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Congratulations to Our Scholarship Winners!

The US Adult CF Association (USACFA) is excited to announce our recipients of the Lauren Melissa Kelly Scholarship for the Spring of 2019.

In our evaluation, we look for students who demonstrate tremendous academic achievement, community involvement and a powerful understanding of how having CF matched with these achievements places them in a unique situation to gain leadership roles within the community. Our scholarship is open to all pursuing any degree, from associates to Ph.Ds. We believe that any higher education is a strong foundation for advocacy and involvement in CF.

We are pleased to announce Rebecca Cedillo and Michael Miccioli as the recipients of this semesters’ scholarship. Congratulations to them! They will be awarded $2500 each.

Both of our recipients demonstrated the leadership, intelligence, and drive of Lauren Melissa Kelly. We at USACFA look forward to seeing them further develop their leadership and advocacy in the cystic fibrosis community.

We are excited to announce more scholarship opportunities coming soon! Please stay tuned for more information. For questions, please contact us at scholarships@usacfa.org.

Catastrophizing and Cystic Fibrosis: Fear of Breathlessness Impacts Quality of Life

By Carisa D. Brewster

A new study has found an association between the cognitive process of breathlessness catastrophizing (BC) and poor health-related quality of life (HRQoL) in patients with cystic fibrosis.

Breathlessness is common in patients with cystic fibrosis and does impact HRQoL, even when pulmonary function is in normal ranges. Catastrophizing is a cognitive distortion where irrational thought patterns dominate, and the worst outcome is expected regarding a real or anticipated issue.

Advances in treatment have increased life expectancy for people with cystic fibrosis, but there remains a need to better examine and understand the psychological issues related to quality of life, according to researchers of this study.

“Following in the footsteps of other researchers who have begun to examine breathlessness catastrophizing in respiratory populations, such as those with COPD, we were curious to examine breathlessness catastrophizing among adults living with cystic fibrosis and how it relates to quality of life,” Danijela Maras, MA, lead researcher and doctoral student in clinical psychology at the University of Ottawa, told MD Magazine®.

Participants were recruited from a small observational cohort within the pilot project, “The Ottawa Cystic Fibrosis Treatment Knowledge and Adherence Program”, from May 2011 to June 2013. Patients were excluded if they had received a lung transplant or had an expected survival of less than one year. Final sample size was 45 adults.

The following was assessed for all participants: lung function (FEV1%), depression (Center for Epidemiological Studies Depression Scale), anxiety (7-item Generalized Anxiety Disorder scale), pain (Cystic Fibrosis Symptom Scale, developed by researchers this for study), BC (Breathlessness Catastrophizing Scale, adapted from the Pain Catastrophizing Scale), and HRQoL (Cystic Fibrosis Quality of Life questionnaire).

After controlling for lung function, depression, anxiety, and pain, there was a significant correlation between breathlessness catastrophizing and poor HRQoL (P <.05). In addition, 40% had clinical depression and 13.3% had moderate levels of anxiety.

While results are preliminary and warrant further exploration, Maras said this highlights the importance of assessing and treating mental health difficulties in individuals with cystic fibrosis.

“For example, breathlessness catastrophizing could be targeted in psychological interventions to improve mental health, quality of life, and/or treatment,” she said. “Findings are also relevant for other populations that experience breathlessness, such as those with asthma and other respiratory diseases, neuromuscular conditions, and cancer.”

Maras said that further research should center on longitudinal designs to examine breathlessness catastrophizing in larger and more diverse populations and explore how it plays a role in treatment uptake and adherence.

The study, “Breathlessness catastrophizing relates to poorer quality of life in adults with cystic fibrosis”, was published in the Journal of Cystic Fibrosis.

Click here for original article.

CFReSHC meeting on Aging, Menopause and CF

What is menopause? I’m 30 years old and have heard it groused about for years, but I really don’t know what it is. I have heard from older women with CF that maybe it starts earlier in CF women and that the experience could be different from the non-CF population. I know it has something to do with hormonal changes, more estrogen, maybe? But I have no idea how it will impact my health in the future or what signs and symptoms I should be on the lookout for. On this one, I will follow the girl scouts’ mantra “always be prepared.”

