Managing CF-Related Diabetes on the go

In this Cystic Fibrosis Wind Sprint, Jerry Cahill gives his tips and tricks for managing CFRD post-transplant. He finds that checking his sugars pre and post workout helps him keep his sugars stable. He also keeps water, candy, and sugar pills in his car in case of emergencies.

Continue reading Managing CF-Related Diabetes on the go

Home Spirometers: A Useful Tool in Tracking CF Symptoms and Progress

Guest Blog By: Meranda Honaker

Over the last several months my health has continued to decline despite being compliant and diligent with my healthcare routine. In July I developed a fever during a trip to Boston to speak to a biotech company about my journey with cystic fibrosis. I developed a fever and by the end of my visit, I was unable to walk up steps without severe dyspnea. I was so exhausted from feeling sick I would return to my hotel room to lay in the bed for hours to rest. My chest pain and shortness of breath became so severe in the coming days that I could no longer take a deep breath. I checked my SpiroPd home spirometer which displayed a definite decline in my lung function. I immediately contacted my CF clinic to see my CF doctor. Initially, despite feeling bad, I assumed I was feeling poorly and decided not to rush to CF clinic. Sometimes I have a bad day or few bad days health wise and begin to improve on my own. Once I saw my lung function had declined I knew I needed to be seen in CF clinic rather than waiting it out.
Continue reading Home Spirometers: A Useful Tool in Tracking CF Symptoms and Progress

Tips For Never Missing Your Meds

In this Cystic Fibrosis Wind Sprint, Jerry Cahill talks about the importance of never missing your medication, especially post-transplant. To help him keep track of his meds, Jerry keeps color coordinated pill cases in his car with extra doses of medications in case he ever forgets to take them. He also keeps extra dosages in his backpack, which he carries with him everywhere, for the same reason.

The video wind sprint was made possible through an unrestricted education grant from Genentech to the Boomer Esiason Foundation.

AbbVie Announces 25th Annual Cystic Fibrosis Scholarship Program Including 2017 Thriving Student Scholarship Contest and Blogger’s Choice Award

• In honor of the program’s 25th anniversary, AbbVie is awarding three $25,000 scholarships, including a new award category – the Blogger’s Choice Award
• Cast a vote online or via text message, through October 13, 2017, to help determine this year’s Thriving Undergraduate and Continue reading AbbVie Announces 25th Annual Cystic Fibrosis Scholarship Program Including 2017 Thriving Student Scholarship Contest and Blogger’s Choice Award

We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

By: Jacob Greene

Cystic Fibrosis is an awkward disease. Whether it’s coughing attacks in the middle of tests, the infamous CF digestive issues (for professionalism’s sake I will leave it at that, but you know what I mean), or loud treatments in the morning and at night, there are many awkward aspects to cystic fibrosis. CF’s median life expectancy is no different. Continue reading We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) Patient Task Force Meeting is on September 18th!

By Kelly Gilmore

On Monday September 18th from 12:30pm PST- 2:30pm PST we are having a virtual discussion with CF women, and you’re invited! We need your help in understanding what aspects related sexual and Continue reading The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) Patient Task Force Meeting is on September 18th!

News on Clostridium difficile toxins

https://www.dovepress.com/high-prevalence-of-subclass-specific-binding-and-neutralizing-antibodi-peer-reviewed-article-CEG

High prevalence of subclass-specific binding and neutralizing antibodies against Clostridium difficile toxins in adult cystic fibrosis sera: possible mode of immunoprotection against symptomatic C. difficile infection Continue reading News on Clostridium difficile toxins

Cystic Fibrosis Wind Sprint 58: Extended Hospital Stays and Leg Workouts

Jerry reviews the various leg stretches and workouts he uses during an extended hospital stay. By working out regularly and keeping his legs nimble and strong, he knows that, as soon as he leaves the hospital, he can get back on his bike and back to training for his next adventure. Always remember – Continue reading Cystic Fibrosis Wind Sprint 58: Extended Hospital Stays and Leg Workouts

New health bill replaces hope with fear in cystic fibrosis patients

http://thehill.com/blogs/pundits-blog/healthcare/340084-new-health-bill-replaces-hope-with-fear-in-cystic-fibrosis

Letter from Preston W. Campbell, III, M.D.

As the Senate considers its proposal for healthcare reform, I urge lawmakers not to forget the millions of people who will rely on this legislation for lifesaving medicines and care. There is much more at stake with the Better Continue reading New health bill replaces hope with fear in cystic fibrosis patients

5 Inspirational Individuals with Cystic Fibrosis worth Following on Social Media

By Ella Balasa

I’ve created a list of young woman and men who make the most of life despite battling Cystic Fibrosis. They share their experiences, the good and the bad, on social media. They inspire, educate, and spread awareness about CF. As a person with CF myself, though I live a full life and experience similar obstacles and triumphs, I haven’t gotten the courage to show this kind of vulnerability. I hope they show both CF and non-CF people alike that we all can do many things we set our minds to despite having seemingly insurmountable obstacles in our way.

