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.

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

Sign up for BreatheCON Sept 8th and 9th!

By Jeanie Hanley MD, President of USACFA and
John Mercer, BreatheCon 2017 Co-Chair

Sign up today for this FREE virtual event for adults with cystic fibrosis.

Our USACFA director, Mark Levine, is a featured Keynote Speaker on Friday and our CF Roundtable columnists, Aimee Continue reading Sign up for BreatheCON Sept 8th and 9th!

USACFA Scholarship Opens June 1st 2017-June30th for Fall 2017!

Please share with young adults who would be interested and qualified!

The United States Adult Cystic Fibrosis Association (USACFA) is excited to offer the Lauren Melissa Kelly Scholarship award for the Fall semester 2017. The scholarship will range from $1500 to $2500 and be awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor’s degrees.

Continue reading USACFA Scholarship Opens June 1st 2017-June30th for Fall 2017!

Making it Matter Ep. #21

Making it Matter Ep. #21: Cystic Fibrosis as an Invisible Illness
https://www.youtube.com/watch?v=l3oQZJXV3qQ

Julia and I continue the conversation from our last podcast about cystic fibrosis as an invisible illness in the newest episode of the Making it Matter Podcast. What is an invisible illness, why is it such a challenge and how do we deal with Continue reading Making it Matter Ep. #21

ICYMI: Man’s Best Friend—Own It By Gunnar Esiason

So, what I want to talk about (as if the title didn’t allude to it) are my dogs. I wholeheartedly believe that dogs are an incredible asset in the fight against cystic fibrosis, or any chronic illness for that matter. They show unconditional Continue reading ICYMI: Man’s Best Friend—Own It By Gunnar Esiason