Luckily, CFReSHC is hosting their next Patient Task Force meeting about the menopause experience. It is a great opportunity for any adult woman with CF to learn about what to expect in a few years’ time or to share your wisdom and questions if you’re experiencing or have experienced it.

The meeting will be December 10th from 2-4pm EST.  Laura Mentch, Health Educator, will be sharing her knowledge on the subject.

Please email info@CFReSHC.org, or follow us on facebook for more information.

Recapping the last month of podcasts!

CF Podcast 198: The Art of Healing

In the latest Cystic Fibrosis Podcast, Jerry met with Dylan Mortimer – a 38-year-old artist who lives in New York City with his wife and two sons. As a CF patient, Dylan uses his art to represent his journey with the disease – and to inspire others in their battles to never settle for their diagnoses and keep hope alive past the difficulties they face.
The video podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.

CF Podcast 199: Living Life after a Double Lung and Liver Transplant

Jerry Cahill chatted with Kathryn Norris about her journey with cystic fibrosis in his latest podcast. Diagnosed at 3 months, Kathryn soon moved back to her mother’s home-country, Spain, where she had a different experience growing up with CF. Because of socialized healthcare, she had a great deal of access to specific medications, but no access to more recently discovered treatments. In her hometown, walking to and from school helped her fit exercise into her daily life, as well as a number of extracurriculars including tennis, swim, roller blading, and more.
Tune in to learn more about Kathryn – her path with CF to a double lung transplant and a liver transplant, why she is studying to be a personal trainer, and how she copes with her disease.
This podcast was made possible through an unrestricted education grant from the Allergan Foundation to the Boomer Esiason Foundation.

CF Podcast 200: Being a CF Mom

Today’s CF podcast features Megan Neville – a CF mother and caregiver. She shares her story – from learning of her son’s diagnosis to dealing with the guilt of that news to how she now deals with a teenager who has a chronic illness. She reflects on the importance of having an incredible support system of family and friends surrounding her and how raising a CF child can be a team effort.
Tune in to learn more about Megan and her journey as a CF mom.
This video podcast was made possible through an unrestricted educational grant from the Allergan Foundation to the Boomer Esiason Foundation.

CF Podcast 201: Being a Lung Transplant Coordinator

Today’s Cystic Fibrosis Podcast features Nilani Ravichandran, current AVP for Cardiothoracic and Vascular Services at Beth Israel Medical Center, who spent over 17 years as a lung transplant coordinator at NY Presbyterian/Columbia University Medical Center. She sat down with Jerry Cahill to explain what transplant coordinators do, how they work to minimize infection and rejection, and how they teach their patients to care for their new organs. Nilani says that a transplant coordinator’s goal is to give his or her patients the best quality of life possible when they reach the end stages of their diseases.
This video podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.

CF Podcast 202: Being Grateful

With the holiday season approaching, everyone starts to think about why they are grateful. In this video, a number of post-double lung transplant recipients share their reasons for being grateful, how they honor their donors, and more.
Don’t forget – registering to be an organ donor can save a life! Register today: donatelife.org.
This video podcast was made possible through an unrestricted educational grant from Chiesi to the Boomer Esiason Foundation.

As Both Patient and Scientist, I’m Putting Nature’s Medicine to the Test

By Ella Balasa

I peered into one of the incubators that stored my petri dishes for 24 hours, anxious to see whether I would discover discoloration and unevenness on the surface, which would have indicated that my experiment produced favorable results. I wanted to see a visual representation of whether manuka honey kills the stubborn Pseudomonas bacterium, which dwells in nearly half of the lungs affected by CF.

I’m a microbiology lab scientist, plus an inquisitive writer. I also consider myself an informed, self-advocating realist. Life experiences have taught me that I am solely responsible for my health. I strive to keep my health stable through prescribed medications, healthy diet, and some natural supplements.

During my college years, I focused on the environment, especially the living parts that we can’t see but that are essential to the cycle of life — bacteria. It just so happens that certain ones are, understatedly, little pests for people with CF. The lung bacteria of people with CF birth many symptoms and infections.

