs more time to heal”
Ok.
—–
Wait,
or could it just be my body?

Three Ways CF Helps Me in My Career

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