The Importance of
Sharing and Giving
ALL BREATHMATTERS MEETINGS ARE FREE AND ARE OPEN TO THE PUBLIC
Chippenham Medical Center
7101 Jahnke Road
Richmond, VA 23225
This event sponsored by
Topic: LUNG TRANSPLANTS: What UNOS is doing to Find Your Perfect Organ
Lisa Schaffner speaks at the Nov 2014 Breath Matters meeting at Chippenham Medical Center in Richmond, Virginia. She speaks on the topic of UNOS and its efforts to match life-saving organs between deceased donors and those on the national organ donation waiting list maintained by UNOS (United Network for Organ Sharing). UNOS works with important organs such as the heart, lungs, kidneys, pancreas, liver and intestines.
In particular, Lisa Schaffner speaks on lung transplants, how lungs are donated, how they are matched to people in need, and the pitfalls and difficulties of providing successful organ transplantation.
Recorded live at the November 2014 meeting of Breath Matters in Richmond Virginia at the Chippenham Medical Center, Kraus Auditorium.
“Today’s Ofev approval expands the available treatment options for patients with idiopathic pulmonary fibrosis, a serious, chronic condition,” said Mary H. Parks, M.D., deputy director of the Office of Drug Evaluation II in the FDA’s Center for Drug Evaluation and Research. “Providing health care professionals and patients with additional treatment options helps enable appropriate care decisions based on a patient’s need.”
The FDA granted Ofev fast track, priority review, orphan product, and breakthrough designations. Ofev is being approved ahead of the product’s prescription drug user fee goal date of Jan. 2, 2015, the date the agency was scheduled to complete the review of the drug application.
The presentation by Dr. Lori Sweeney was informative and covered many issues related to the thyroid and the effects on blood pressure. Also discussed was how gender effects lung disease, the effects of estrogen on lung ailments, and related problems with diabetes, obesity, blood vessel remodeling and vitamin D deficiency. Much more was brought up during her questions and answers.
"NIH-funded researchers are working to develop wearable “respiratory assist devices” that could do the lungs’ two jobs — supplying oxygen and getting rid of carbon dioxide — without tethering patients to a bulky bedside machine. It has been challenging.
“The lung is an amazing organ for gas exchange. It’s not so easy to develop a mechanical device that can essentially replace the function of a lung,” said bioengineer William Federspiel of the University of Pittsburgh Medical Center’s McGowan Institute for Regenerative Medicine, who helped invent a bedside device called the Hemolung and is working on next-step devices.
Donated lungs are in such short supply that only 1,923 transplants were performed last year, just 80 of them repeats, according to the United Network for Organ Sharing."
Full article at the Richmond Times Dispatch
The September 8, 2014 meeting was very well attended, we had a packed room to hear NP Janet Pinson.
Janet Pinson, NP, MCV Hospital Richmond Virginia Video taped at the Sept 2014 Breathmatters suport group meeting for lung disease sufferers at the Bosher Auditorium in Chippenham Medical Center, Richmond Virginia.
Discussed were the keys to Pulmonary Rehab Success, and the importance of exercise, in particular arm exercise.
Debbie Leidheiser spoke
Senior Advocate, Chesterfield County Virginia
TOPIC: Seeing Through the FOG of Senior Resources
The July 2014 meeting was held at Bosher Auditorium with a good crowd for a day that had intense July heat in the Richmond area. Ms. Leidheiser talked about the explosive growth of people aged 50 and older in the Richmond metro area, and how this growth is expected to increase as more people come to live in the Richmond area. Described in the presentation are the many programs and resources available for seniors.
The Richmond Virginia metro area is considered a highly desirable place for retirement and the infrastructure to support this population has increased considerably. Ms. Leidheiser describes the many tools available for better living for seniors in our area.
This note came into Breath Matters March 2014:
Russell, I have some news about idiopathic pulmonary fibrosis, and I'm hoping that you could distribute it to your group at Breath Matters.
