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A Dedication to Resourceful Living: A group approach to focus on what matters to the members of our community whose lives are impacted by chronic lung disease.

Breath Matters Virginia Lung Support Group

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COMING MONDAY AUG 10, 2015

SHAWN FLOYD

NP, Post Lungtransplant

SHAWN FLOYD Virginia Lung Transplantation

1:15 to 3:00 PM

TOPIC: Lung Transplantation for

End Stage Lung Diseases i.e.

Sarcoid, C.O.P.D., C F, LAM

ALL BREATHMATTERS MEETINGS ARE FREE AND ARE OPEN TO THE PUBLIC

Biosketch for Shawn Floyd DNPc, RN, ACNP-BC, CCRN, CCTC

Mr. Shawn Floyd started working with patients with lung diseases over 20 years ago. Mr. Floyd was a Respiratory Therapy Assistant at Riverside Regional Medical Center. After graduating with his Diploma in Nursing he has worked in medical, surgical, trauma, burn, and cardiac surgical intensive care units at multiple medical centers around Virginia. Always seeking a challenge Mr. Floyd went back to receive a Bachelor’s in Science from the Virginia Commonwealth University’s School of Nursing and a Masters in Nursing from the University of Virginia.

He is currently a Doctoral Candidate at the UVA School of Nursing and completing his studies in November 2015. Currently Mr. Floyd is working is a Nurse Practitioner at the University of Virginia Medical Center with a focus on post lung transplant patients.

Mr. Floyd see’s patients both on the inpatient hospital wards and in outpatient clinics. Mr. Floyd is also a clinical instructor of nursing in the Adult and Geriatric Acute Care Nurse Practitioner program at the University of Virginia’s School of Nursing and affiliated faculty at the Virginia Commonwealth University’s School of Nursing.

Directions and Map

MAP and DIRECTIONS

Chippenham Medical Center
7101 Jahnke Road
Richmond, VA 23225

REFRESHMENTS PROVIDED

DOOR PRIZES!
ALL TALKS INCLUDE A
QUESTION AND ANSWER PERIOD.

Directions and Map

MAP and DIRECTIONS

Chippenham Medical Center
7101 Jahnke Road
Richmond, VA 23225


This event sponsored by

LINCARE

2801 Ackley Ave, Richmond, VA 23228

(804) 355-2323

PAST MEETING: JULY 13, 2015

Janet Pinson speaking - Richmond VA July 2015

Janet Pinson speaking on acid reflux - July 2015

Janet Pinson speaking to Breath Matters July 2015

Janet Pinson

Janet Pinson Breathmatters talk on Reflux

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:

    • Alcohol
    • coffee
    • spicy food
    • chocolate
    • carbonated drinks
    • fried foods
    • peppermint
    • foods high in fat content

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.

View video recording of the meeting online:

JANET PINSON

(Nurse Pract.) & Attendee,
Pulmonology Department, MCV Hospital, Richmond, VA

Janet Pinson

1:15 to 3:00 PM

TOPIC: ACID REFLUX & its
Relationship With C.O.P.D. and

Pulmonary Fibrosis


PAST MEETING: JUNE 8, 2015

Joan Shifflett - Breathmatters Meeting Richmond VA June 2015

Joan Shifflett spoke at the June Breathmatters meeting about After Care for Lung Disease Sufferers, and about the general problems of identifying quality care service for patients, senior citizens and their families. Using her experience as a owner of Always Best Care Senior Services, she described the advantages and the possible pitfalls for patients dealing with medical issues coupled with a desire to stay in one's home for as long as possible, if not indefinitely when using the appropriate strategies.

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.