  1. Instagram: Fight2breathe

Caleigh is a 27-year-old woman who received a double lung transplant October 20, 2015. She shares posts about her daily struggles and triumphs in dealing with CF and transplant and now more recently dealing with the rejection of her lung transplant and her rapid health decline. She is incredibly knowledgeable about many procedures and tests her and her doctors discuss and she shares them with her followers in a way everyone can understand. Her genuine personality, charisma, and strength are all palpable through her words through which she relates her true fears, hopes, insecurities, and raw emotions about an unknown future. She finds something beautiful in every hard day, whether that be being able to see her pets, spending time with her loved ones, or just reading the uplifting comments on her posts.

  1. Instagram: lung_story_short

Rima shares her experience of fighting CF through humor and keeping lighthearted. Her sister shares her journey as being her caretaker while she waited for a transplant. She spent many days in the hospital exploring the hallways, playing games, crafting, and making friends with nurses. She has recently received a double lung transplant (5.14.17) and is now sharing her amazing recovery process day by day! Her lung function is increasing quickly and is gaining so much endurance and strength since being transplanted. She shares a lot about CF awareness and is becoming more known through the CF community.

“Hi my name is Rima and I have Cystic Fibrosis. I had come to the point in my health where my old lungs could no longer serve me and I was in need of a double lung transplant. Here I am now at 27 years old with brand new air baggies! It was a long journey but I am made it with the help of my trusty sidekick Laima, my sister. She joined me on my quest for new lungs when I decided to move to Colorado. The transplant center there decided that they didn’t want to do my transplant because they said that my post-transplant care would be tricky and risky due to how resistant the “bugs” in my lungs were to all antibiotics. So then the search for another center began. Thanks to my sister she discovered the U of M in Minneapolis MN with the help of a friend. Since that discovery, we are now part of the U of M family indefinitely. Throughout this whole thing, we decided we wanted to document and share everything Cystic Fibrosis related as well as transplant and organ donation. We started a blog last spring as well as started sharing on social media via Instagram, Facebook, and Twitter. We want to help spread awareness because there are so many people out there that are unaware of Cystic Fibrosis. There are also a huge amount of people that aren’t organ donors, many of them just don’t know how to become one but many just avoid the subject due to either personal or religious reasons. Another thing we want to show people with CF is that you can still have a fun-filled adventurous life, you don’t have to live your life cooped up in your house to keep good health. Laughter, sunshine and the outdoors soothes the body and soul! The Cystic Fibrosis community needs a cure, and with the help of spreading awareness, we can help raise funding for research! If you would like to keep up with our story you can follow us on Instagram: @lung_story_stort, Facebook: lung story short and for the blog atwww.lungstoryshort.com” -Rima

  1. Instagram: Tiffrich22

Tiff is a 28-year-old woman who was diagnosed at birth with cystic fibrosis. She resides in sunny California where she got a transplant November 30th, 2016 at Stanford University. A few years ago she started a campaign to meet her idol Taylor Swift at a concert. With the help of family, friends, and strangers, she got her wish. Her campaign led her to start her very own YouTube channel, LUNGS4TIFF, where she helps educate people and raise awareness about CF and the hardships while telling her story through videos. She intends to show others through social Media that having a positive spirit and desire for fun in life helps anyone get through the toughest times. She is thriving and planning for adventures to come.

“Through my Instagram, I have been able to show all of the sides of CF and transplant. I knew I wanted to be real and show the not so “glamorous” side of this disease, as well as the happy go lucky side. I feel by showing the hardships that I have faced, it has helped others know that it’s okay to struggle. I always say that there’s always someone going through much worse and that I’m lucky. Now with new Lungs, I am able to start my second chance at life and go check off my bucket list items. I have been able to check off my first NBA game (Go Warriors) and ride in a hot air balloon! I am blessed and can’t wait to post more about my adventures and my journey with new Lungs.

Another way I use Instagram to help the CF community and foundation is through mine and my best friend, Lea, @SaltyCysters page. We have joined forces to provide awareness and started making workout clothes to motivate the CF community to get their lungs moving and profits go to the CF Foundation to use for research and development towards a cure.

CF Awareness is very important to me. My passion is to help others and I think that by sharing my story via Instagram and all forms of social media, I am able to show that being positive is key to conquering this horrific disease. I will continue to raise awareness and share my story, hoping that CF will soon stand for Cure Found.” – Tiff

  1. Youtube: Staying Salty Youtube Channel

A group of 6 individuals talk, inform, help, and educate about their lives and experiences with CF. They come from all different backgrounds and live all over the country. They each post a video a different day of the week. They make videos on various topics related to living life with CF, including a day in the life, how they tell others about CF, surgeries they’ve had, medication organization, CF clinics and much more. Many videos are informative and interesting to view how others with CF are managing and succeeding in life! They have full-time jobs, they travel, they raise families, and importantly, they raise awareness for the CF community.

  1. Youtube: The Frey Life

A young couple, Mary and Peter, along with their pooch Oliver, share their day to day lives in daily vlogs on their YouTube channel. Mary has CF and they share the details of daily breathing treatments, doctor appointments, and the highs and lows of dealing with a chronic illness, both as a patient and a partner. Besides the aspect of Mary’s diagnosis, they share their strong faiths and their beautiful love story as a couple with their 100K subscribers.