I continually fight Pseudomonas aeruginosa, my nemesis bacterium that spikes fevers within days of overwhelming my immune system and that has caused countless infections, leaving my lungs with pockets of dead tissue. I take antibiotics frequently, but I also believe that naturally derived compounds can have positive effects. So, despite my disdain and nausea, I sometimes supplement garlic, which contains the antibacterial compound ajoene. I’ve also consumed manuka honey; this I’ve done more religiously, as it tastes more like candy than any “medication.” Manuka honey contains the natural antibiotic methylglyoxal, a compound that fights relentless Pseudomonas by causing its cells to burst and die. I took a spoonful a day for a few years until recently. Maybe I stuck to this exorbitantly priced, palatable remedy merely because of its taste and the flawed logic that expensiveness is indicative of effectivity.

I had the idea to test the effectiveness of the honey on my sputum. My mucus grows many species of bacteria, but Pseudomonas is a primary component, so it’s easy to propagate in the lab setting.

Yes, I took a sputum cup of mucus into work. When inoculating the vials with the bacteria, I was slightly anxious that my lab mates might freak out at the sight of the hazardous and vile-looking green blobs. Then again, they work with wastewater from treatment plants, so it really shouldn’t phase them.

I tested a concentration of 15 percent weight per volume of manuka honey, a choice informed by published studies. I tested half of the petri dishes with honey mixed into the nutrients for the bacteria and the other half without the honey. The dishes with the honey should have less bacterial growth if the treatment works. (If you want more detail on the process, drop a comment below this column.)

The yellow dish has the honey added and the white dish doesn’t. (Photo by Ella Balasa)

After the 24-hour incubation period, I was excited to see the results of science that we as patients typically do not participate in. We provide our sputum samples during doctor’s appointments, then labs perform antibiotic resistance tests, and results are returned as values on a piece of paper indicating resistance or susceptibility. We don’t see the process. I was doing this same research on my own, and in a sense, taking the utmost control of my health.

To continue reading, click here.

We Thank You!!

We sincerely thank each and every one of you who donated to CF Roundtable yesterday on Giving Tuesday.

Your contributions are immeasurable! Your support of our organization means the support of many many individuals with CF to help join us as a community and to help spread awareness and resources.

Thank you!

Happy Holidays!

Giving Tuesday is tomorrow!

Dear CF Roundtable Subscriber,

Please consider donating to CF Roundtable tomorrow on Giving Tuesday, November 27th, a national day of giving.

For double the impact, The McComb Foundation will match your donation!!

Your generous past contributions have been essential in helping those with cystic fibrosis find support, medical information and resources through CF Roundtable.

As one reader shared, “I believe my mental and physical health is in a better place than it would be without CF Roundtable. From the importance of exercise, to tips on traveling, to summaries of medical journal articles (some of which not even my doctor was aware of!) – all have had a positive influence on my life. But perhaps the most impactful aspect has been lessening feelings of isolation of living with such a cruel, isolating disease. Thank you!”

Because of you:

  • All of our readers receive the CF Roundtable newsletter at no cost.
  • Our publication & website have the latest research, legal and critical knowledge that has helped to maximize medical care.
  • CF Roundtable gives scholarships to students with CF who are striving for higher education.
  • Our Speakers Bureau presenters (who are all adults with CF) speak at your CF events and spread education and support about CF.
  • We can continue all of this and more!

CF Roundtable is run by a board of adults with CF from our editors to our directors. Our time is 100% voluntary. Together, we create the CF Roundtable publication, website, and numerous programs. We do this for you and our vital CF community.

We hope to count on your support this year. Ultimately, your gift would keep CF Roundtable and the miracles coming! Please go to our website at www.cfroundtable.com or click here and donate!

Happy Thanksgiving!

Dear CF Roundtable Readers,

We wish you all a wonderful Thanksgiving holiday!

At CF Roundtable, we are thankful for our readers and subscribers. Thank you for making Cf Roundtable a part of your life and may you have a holiday filled with happiness and the joys of life!