Intermune is holding a press conference today that will show positive results from the most recent pirfenidone study. This will likely make it the first FDA approved treatment for idiopathic pulmonary fibrosis.
They will take their information to the FDA later this year, and the medication may be available by the end of 2014. For those in the group with idiopathic pulmonary fibrosis, we are participating in an "open access and early availability" study that will help Intermune with additional safety and tolerability data.
More importantly, it will give patients with IPF access to pirfenidone before it becomes FDA available. There is no placebo arm, everyone will get the medication who qualifies.
If anyone is interested, the study coordinator is Amy Frayser (804-828-7966). Thanks, Dan Grinnan
The Participation Program for Pulmonary Fibrosis (P3F) are currently recruiting pulmonary fibrosis patients (fibrosis of any etiology, not just IPF) to sign up for a Contact Registry as well as for a study in which we will examine the effects of daytime supplemental oxygen on a number of outcomes.
For our supplemental oxygen study, we are looking to enroll patients currently using supplemental oxygen and those likely to need supplemental oxygen in the next year or so.
We are asking for your help only to spread the word about this study to all the members of your support group. All data collection will occur either online or via mailings.
Packets containing a more detailed explanation of the study along with recruitment materials (e.g., flyers, business cards) are being mailed to you and should reach you in a few days.
We appreciate your time and attention, and we hope that you can help us by letting the members of your pulmonary fibrosis support network know about these exciting opportunities.
If you would like more information about the P3F, please check us out at www.PFresearch.org and follow us on Twitter at @DoctorSwig or email our Principal Investigator, Dr. Swigris, directly at email@example.com.
BLOODWORK IN YOUR HOME!
MEDALABS - are you homebound?
Medalabs of VA can come to your home to perform bloodwork and more! Results to your doctor quickly!
See a youtube online video that discusses Medalabs in the Richmond area.
Every Breath Counts
This new film about IPF looks at the lives of sufferers and the treatments that are being developed to combat the disease.
CHIPPENHAM MEDICAL CENTER
OCTOBER 13 - 1:30PM to 3:00 PM
This film will be shown in it's entirety on the Discovery Channel on Sept 13th and 27th at 8 A.M.
FastCap has donated 100 masks to BreathMatters. We are selling them for $3.00 which is FastCap’s retail. Pick one up at our next monthly meeting!
MORE INFO AT fastcap.com
LEARN MORE AT
THE IPF WEBSITE
PF is a relentlessly progressive, ultimately fatal disease that affects the lungs, gradually robbing an individual of their ability to breathe. In the U.S. more than 200,000 people are living with PF; 48,000 individuals are diagnosed with PF annually; and as many as 40,000 die annually (1 every 13 minutes). Public awareness of the disease remains very low; there is no FDA approved treatment or cure for the most common form of PF, idiopathic pulmonary fibrosis (IPF); and there is no national PF surveillance registry to collect data and which is critical to developing successful therapies.
PFREA Creates a National PF Surveillance Registry A registry would improve data collection and information sharing. This should enable research to move forward more expeditiously. The bills contain a provision for the creation of an Advisory Board of governmental agencies, patients and patient advocates, clinical experts and scientists, and others with expertise in PF. The Advisory Board will be responsible for developing the Registry. The Registry will expand upon existing data and will be made available to the NIH and the Department of Veterans Affairs. It will include relevant data, such as incidence and prevalence, environmental and occupational factors, individual demographics, and other relevant information.
Virginia Easy Access is the name of a website developed for seniors, adults with disabilities, their caregivers and the providers that support them. Virginia Easy Access is full of helpful information about services and supports that are available across the Commonwealth.
Website: Virginia Easy Access
Call the Facilitator!
Contact Susan J. Keen,
RN, OCN at
CJW Med Center
email: Susan.Keen [at] hcahealthcare.com
Chippenham Hospital of CJW is our largest supporter
Lincare, Rachele Clement, Representative