Ex Vivo Lung Perfusion for Transplant

Cystic Fibrosis Podcast 186:
In the latest edition of The Path Forward with Cystic Fibrosis, Dr. Frank D’Ovidio – the Surgical Director of the Lung Transplant Project and Director of the Ex Vivo Lung Perfusion Program at CUMC – explains exactly what the Ex Vivo program is and what its end goals are.
Because so many donor lungs are damaged at the time of death, only 20-30% of donated lungs are usable for transplantation. The ex vivo lung perfusion (EVLP) is a process of evaluating and preparing donor lungs outside the body prior to transplant surgery. In EVLP, the lungs are warmed to normal body temperature, flushed of donor blood, inflammatory cells and potentially harmful biologic factors, and treated with antibiotics and anti-inflammatory agents.
Eventually, as this process is perfected, it could expand the available donor pool by restoring and repairing donor lungs that have sustained damage and eventually create a sort of ‘ICU for organs.’

This video podcast was made possible through an unrestricted educational grant from Columbia University Medial Center and the Lung Transplant Project.

Virtually Very Cool Conferences

By: Mark Levine
One of the things I love about the CF Roundtable is how it brings the CF community together and is a forum for sharing stories. Stories, after all, are what life is about. So when I heard about CF virtual conferences, I had to learn more.
This past fall I attended my first BreathCon, a virtual conference for CF Adults organized by the the CF Foundation and a lot of volunteers. About two weeks ago, I participated in another virtual conference, a smaller one labeled a Mini-Con, which had the theme of Sexual and Reproductive Health. Yes, it was as interesting as it sounded like it should have been.
As a step-father of two, I was asked to facilitate a discussion on parenting. There were a lot of stories as well as some amazing tips and tricks that are wonderful to hear live. All of the conferences have a theme and they start off with a keynote address followed by break-out sessions (group discussions) with varying topics related to the theme. When I first signed up for one of these events, I had no idea how a virtual break out session would work but I have to confess… they are really cool.
The platform, or software, that is used is called BlueJeans and it allows people in a “room” to see and talk to each other using their computer or cell phone camera and microphone. Picture a Brady Bunch style screen layout and you get the idea.
Turns out that people with CF are pretty open about pretty much everything. There is a lot to be learned from others with CF and it is not only comforting to chat with people going through the same thing you are but also refreshing to hear a different perspective. I recommend getting on the mailing list for future conferences. The next one is scheduled for June.
Sign up by going to www.cff.org/virtualeventsYou will be happy you did. Until then, keep on creating those stories. I will see you online.
Mark Levine, 48, lives in Michigan with his wife Joelle and shared dog BamBam. Mark has two step-children, 23 and 21. He is on the board of and the subscription manager for the CF Roundtable.

 

 

 

CYSTIC FIBROSIS WIND SPRINT 68: CIRCUIT TRAINING 3

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF. Continue reading CYSTIC FIBROSIS WIND SPRINT 68: CIRCUIT TRAINING 3

Tips for Surviving a Holiday Admission

Guest Blog By: Lauren Jones Hunsaker

Most of us have had to suffer through a holiday admission at one point.  It’s a reality of our disease, which, for most of us, never made a habit of consulting our social calendars before burdening us with an exacerbation.  I’ve spent several Christmases, birthdays, wedding anniversaries and many-a-Thanksgiving admitted.  As far back as middle school, most of my holidays were spent in the hospital simply because it was an advantageous time for an admission.

It’s not an easy thing to endure for kids or adults.  On a good day, being in the hospital is boring, uncomfortable and tedious.  The holidays magnify our misery by adding self-pity and a serious case of F.O.M.O. to the litany of grievances.  However, there are a few easy things you can do to weather the emotional storm of a holiday admission:

