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. 

Harmful Bacteria Replace Beneficial Ones in Gut of CF Patients

By Vijaya Iyer

Cystic fibrosis (CF) patients have a higher amount of harmful gut bacteria and increased levels of intestinal inflammation than healthy people, according to researchers.

Their study, “Altered intestinal microbiota composition, antibiotic therapy and intestinal inflammation in children and adolescents with cystic fibrosis,” was published in the journal PLOS One.

CF predominantly affects the lungs, but it can also cause gastrointestinal complications. The CFTR protein defect (the cause of CF) is abundant in the gastrointestinal tract of patients and affects the normal structure of the intestine. This defect could influence the diversity of the bacteria present in the gut (also called the gut microbiome). Continue reading Harmful Bacteria Replace Beneficial Ones in Gut of CF Patients

Omega-3 Compound Reduces Inflammation in Cystic Fibrosis Patients in New Pilot Study

By Jennifer Prince

A marine omega-3 compound comprising a docosahexaenoic acid (DHA) sn1-monoacylglyceride (MAG-DHA) may act as an anti-inflammatory for subjects with cystic fibrosis, according to a new pilot study1 published in the journal Marine Drugs. In the study, MaxSimil (Neptune Wellness Solutions; Laval, QC, Canada) increased omega-3 red blood cell levels, helped moderate the ratio of arachidonic acid (AA) to docosahexaenoic acid, and reduced key inflammatory biomarkers in subjects with cystic fibrosis. Continue reading Omega-3 Compound Reduces Inflammation in Cystic Fibrosis Patients in New Pilot Study

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?

Only I Can Look Into My Mirror

Guest Blog By: Brennen Reeves

If I were to count all of the scars on my body, the ones visible to a bystander at the beach, I’d need your fingers and toes, plus mine. And someone to mark the tallies. Thirty-eight. I’ve counted. From my chest, to my stomach, up to my neck, and down to my ankles the grooves are endless it seems. I don’t think I have any on my back but then again I cannot see my back and I still have trouble with sensation from the bilateral lung transplant I received in 2011, so I wouldn’t be able to feel them either. Continue reading Only I Can Look Into My Mirror

Cystic Fibrosis Podcast 176: Importance of Nutrition for CF Patients

In this podcast, we meet Molly Bigford, a Registered Dietitian for the Adult Cystic Fibrosis Care Team in Grand Rapids, Michigan. Born and raised in Michigan, Molly began working with hospitalized adult patients with cystic Continue reading Cystic Fibrosis Podcast 176: Importance of Nutrition for CF Patients

Green Smoothie Recipe – Healthy and Caloric!

By Ella Balasa

Rise and shine to start another day! Like most of us, I have limited time in my morning routine, AND I tend to slack on getting my greens for the day. Occasionally, I will eat a salad with my lunch or dinner, but that isn’t enough. The saying also goes… an apple a day keeps the doctor away…That’s definitely something we as CF patients want! Continue reading Green Smoothie Recipe – Healthy and Caloric!

Making it Matter Ep. 16

Making it Matter Ep. 16 – Football and Cystic Fibrosis

Making it Matter this week is Matt Mitchell, a freshman in college with cystic fibrosis, who joins the podcast today to talk about his career as a football player. Matt was a stand out player in high school at Joy Christian Continue reading Making it Matter Ep. 16

Making it Matter Ep. 14

Making it Matter Ep. 14 – Advocacy and Other Things

After our week off, Julia and I come back with lots to talk about. Right after her NYC marathon effort, Julia shipped off to Europe to tour a children’s CF center in the Netherlands. She talks about how much different care is than Continue reading Making it Matter Ep. 14

Trying to Reduce Inflammation for Myself

By Amy Braid

A couple of weeks ago Andrea posted this blog about her experience with going gluten free.  She read a book called Wheat Belly by William Davis MD.  She talked about how much better her joints feel having tried this.   It sounded great!

Continue reading Trying to Reduce Inflammation for Myself