Cathy Bray RRT, BSRT
Rehab Liasion @ HealthSouth
Topic: Update on
Lung Disease Management
REFRESHMENTS PROVIDED by
ALL BREATHMATTERS MEETINGS ARE FREE AND ARE OPEN TO THE PUBLIC
ALL TALKS INCLUDE A
QUESTION AND ANSWER PERIOD.
Speaker: Darrel Bowe, CRT
Program Director for Med Inc. & COPD 360
Topic: Trilogy - The Treatment for
COPD patients with Chronic Respiratory
REFRESHMENTS PROVIDED by
ALL BREATHMATTERS MEETINGS ARE FREE AND ARE OPEN TO THE PUBLIC
ALL TALKS INCLUDE A
QUESTION AND ANSWER PERIOD.
Speaker: Dan Bayliss
RN, MS, CES from
Topic: Importance of Exercise
Speaker: Erik Larsen
Clinical Education Manager Genentech
Topic: Safety and Efficacy of Pirfenidone for IPF
Speaker: Gwen Reed-Blankenship
Topic: Grief counseling
Gwen Reed, LCSW, AHPC-SW is a Licensed Clinical Social Worker, an Advanced Hospice and Palliative Care Social Worker and the Bereavement Coordinator at the Bon Secours Bereavement Center.
She received her Advanced Standing Masters in Social Work at V.C.U. in 1993 and her Bachelors of Social Work at Eastern Mennonite University in 1985. She started hospice work in Pennsylvania, when the field was in its infancy and has since counseled grieving families for over 25 years. Gwen supervises Masters level Interns and licensure candidates and does guest teaching for VCU social work classes.
Gwen finds it meaningful to guide others as they transform sorrow into new strengths, like the Phoenix rising from the ashes.
Annual Holiday Luncheon and Celebration!
This event sponsored by
Dr. Max Weder, Medical Director VCU
Associate Professor of Medicine
Topic: Lung Transplants, Recipes for Success
Dr. Max Weder, Medical Director VCU Associate Professor of Medicine Topic: Lung Transplants, Recipes for Success
He is the attending physician for pulmonary hypertension. He is also the associate professor of medicine at the University of Virginia specializing in lung transplants at one of Virginia’s top hospitals. He comes to us from Humboldt University in Berlin Germany. He completed his postgraduate education at Tulane University and his fellowship at the University of North Carolina At Chapel Hill.
He Teaches, he does research, he has presented at conferences, He is published in books, magazines, and referenced in several medical Journals.
He is married to Uta Erdbruegger MD and they have three children, Jakob, Anton and Paul all were born on February 26, 2007 triplets!!! We are very fortunate to have him.
He is here today to talk about "Lung Transplant - Recipes for Success".
Russell Glover was the original President and Facilitator at Breath Matters Support Group
Speaker: Dr. Steven Nathan, MD, FCCP, Medical Director, INOVA Lung Transplant Program
Topic: The Relationship Between IPF,
New Meds, & Transplants
Biography Steven D. Nathan, MD
Steven D. Nathan, MD, is the Director of the Advanced Lung Disease Program and the Medical Director of the Lung Transplant Program at Inova Fairfax Hospital in Falls Church, Virginia. He is also a Professor of Medicine at Virginia Commonwealth University- Inova Fairfax Campus. Dr. Nathan received his medical degree at the University of the Witwatersrand Medical School in Johannesburg, South Africa. He completed his internship in Internal Medicine and General Surgery at the Johannesburg Hospital. Dr. Nathan performed his Internal Medicine residency at Long Island Jewish Hospital in New York City, and completed his fellowships in Pulmonary Medicine, Critical Care, and Lung Transplantation at Cedars-Sinai Medical Center in Los Angeles, California. He is board certified in Internal Medicine, Pulmonary Diseases, and Critical Care Medicine.
Dr. Nathan has over 340 publications including original research manuscripts, abstracts, reviews, book chapters and a book on IPF which he co-edited. Dr.Nathan is a reviewer for multiple journals and is an Associate Editor for the journal, Thorax. He has served on multiple committees, including FDA Advisory Boards as well as steering committees for clinical trials in IPF and pulmonary hypertension, where he has also served as chair. He is also chairperson of Pilot for IPF, an International educational initiative for Pulmonary Fibrosis. Dr.Nathan is a member of several professional medical associations, including the American Thoracic Society, the American College of Chest Physicians and the International Society for Heart and Lung Transplantation. He has delivered talks and been chair of numerous sessions at many national and international conferences.
TOPIC: Lung Transplantation for
End Stage Lung Diseases i.e.
Sarcoid, C.O.P.D., C F, LAM
Shawn Floyd spoke at the August 10, 2015 meeting of Breath Matters. Mr. Floyd began with a brief overview of the history of lung transplants which began with Dr. James Hardy performing the first human lung transplant operation in 1963 in Jackson, Mississippi.
