The care of patients with Cystic Fibrosis (CF) has seen amazing advances in the past few years, made in part through the development of CFTR modulators. However, the recognition of the frequency of gastrointestinal (GI) symptoms in our patients is just beginning to emerge. Only recently have publications noted the excessively high frequency of GI issues. Continue reading Advancing the GI frontier for patients with CF
Cystic fibrosis care has seen such rapid advances that the average CF patient has experienced a dramatic evolution in treatment strategies in their lifetime. Here are some of the biggest milestones that shaped modern-day CF treatments.
Anthera Pharmaceuticals Announces RESULT Phase 3 Clinical Study of Sollpura will be Included in the European Cystic Fibrosis Clinical Trial Network
Anthera Pharmaceuticals (Nasdaq:ANTH) today announced that the RESULT Continue reading Results for Phase 3 Clinical Study to Treat Exocrine Pancreatic Insufficiency
Countries including India, China, Nigeria, Pakistan and Indonesia, accounted for over 16 million or half of the global estimated cases of a fatal lung infection called Respiratory Syncytial Virus (RSV) in 2015, researchers led by Continue reading More Than 16 mn Fatal Lung Infections in 2015! Know these 5 Foods to Keep Your Lungs Strong
By Ella Balasa
Living alone has its perks and its downsides too. It can get quiet at times. There isn’t someone’s presence here constantly. The upside is having the flexibility of doing what I want on my own time. Although I have recently come to realize, more responsibility means less free time to do whatever I want whenever. Having CF, this means a lot more responsibilities. Many young adults are living with their parents through their early 20s. This is something I did as well, and have recently made the transition to being on my own. There are a few things I have learned so far:
Time management is important. I have to think through my day before it happens. Fitting in 3-4 breathing treatments a day is an absolute must, so everything else I do in a day has to be worked around when I do those. I have to think about when I need to do certain things to be able to get places at certain times and to accomplish what I need to do in a day. Nutrition is also extremely important, and to make sure I’m having healthy meals, not grabbing take-out on the way home or out, pre-planning meals is something I have to think about. For example, taking something out of the freezer the night before, so I can prepare it in a crockpot the next morning to be ready to eat by that evening. When I plan things I am able to accomplish more, in a more efficient way.
I’ve learned the meaning of discipline. This goes along with time management. There are times where I can’t go meet up with a friend because I need to be home doing treatments, cleaning nebulizing vials (we all know how tedious and annoying this can be) grocery shopping or taking care of other responsibilities. I no longer have my parents nagging me and reminding me to do tasks that I need to complete. I have to take the initiative and do without being told.
I have a greater appreciation for my parents. I now realize how much my mom did for me. Mostly cooking meals, cleaning the house, taking out the trash, and just her caring nature. When she would randomly bring me a snack as I typed away at my computer. It’s the little things like that I miss the most.
Freedom. This is the best positive aspect to the whole situation. I do love feeling the sense of independence and accomplishment that comes with figuring things out on my own, planning my days, and getting things done in the time they need to be. I wouldn’t trade it. It is nice to not have constant reminders from parents and nagging about things I’m doing wrong or what I should be doing. And I feel proud that I am able to live my own life despite the extra daily challenges.
Although it is more work to be responsible for myself, I think it’s a very important step for young adults including those with CF. Parents of children with CF can be quite overprotective and may have a harder time letting go and allowing young adults to manage their own lives. It teaches responsibility and discipline and in the long run is beneficial for CF adults as they are better prepared to take on more obstacles and challenges with managing life with CF.
Because CF has so many moving parts, it is important to keep all medications and treatments organized.
To read Gunnar’s blog, please visit www.gunnaresiason.com. Continue reading Cystic Fibrosis Step by Step: Organizational Needs
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!
By Meranda Sue Honaker
Gastroparesis (delayed gastric emptying) is a common complication for many with CF; however, the condition is exceptionally hard to treat due to lack of promotility agents in the United States. In my early 20’s I began to experience Continue reading Gastroparesis and Cystic Fibrosis – By Meranda Sue Honaker
Making it Matter Podcast Ep. 10 – CF Nutrition
Nutrition is something I love to talk about (well…. ever since I got my feeding tube placed in 2011). It is a vital part of CF care, something that Julia and I approach differently. While my pancreas doesn’t seem to work, Julia knows she is Continue reading Making it Matter Podcast – CF Nutrition
By Amy Braid
As I mentioned last month, I read Wheat Belly by William Davis MD and decided to go gluten free for 30 days. Well my 30 days is up…
I felt no significant difference eating gluten vs not eating gluten. I did eat a lot more fruits and vegetables and yogurt which I loved. And I was hungry a lot more too. But I was eating lots more quantity. The first week or two I did feel less bloated after eating, and my wrist problems seemed to be diminishing. But I can’t say that for certain since I was not using it as much as I normally do either. By the time I hit the two week mark I felt exactly how I did before I started.
One thing that did change significantly…my fasting blood sugars. They were all in the normal range for those 30 days. But my post exercise blood sugars were awful. I crashed every single day I exercised, and that was 4-5 days a week. Not good.
I only cheated once. Hand to God I swear. It was the last week. We were going to my mother in laws for dinner, and since I make fresh bread a lot this time of year and , I made some the night before. I had to try a bite when it was finished! Just a small bite, and I didn’t have any at dinner the next day. And to be honest I didn’t feel anything negative side effects from sneaking a piece.
So for me I don’t think gluten has any noticeable impact on me. I was a little disappointed, I won’t lie. I did hope my lungs would feel better and my wrist would feel amazing and I would not bloat like a balloon with meals. The first 10 days or so I was excited that I might get there. But in the end, nothing. So it is back to gluten for me. But modified, I will eat less, avoid all the snacks and processed foods (for the most part) and try to maintain the healthy fruits and veggies I was eating for that month.
All in all I don’t think this experiment was a total bust. It was a learning experience and I tried some new foods I didn’t think I would like, and ended up loving them. So win win for me!