Jerry Unplugged: A blog by Jerry Cahill
Six years ago, on April 18, 2012 I received the ultimate gift – a healthy set of lungs.
This is my transplant story and finally, an open letter to my donor Chris who gave me a second chance at life.
On April 17th I was called to Columbia University Medical Center (CUMC) in New York City. They had a perfect set of lungs on paper for me and simultaneously while I was on my way in, a team went to harvest and evaluate these lungs, which were located out of state. It’s a bit of coordination for the doctors to determine the health of the lungs. Were they damaged? Were there contusions or other imperfections? Were these lungs meant for me? The team at CUMC would make the final decision on whether they were a match or not. It was the sixth time that I’d been called in for the transplant, so I wasn’t getting too excited, but I also didn’t let myself get too down. This time the news was good – the transplant was a go! Before I could blink, my team began to prep me. My worn out, diseased lungs were about to be replaced with clear, healthy lungs. My life was about to be forever changed.
Before I went into surgery, my lung function was at a dismal 19% and I spent eighteen hours a day pumping myself with medications and intravenous antibiotics to stay alive. This wasn’t me. I was a coach, an athlete and an advocate for living a healthy life with cystic fibrosis. This wasn’t healthy! My quality of life was non-existent, and quite frankly, I was embarrassed each time I struggled to walk up a flight of stairs.
As I was wheeled into the operating room, I remember saying to my family, “Go into the waiting room and wait. I’ll see you later.” What was I thinking?
When I woke up I truly was a changed man. It was a foreign feeling for me to have clear lungs and when I took my first breaths I told my surgeon, “these lungs are too big – I think you stuffed them in.” This wasn’t a joke, I was being serious. I was grateful and knew this wouldn’t just be a second chance at life for me, but for my donor Chris. We were in this together now.
The last six years have been quite a journey – and that’s very much how I view life – as a journey. I’ve written letters to my donor’s family each year, but they haven’t responded yet. I wholeheartedly respect their decision, but I felt strongly compelled to write an open letter to this amazing man Chris, who saved my life.
To read Jerry’s letter to Chris, please click here.
by- Market Insiders, PR Newswire
“The Air Next uses Bluetooth Low Energy, which is a more efficient and cost-effective form of wireless technology, to instantly forward this data from the spirometer to a smartphone or tablet.”
If you’re like me and you very much dislike the extra ten seconds it takes out of your day to write down and journal your spirometry numbers, keep reading. And too, if you’re like me and you forget to bring that journal sheet with you to your doctor to show him your numbers, fear not- you don’t even have to leave your house. Just share it through the cloud. Yes, I know… another cloud.
For those of us who have received a transplant– I believe you know this well. After your surgery you are to use spirometry everyday. Everyday. For a few reasons we are told. To check for rejection, if you’re spirometry numbers are declining. To see, for both personal and medical purposes where you live (what your baseline FEV1 is). Then if you want to brag and show someone. Me: “Look mom, I am taking care of myself. Today I went up 3%.”
It’s very important. My doctors use my home numbers as if I’m doing my PFT’s at their office.
And lastly, this new Air Next looks cool! It’s not like the one hospitals give you that looks like you’re blowing into a 1950’s portal, that’s designed like the inside of a pinball machine. Seriously, check this thing out!
To keep reading visit the article below; also make sure to check out the images:
AB569, Arch Biopartners’ treatment candidate for bacterial infections in patients with cystic fibrosis, chronic obstructive pulmonary disease (COPD), and other respiratory conditions, has received a U.S. patent.
The U.S. Patent and Trademark Office issued patent 9,925,206 to the University of Cincinnati, which granted Arch Biopartners an exclusive commercial license on all patents related to AB569. The inventor is Daniel Hassett, PhD, a principal scientist at Arch and professor at the University of Cincinnati College Of Medicine.
“This patent issuance, which protects the composition of AB569, gives Arch a stronger commercial position to pursue treating not just CF patients, but also the millions of other patients that have chronic antibiotic resistant lung infections including those with COPD,” Richard Muruve, CEO of Arch, said in a press release. “It also opens the door for Arch to develop treatments for many other indications where antibiotic resistance is a problem, such as urinary tract infections and wound care.”
Bacterial infections in the lungs are a serious problem in patients with CF, COPD, or ventilator-associated pneumonia. Cystic fibrosis patients are susceptible to bacterial respiratory infections as a result of abnormal mucus production in the lungs and airways.
In particular, the bacterium Pseudomonas aeruginosa (P. aeruginosa) affects most adult CF patients and 40 percent of CF children ages 6 to 10. The mucoid form of P. aeruginosa is highly resistant to conventional antibiotics and immune-mediated killing. It causes a rapid decline in lung function and a poor overall clinical prognosis.
Antibiotic use in the treatment of CF and COPD patients with chronic bacterial respiratory infections is increasing, which correlates with a higher prevalence of antibiotic-resistant strains.
AB569 is a non-antibiotic therapy made of sodium nitrite and ethylenediaminetetraacetic acid (EDTA), two compounds approved by the U.S. Food and Drug Administration (FDA) for human use. The treatment has a different mechanism of action from antibiotics that may increase effectiveness, Arch believes.
“AB569 has two active ingredients that produce a dramatic and synergistic effect at killing many antibiotic resistant bacteria including Pseudomonas aeruginosa (P. aeruginosa), which commonly causes severe chronic infections in the lungs of cystic fibrosis (CF) and chronic obstructive pulmonary disease (COPD) patients,” Hassett said. “AB569 has the potential to make a significant medical impact on treating infection where traditional antibiotics fail.”
In preclinical experiments, the therapy showed significant ability to kill several types of Gram-negative and Gram-positive bacteria.