The development of the technique and the success rate of the operation over the decades was covered. Mr. Floyd then discussed how candidates are chosen and what is expected for the recipient, such as:
Mr Floyd also discussed the factors which might prevent a person from being eligible for transplant, such as:
The entire presentation was video recorded and is online at the Breathmatters You Tube Channel
TOPIC: ACID REFLUX & its
Relationship With C.O.P.D. and Pulmonary Fibrosis
Janet Pinson spoke at the July 2015 meeting of Breathmatters about acid reflux and how it particularly effects lung disease sufferers.
She described the symptoms of acid reflux, such as chest pain (sometimes severe, enough to be mistaken for a heart attack), bitter taste in the back of the throat, trouble swallowing, feeling of "stuck" food in the throat, and discomfort in the throat or esophagus when the body is in various reclined or relaxed positions.
Described also was the process of the onset of the acid reflux condition, the irritation of the throat and the causes, from nasal drip to food choices, smoking and other factors. For example the following food and drink are often associated with acid reflux:
Janet Pinson also spoke about how acid reflux occurs through a weakness in a particular throat muscle, a sphincter which is meant to keep stomach acids from entering the throat but through various causes may not be performing this task adequately, thereby allowing stomach acid to enter and irritate the esophagus.
Discussed were solutions and treatments for acid reflux, and how combined treatment is often needed for COPD sufferers who are experiencing acid reflux discomfort. Also discussed was pulmonary fibrosis and acid reflux as joint conditions.
Besides the various drug treatments available, diet and strategic sleeping patterns were suggested as straightforward ways to combat acid reflux. As the stomach can take three hours to empty after eating (longer for diabetic sufferers), horizontal body positions for sleeping should be avoided until the digestive process has accomplished the removal of food from the stomach.
Frequent questions and answers were handled during the course of the meeting.
Discussion included a general survey of costs for varieties of assisted care facilities, types of living arrangements, staying at home costs, and the dilemma of working with medicaid and medicare when facing after care costs.
1:15 to 3:00 PM
Mobility is important!
Sherry Wilson came to speak at the May 11 Breathmatters meeting. She spoke about the challenges of maintaining or reclaiming mobility after hospitalization or while battling debilitating ailments.
Sherry spoke specifically about utilizing power chairs, scooters, lifts and wheel chairs. She also spoke about the importance of shower chairs and how beneficial they can be when mobility has been reduced.
Drawing from her vast experience with helping people in the Richmond, Virginia area, Sherry Wilson described how the F.R.E.E. Foundation makes it possible for those who have suffered a loss of mobility to receive the appropriate equipment at no cost to create mobility.
"Sleep Apnea - The Unknown Danger Everyone Should Fear"
The April 13, 2015 meeting with Professor Adrian Aron was an examination of Sleep Apnea and the impact it has on COPD and a variety of other lung and health problems.
Discussed during the presentation was how sleep apnea can exasperate diabetes, hypertension, and cause blood pressure issues.
Professor Aron described how sleep apnea is often not recognized immediately but can sometimes be found through symptoms like:
Daytime fatigue or drowsiness
Decrease in intellect
Behavioral and personality changes
Left untreated, sleep apnea can result in a myriad of health issues, such as:
Cardiovascular morbidity and mortality
Professor Aron described the different kinds of tests done to detect sleep apnea, and treatment methods, in particular the usage of CPAP sleeping masks.
Dr. Will J. Voelzke discusses how Lung Cancer is a serious ailment in the United States, with an estimated death rate at over 150,000 persons per year, with approximately just over 200,000 new cases per year.
Dr. Voelzke talks about the two main types of lung cancer, "small cell" and "non-small cell."
Also discussed are current research developments, such as genome-sequencing, which is having a major impact on treatment methods. Maintenance chemotherapy is discussed, with a brief historical overview and the current changes in methods.
"The Lazarus" like recoveries that happen in immune therapy is mentioned, particularly in regards to Melanoma and renal cell cancer.
Also discussed are mutations over the course of a cancer cycle and what that means during treatment.
Video recorded live at the February 9, 2015 meeting of Breath Matters Lung Disease Support Group in Richmond Virginia.
Overview of Clinical Trials
The January 12, 2015 meeting with Annette Bennett was an informative session with plenty of questions and answers from the audience. The presentation covered special areas of concern for lung disease sufferers. Discussed also was participation in clinical trials, the ongoing development of new treatment methods and drugs, and the peculiar needs that lung disease sufferers have with new (and old) medicines.
View the first part of the meeting online via youtube.
Annette Bennett, the C.E.O. and Research Director at Clinical Research Partners presents an overview of how clinical trials are conducted, who can participate, the advantages and disadvantages of getting involved. Annette Benning also discusses the value of clinical trials to lung disease suffers, and the variety of drugs and treatment methods that are developed, and being developed, for the benefit of those suffering from chronic lung disease.
Much of the presentation contains questions and answers from the audience, and personal anecdote and experience informs the conversation concerning clinical trials and the medicines discussed.
Recorded live at the January 12, 2015 meeting of Breathmatters, at Chippenham Hospital in Richmond, Virginia.
Annette Bennett follow-up video from the Feb 2015 Breath Matters Meeting.
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 firstname.lastname@example.org.
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.
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
Contact Susan J. Keen,
RN, OCN at
CJW Med Center
email: Susan.Keen [at] hcahealthcare.com