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

News on new drug to treat B. Cepacia

https://cysticfibrosisnewstoday.com/2017/07/31/synspira-snsp113-may-be-game-changer-cf-cystic-fibrosis-drug-resistant-bacteria/

Originally published on Cystic Fibrosis Today Website 7/31/17
By Reid D’Amico

Synspira’s CF Therapy May Be Game-Changer for Drug-Resistant Bacteria

Chronic pulmonary infections are a hallmark of lung disease in patients with cystic fibrosis. Due to the variability in bacteria that can colonize the lung and Continue reading News on new drug to treat B. Cepacia

New Drug Improves Effectiveness of Antibiotics against Drug-resistant Bacteria

Synspira’s Novel Glycopolymer Improves Effectiveness of Antibiotics Against Drug-resistant Bacteria Associated with Cystic Fibrosis

Synspira, a privately held company developing a new class of inhaled glycopolymer-based therapeutics for the treatment of pulmonary disease, Continue reading New Drug Improves Effectiveness of Antibiotics against Drug-resistant Bacteria

Cystic Fibrosis Step by Step: Building a Treatment Routine

In this video, Gunnar stresses the importance of building a routine in order to stay compliant with his treatments and remain healthy. He also reminds listeners to keep an open dialogue with their doctors and support teams at CF Clinics. Continue reading Cystic Fibrosis Step by Step: Building a Treatment Routine

The things we do for the hospital

Ironically I had this post planned for the end of January but as I mentioned in my last post I caught the flu and needed to be hospitalized.  So this post got pushed back and I got to try out the things I posted in it.

Though most of us don’t let CF define us, there are times when it does dictate our lives.  Sometimes it can be as big as not advancing in our career because we Continue reading The things we do for the hospital

That is NOT pity worthy IMO

By Amy Braid

I’m currently inpatient getting IV antibiotics. I caught the flu a few weeks ago and as per the course it wreaked havoc on my lungs. But after a week I’m feeling better already and counting down to discharge day.

Continue reading That is NOT pity worthy IMO

Making it Matter Ep. 24 – Dealing with Disease Progression

Julia and I take a question from my most recent Facebook Live on the Boomer Esiason Foundation page, which asks about the progression of cystic fibrosis and how we deal with it.

Since cystic fibrosis is a progressive disease, it can take an emotional Continue reading Making it Matter Ep. 24 – Dealing with Disease Progression

Patients with Severe Chronic Rhinosinusitis Show Improvement with Verapamil Treatment

http://www.newswise.com/articles/view/668018/?sc=mwhn

A clinical trial studying the use of Verapamil (a drug currently in use for cardiovascular disease and cluster headache) in alleviating chronic rhinosinusitis (CRS) with nasal polyps revealed significant improvement in the symptoms of this subset of patients. It is the first study of its kind to explore Continue reading Patients with Severe Chronic Rhinosinusitis Show Improvement with Verapamil Treatment

Pitt study links cystic fibrosis lung inflammation to opportunistic bacteria

http://www.bizjournals.com/

An investigation led by the University of Pittsburgh School of Medicine has found a link between a new class of bacterial enzymes and the chronic lung inflammation that plagues patients with cystic fibrosis, a terminal lung Continue reading Pitt study links cystic fibrosis lung inflammation to opportunistic bacteria