  1. Make a To Do List. While a day of nothing but channel-changing can seem never ending, a daily to-do list can help compartmentalize your day and alleviate the monotony of an admission.  Reading, exercising, playing games or journaling at specific times can be helpful distractions and keep you from staring wistfully out of your window.
  2. Enjoy Holiday T.V. Ordinarily, I don’t watch a lot of television.  But during the holidays there are so many classic movies, parades and specials on, allow yourself to indulge in the holiday deluge.  If nothing else, it helps pass the time and connects you to the outside world (“Hey, did you catch It’s a Wonderful Life for the sixteenth time on NBC?”  “I sure did!” “I don’t really understand why ‘Hee Haw!’ is funny.” “Me either, but Clarence is my favorite.”).
  3. Schedule Holiday Events Post-Discharge. The holidays are the holidays because of family.  The pilgrims will not cast a pox on your house if you host Thanksgiving the following weekend so ask family members if they are willing to attend a second family gathering after your discharge.  This gives you something to look forward to and helps temper loneliness while your family memorializes turkey carving on Facebook Live.
  4. Try a Little Empathy. No one wants to be in a hospital on Christmas, including doctors, nurses and nurse’s assistants.  I know what you’re thinking – “they’re getting paid to be there.”    And so as to preempt your next argument, yes, some are getting paid a higher wage for working on a holiday.  But remember that many don’t have a choice in their work schedules, just as we don’t have a choice as to when we’re admitted.  Staff are away from their families and missing holiday gatherings so they can take care of patients.  Take a moment to tell a favorite nurse thank you for working on the holiday.  Sometimes making someone else feel better makes you feel better too.
  5. Order in a Special Meal. Diet restrictions permitting, indulge in a holiday craving (i.e., turkey with stuffing, Chinese takeout, multiple desserts).  Your doctors will love that you’re packing in some extra calories and it’ll give you a break from repetitious hospital food.
  6. Take Advantage of Tech. Twenty years ago, when we would emerge from an admission (shielding our eyes from the blazing sun, unaccustomed to human life), we had no idea what had occurred during our fourteen days of solitude.  Gone are the days.  With social media and constant connectivity, we rarely experience the same isolation we once did.  Use today’s technology to cyber-attend family events from afar—FaceTime into family dinner or Skype into religious celebrations.  Social media can sometimes (and ironically) exacerbate loneliness, but use its advantages to stay connected during the holidays.  Feeling included can boost morale and help you power through an admission.

Live Stream the North American CF Conference Tomorrow for Free!

The North American CF Conference (NACFC) provides a collaborative and educational forum for all CF professionals. The educational elements of the meeting program are targeted to physicians, nurses, research scientists, respiratory therapists, physical therapists, nutritionists, social workers, and pharmacists. Continue reading Live Stream the North American CF Conference Tomorrow for Free!

Hill-Rom Introduces New Monarch Airway Clearance System

New Airway Clearance Technology Designed to Improve Patient Lifestyles through Mobile Wearable Therapy

Continue reading Hill-Rom Introduces New Monarch Airway Clearance System

RespirTech Develops Novel Remote Monitoring System for Cystic Fibrosis Patients as Part of NIH Grant

http://www.businesswire.com/news/home/20160310005200/en/RespirTech-Develops-Remote-Monitoring-System-Cystic-Fibrosis

RespirTech, the nation’s fastest growing provider of Airway Clearance Therapy (ACT) vests, is introducing a novel way to remotely monitor the treatment of cystic fibrosis (CF) patients as Continue reading RespirTech Develops Novel Remote Monitoring System for Cystic Fibrosis Patients as Part of NIH Grant

Top 10 Cystic Fibrosis Articles of 2015 Highlights from the past year’s work in disease treatments, therapies and some personal stories

http://cysticfibrosisnewstoday.com/2015/12/28/top-10-cystic-fibrosis-news-stories-of-2015/

Originally from Cystic Fibrosis News Today, online

Cystic Fibrosis News Today has covered news of the latest treatments, events, clinical trials, and research updates in cystic fibrosis on a daily basis throughout the past year. As 2015 comes Continue reading Top 10 Cystic Fibrosis Articles of 2015 Highlights from the past year’s work in disease treatments, therapies and some personal stories

Gene therapy stabilizes lungs of cystic fibrosis patients

Continue reading Gene therapy stabilizes lungs of cystic fibrosis patients

UNC spinout looking to one-up Kalydeco with one-size-fits-all cystic fibrosis therapy

Cystic fibrosis has become the poster child for precision medicine – most new therapies are carefully tailored to a CF patient’s genetic makeup. University of North Carolina spinout Spyryx Biosciences is proposing a one-size-fits-all approach to the disease: It’s developing a peptide-based therapy that, in theory, could be effective among all CF patients. Continue reading UNC spinout looking to one-up Kalydeco with one-size-fits-all cystic fibrosis therapy