View video recording of the meeting online:

Joan Shifflett - Breathmatters Meeting Richmond VA June 2015Joan Shifflett - Breathmatters Meeting Richmond VA June 2015Joan Shifflett - Breathmatters Meeting Richmond VA June 2015


THE JUNE 2015 BREATHMATTERS MEETING

Speaker: Joan Shifflett

Joan SHifflett

Always Best Care Senior Services Owner/Care Coordinator

1:15 to 3:00 PM

TOPIC: New Options for
After Care with ANY LUNG DISEASE

 

MORE INFORMATION


PAST MEETING: MAY 11, 2015

Speaker: Sherry Wilson

Operations Assistant

F.R.E.E.- Foundation, Richmond Chapter

Topic: Making a Difference

1:15 to 3:00 PM

 

Sherry WIlson - Richmond FREE ChapterSherry WIlson - Richmond FREE ChapterSherry WIlson - Richmond FREE ChapterSherry WIlson - Richmond FREE Chapter

Sherry Wilson, FREE Foundation

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.

View video recording of the meeting online:

Sherry WIlson Richmond Virginia

Sherry Wilson is the Operations Assistant to the FREE-Foundation, Richmond Chapter. FREE is a non-profit organization that freely gifts used/like new Durable Medical Equipment to the community of Richmond and surrounding areas. F.R.E.E. stands for Foundation of Rehabilitation Equipment and Endowment. Sherry has been a part of this foundation for a little over two years. She brings a passion for the needs of her community and great zeal to fulfill the mission of FREE Foundation, which is to see every person in need of mobility and bathroom aide equipment supplied. Sherry is also a pastor at For His Glory Worship Center in Mechanicsville. She is a strong believer in knowing that the needs of all people are both spiritual and practical.

Sherry has a deep connection in wanting to spread the great work of FREE with Breath Matters due to recently losing her own father to the battle of COPD this past January. She clearly understands the struggle of people with lung disease and their need to remain as independent as possible in their mobility. You can often here Sherry professing “I don’t just give equipment, I supply independence”. Once you hear the reports of those FREE has been able to touch, you will have a new and informed understanding of people who live everyday with the fear of falling and how the community can be the supplier of everything they need.

The FREE Foundation is the supplier of such great equipment as walkers, wheelchairs, rollators, shower chairs and so much more. Sherry has first-hand knowledge of how the fear of falling can bring more stress on those with breathing issues. She is grateful for the mission of FREE Foundation and always excited to reveal this resource to all who can benefit. She is actively pursuing health fairs, hospitals, medical professionals and the like to shine light on this gem that’s is hidden within our city. You can learn more about this wonderful organization at www.FREE-Foundation.org


PAST MEETING: APRIL 13, 2015

Adrian Aron

Professor Adrian Aron

Department of Physical Therapy, Radford University

"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

Memory loss

Left untreated, sleep apnea can result in a myriad of health issues, such as:

Cardiac Dysrhythmias

Vascular Disease

Cardiac Hypertrophy

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.

View video recording of the meeting online:

Adrian Aron

Adrian Aron

Adrian Aron


PAST MEETING: FEB 9, 2015

Lung Cancer: Where do We go From Here?

Dr. Voelzke gave an extensive review of lung cancer at the February 2015 meeting. He discussed recent advances in treatment and possible future breakthroughs.

VIDEO PART 1 - PART 2 - PART 3 - PART 4 - PART 5

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.

Voelzke

Voelzke

Breathmatters Feb 2015 Meeting


PAST MEETING: JAN 12, 2015

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.

+Annette Bennett Richmond Virginia Talk Jan 2015 Breath Matters - Clinical Trials 2

Annette Bennett Richmond Virginia Talk Jan 2015 Breath Matters - Clinical Trials 1

Annette Bennett Richmond Virginia Talk Jan 2015 Breath Matters - Clinical Trials 3

Annette Bennett Richmond Virginia Talk Jan 2015 Breath Matters - Clinical Trials 4

Annette Bennett Richmond Virginia Talk Jan 2015 Breath Matters - Clinical Trials 6

View the first part of the meeting online via youtube.

VIDEO PART 1 - PART 2 - PART 3 - PART 4

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.