Tis the season of giving and with the holidays upon us, please consider donating to CF Roundtable on Giving Tuesday, November 27th, a national day of giving.

Your generous past contributions have been essential in helping those with cystic fibrosis find support, medical information, and resources through CF Roundtable.

Ultimately, your gift would keep CF Roundtable and the miracles coming! Please go to our website at www.cfroundtable.com and donate!

Nutritional Well-Being After Transplant Measure of Likely Lung Health

By Joana Carvalho

The study, “Impact of nutritional status on pulmonary function after lung transplantation for cystic fibrosis,” was published in the United European Gastroenterology Journal.

CF is the third most common cause for lung transplants worldwide (16.8 percent of all cases). Although the disease is mostly associated with respiratory symptoms, gastrointestinal complications are also known to afflict patients, such as diarrhea, constipation, malnutrition, and inflammation in the pancreas, liver and intestines.

Previous studies suggest that malnutrition is linked to a poor prognosis in those needing a lung transplant. However, data on the impact of nutritional status on pulmonary function in those who have received a transplant is still quite limited.

In a retrospective study, a team of researchers at the Medical University of Vienna set out to evaluate the impact of nutritional status on pulmonary function of CF patients who underwent a double lung transplant within a median of 2.3 years.

Patients’ nutritional status was assessed using two different criteria: body mass index (BMI; kg/m2), and body composition measured by bioelectrical impedance analysis (BIA) — a technique that allows researchers to estimate body composition, especially fat content, by calculating the resistance posed by body tissues to the passage of an electrical current.

Lung health was analyzed by spirometry, a common test based on the amount of air a person can inhale and quickly exhale.

Investigators analyzed a total of 147 spirometries and BIAs performed on 58 CF patients (median age, 30.1), who were divided into four groups depending on their BMI scores. These groups were set according to BMI the guidelines defined by the World Health Organization (WHO), were: malnutrition (less than 18.5 kg/m2), normal weight (18.5–24.9 kg/m2), overweight (25.0–29.9 kg/m2), or obese (more than 30 kg/m2).

Data showed that malnourished patients (27.6%) had a significantly poorer in lung function than those of normal weight (63.8%) or overweight (8.6%), as measured by the percentage of forced expiratory volume in one second (FEV1% predicted, 57% vs 77%), and the percentage of maximum vital capacity (percent predicted, 62% vs 75%).

Investigators also found that lung function measured by FEV1% worsened over time in malnourished patients (decreasing by up to 15%), unlike normal weight and overweight individuals. In these patients, FEV1% remained stable throughout the observation period (median of 10.3 months).

Further analysis also showed that the ratio of extracellular mass (ECM) over body cell mass (BCM), as measured by BIA, accurately predicted lung function over time in CF transplant recipients, suggesting that BIA is superior to BMI in predicting patients’ pulmonary function.

The team concluded “nutritional status assessed by BIA predicted lung function in CF transplant recipients,” and suggested that “BIA represents a non-invasive, safe, fast, mobile, and easy-to-use procedure to evaluate body composition. Thus, it may be used in everyday clinical practice and bears the advantage of repeatability at every patient follow-up.”

The researchers also emphasized the importance of multidisciplinary patient care provided by dietitians and gastroenterologists to try and prevent or diminish malnourishment in CF patients, and so help preserve lung function after a transplant.

Original article here. 

Third Annual CF Roundtable Gratitude Dinner

On October 17th, during the NACFC conference in Denver, CO, CF Roundtable (USACFA) hosted a dinner event honoring 68 social workers and other CF Care team members.

It was hosted by our very own Beth Sufian, JD and an informative presentation was given by Isabel Stenzel Byrnes.

The evening ended with a Gratitude Ceremony recognizing the importance of the CF team members to the health and well being of people with CF. Many attendees said the evening was the highlight of their attendance at NACFC.

Halloween themed goodie bags were handed out to each attendee, which contained a tote bag, with a lung design created by our talented director, Ella Balasa.

A big thanks to everyone who attended!

We have a limited number of totes remaining. This #givingtuesday be one of our first donors and you can recieve one of our very limited edition totes when you donate $100 or more to CF Roundtable! First come, first served basis!