The safety and pharmacokinetics of a single administration of nebulized AB569 are now being evaluated in a Phase 1 clinical trial with up to 25 healthy volunteers at the Cincinnati Veterans Affairs Medical Center (CVAMC). Pharmacokinetics refers to how a drug is absorbed, distributed, metabolized, and expelled by the body. Enrollment of volunteers started in February.
If the Phase 1 study provides positive results, the company plans to start a Phase 2 trial to test the effectiveness of AB569 in the treatment of chronic lung infections caused by P. aeruginosa and other bacterial pathogens in CF and/or COPD patients.
For original article, click here.
By: Diogo Pinto
Researchers have linked variations in the mix of microorganisms in cystic fibrosis patients’ airways to their disease outcomes.
The findings in the journal PLOS One were in an article titled “Fluctuations in airway bacterial communities associated with clinical states and disease stages in cystic fibrosis.”
CF patients typically have particular strains of bacterial and fungus in their airways. The usual bacteria suspects include Pseudomonas, Achromobacter, Burkholderia, Haemophilus, Staphylococcus, and Stenotrophomonas.
Other bacteria and fungi also inhabit CF patients’ airways, however. These include anaerobic species that do not need oxygen to grow and spread.
Not only do the microbial communities in CF patients’ airways vary by type of microorganism, but also in the relative abundance of each species.
Researchers decide to see if the prevalence and relative abundance of typical CF pathogens and anaerobic microorganisms play a role in the severity of patients’ disease and their lung function.
They analyzed 631 sputum samples collected over 10 years from 111 patients.
The team classified the stage of patients’ disease on the basis of their lung function scores. The yardstick they used was forced expiratory volume in one second, or FEV1. They considered an early stage of the disease to be an FEV1 score higher than 70, an intermediate stage a score of 40 to 70, and an advanced stage a score lower than 40.
Researchers classified disease aggressiveness — mild, moderate or severe — on the basis of change in FEV1 relative to age.
They discovered a link between variations in the prevalance of the six typical CF pathogens, plus nine anaerobic species, and changes in a patient’s disease stage and lung function.
To continue reading, click here.
Singapore — Proteostasis Therapeutics, a clinical stage biopharmaceutical company dedicated to the discovery and development of ground-breaking therapies to treat cystic fibrosis (CF) and other diseases caused by dysfunctional protein processing, announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track Designation for the Company’s triple combination program for the treatment of cystic fibrosis. The Company’s proprietary triple combination includes a novel cystic fibrosis transmembrane conductance regulator (CFTR) amplifier, third generation corrector and potentiator, known as PTI-428, PTI-801 and PTI-808, respectively. The Company announced in January that the protocol for its triple combination clinical study, which the Company plans to initiate in the current quarter, has received endorsement and a high strategic fit score from the Therapeutics Development Network (TDN) and the Clinical Trial Network (CTN), the drug development arms of the Cystic Fibrosis Foundation (CFF) and the European CF Society (ECFS), respectively.
“Fast Track designation represents another positive step for the development of our triple combination therapy and underscores the serious unmet need that remains for the vast majority of CF patients,” said Meenu Chhabra, president and chief executive officer of Proteostasis Therapeutics.
The FDA’s Fast Track program is designed to facilitate the development and expedite the review of new drugs that are intended to treat serious or life-threatening conditions and that demonstrate the potential to address unmet medical needs. An investigational drug that receives Fast Track program designation is eligible for more frequent communications between the FDA and the company relating to the development plan and clinical trial design and may be eligible for priority review if certain criteria are met.
To read original article click here.
By Francesca Lucca, Margherita Guarnieri, Mirco Ros, Giovanni Muffato, Roberto Rigoli, and Liviana Da Dalt
Below is a study hoping to define and answer the questions of Pseudomonas aeruginosain, its evolution and the resistance from different antibiotics. The study took place between 2010-2013. Though the study may have some time clauses I believe there are some strong findings for the CF community moving forward.
Pseudomonas aeruginosa is the predominant pathogen responsible of chronic colonization of the airways in cystic fibrosis (CF) patients. There are few European data about antibiotic susceptibility evolution of P aeruginosa in CF patients.
The aim of this study is to evaluate the evolution of antibiotic resistance in the period 2010‐2013 in CF patients chronically colonized by P aeruginosa and to highlight the characteristics of this evolution in patients younger than 20 years.
Clinical and microbiological data were extracted from two electronic databases and analyzed. Antibiotic resistance was defined according to European Committee of Antimicrobial Susceptibility Testing for levofloxacin, ciprofloxacin, meropenem, amikacin and ceftazidime. The between‐group comparison was drawn with the Chi‐square test for proportions, with the T‐test for unpaired samples for normally distributed data and with Mann‐Whitney test for non‐normally distributed data. Significancy was defined by P < .05.
Fifty‐seven CF patients, including thirteen subjects aged less than 20 years, were enrolled. P.. aeruginosa antibiotic sensitivity decreased significantly for fluoroquinolones, mainly in patients aged <20 years, while it increased for amikacin and colistin. The analysis of minimum inhibitory concentration confirmed these trends. In pediatric patients treated with more than three antibiotic cycles per year, greater resistance was found, except for amikacin and colistin.
An evolution in P aeruginosa antibiotic resistances is observed in the 4‐year period studied. Responsible and informed use of antibiotics is mandatory in CF.
Read the whole clinical journal here.
Antibiotic resistance evolution of Pseudomonas aeruginosa in cystic fibrosis patients (2010‐2013) Francesca Lucca,Margherita Guarnieri,Mirco Ros,Giovanna Muffato,Roberto Rigoli,Liviana Da Dalt. First published: 1 April 2018. https://doi.org/10.1111/crj.12787