Follow-Up Video - Feb 2015

Annette Bennett follow-up video from the Feb 2015 Breath Matters Meeting.


FOCUS GROUP - HELP BREATH MATTERS

PAST MEETING: NOV 14, 2014

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.

VIDEO PART 1 - PART 2 - PART 3 - PART 4 - PART 5 - PART 6

November 2014

November meeting

 


FDA approves Boehringer's Ofev (nintedanib) for the treatment of IPF and Intermune’s Esbiret (pirfenidone)

The U.S. Food and Drug Administration today approved Ofev (nintedanib) for the treatment of idiopathic pulmonary fibrosis (IPF). Idiopathic pulmonary fibrosis is a condition in which the lungs become progressively scarred over time. As a result, patients with IPF experience shortness of breath, cough, and have difficulty participating in everyday physical activities. Current treatments for IPF include oxygen therapy, pulmonary rehabilitation, and lung transplant.

“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 October 15, 2014 Press release from the FDA


PAST MEETING: OCT 13, 2014

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.

VIDEO PART 1 - PART 2 - PART 3 - PART 4

Lori Sweeney - Breathmatters Meeting - 2

Lori Sweeney - Breathmatters Meeting - 3

Lori Sweeney - Breathmatters Meeting - 4

Lori Sweeney - Breathmatters Meeting - 5

Lori Sweeney - Breathmatters Meeting - 6

 


Researchers hope to create artificial lung to buy time for implant patients

"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


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Help Breathmatters with Amazon


PAST MEETING: SEO 8, 2014

(Nurse Pract.) & Attendee, Pulmonology Department, MCV Hospital, Richmond, VA

TOPIC: "THE NEW COPD MEDS"

Janet Pinson NP - Meeting Breathmatters Sept 2014 1

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.

Discussed were the new inhalers, such as:
  1. Combinent Respimat
  2. Tudorza Pressair
  3. Breo Ellipta
  4. Anora Ellipta
  5. Arcapta Neohaler
  6. Striverdi Respimat
  7. Spiriva Respimat

Janet Pinson NP - Meeting Breathmatters Sept 2014 2

Janet Pinson NP - Meeting Breathmatters Sept 2014 3

Janet Pinson NP - Meeting Breathmatters Sept 2014 4

Janet Pinson NP - Meeting Breathmatters Sept 2014 5


Debbie LeidheiserJuly 2014 Meeting

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.

Read more about the July 2014 Meeting

SEE THE ONLINE VIDEO RECORDING OF THE JULY 2014 MEETING


Important news on Idiopathic Pulmonary Fibrosis

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


Action Changes ThingsPulmonary Fibrosis Study

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 swigrisj@njc.org.

P P P P F Study


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.

DONATE NOW

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.

www.Everybreathcountsfilm.com

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.

THANK YOU TO FASTCAP

Pocket Mask

MXV Pocket Dust Mask

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

Finding Hope in Hospice

IPF WORLD WEEK

LEARN MORE AT
THE IPF WEBSITE

ipfworld.org

SUBSCRIBE TO OUR FREE NEWSLETTER! EMAIL SIGNUP

Amazing Raise

You Tube Videos Breathmatters Meetings

Using an Inhaler Online Video

WHY WE NEED YOU TO CONTACT YOUR CONGRESSPERSON

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.

THE GOAL

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.

WRITE CONGRESS

Virginia Easy Access

For seniors and adults with disabilities and the providers that support them

TRANSPORTATION FINANCIAL
HOUSING

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

Questions?

Call the Facilitator!

Russell Glover
(804) 378.0628
russellglover@
verizon.net

Stop Smoking Today Online!

Contact Susan J. Keen,
RN, OCN at
CJW Med Center

email: Susan.Keen [at] hcahealthcare.com


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Breath Matters - C/o Russell Glover, President - 11520 Edenberry Drive - Richmond, VA 23236-4030
804.378.0628

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