Caring Voice Community - Fall 2012

COMMUNITY Volume 1 • Issue 3 • Fall 2012 The Quarterly Publication of Caring Voice Coalition, Inc.

Breathing New Life How one young woman’s double lung transplant helped put life into perspective

PAGE 18

Your Guide to Pulmonary Hypertension The Faces of PH Patient Stories e-Learning Tutorials Physician Q&A

Also in this issue Writing as Therapy Balancing Your Budget The Importance of Embracing Technology

The Diseases We Support

who is Caring Voice Coalition?

Caring Voice Coalition, Inc. (CVC) is a national 501(c)(3) non-profit, charitable organization established in 2003 to provide financial, insurance education and patient support to individuals diagnosed with specific chronic or life-threatening diseases. CVC seeks to empower these patients by providing comprehensive programs delivered through a holistic approach by a staff of knowledgeable, dedicated and caring individuals.

How We Help Financial Assistance Financial Assistance in the form of monetary grants, is provided to eligible patients to help remove the barriers to starting or remaining on therapy.

Insurance Education & Counseling Insurance Education & Counseling offers both Alternate Coverage and Social Security Disability & Appeals Assistance to help you gain a better understanding of insurance and help appeal any denials of coverage you may be faced with.

Patient Support Patient Support helps patients identify public and private programs and services that may be of benefit to them.

Call Toll Free 1-800-267-1440 CaringVoice.org

ONTENTS

Page 4. Letter from CVC Vice President Samantha Harris

Page 12. Highlighting the many faces of Pulmonary Arterial Hypertension

Page 22. Explaining the TOPP Registry

Page 32. A patient’s journey: being diagnosed with a chronic illness

Page 5. Message from CVC President Pam Harris

Page 14. In Their Words: PH patient Yunena Morales

Page 24. Catching Up with the R.E.M.

Page 34. Alpha-1 Association’s new genetic counselor

Page 6. The struggles of living with a chronic illness during winter months

Page 16. Newsmaker Q&A with

Page 26. The appeals process of

Page 35. Patient Association Profile: The Alpha-1 Association

Page 8. The importance of embracing technology as a means of remembering and finding support

Page 17. The dilemma of a delayed PH diagnosis

Page 28. Balancing your budget, all the struggle it presents

Page 36. The next issue: In Their Words

Page 10. A guide to Pulmonary

Page 31. Community Marketplace:

Hypertension (PH)

Page 18. Cover Story: Getting Back What’s Missing - A story of a double lung transplant at age 13

Advertising Disclaimer Any references to products, services or health care providers in this magazine are not a recommendation or endorsement of products, services or providers.

Medical Disclaimer The information provided in Caring Voice Community is not a substitute for professional medical advice or care.

Copyright Caring Voice Community is produced by Caring Voice Coalition, Inc. – Copyright ©2012

pediatric cardiologist Dr. Usama Kanaan

Runner: How writing can relieve Social Security Disability

Lauren’s Hope Medical IDs

1

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Volume 1 • Issue 3 • Fall 2012 The Quarterly Publication of Caring Voice Coalition, Inc.

Photo by Lee Grant

COMMUNITY

Letter from the Breathing New Life How one young woman’s double lung transplant helped put life into perspective

PAGE 18

Your Guide to Pulmonary Hypertension The Faces of PH Patient Stories e-Learning Tutorials Physician Q&A

Also in this issue Writing as Therapy Balancing Your Budget The Importance of Embracing Technology

We would like to get your feedback on this issue.

What did you like or dislike?

Submit your comments to magazine@caringvoice.org

Staff Publishers Pamela Harris

pharris@caringvoice.org

Samantha Harris

sharris@caringvoice.org

Editor in Chief Alex Withrow

888.267.1440 x 144 awithrow@caringvoice.org

Artistic Director Taylor Scott

888.267.1440 x 117 tscott@caringvoice.org

Graphic Design & Illustration Anthony Nesossis

888.267.1440 x 174 anesossis@caringvoice.org

Advertising Representative Josh Smithmier

888.267.1440 x 146 jsmithmier@caringvoice.org

Contributors Julie Flygare

Writing Therapy

Amanda Nguyen PHA Classroom

Nicole Zatkoff

Breaking Down Social Security Disability

Rebecca App

Balancing Your Budget

Tim Robertson

Embracing Technology

Editor

W

hen I was 17 years old, my best friend was in a car accident on Christmas evening, and he died as a result of his injuries a few hours into the New Year. His name was Corrin Travis. He was 16 years old.

News of Corrin’s death was devastating. Most every major event I had pictured for myself included him in some way, so when news of his passing broke, the majority of my plans were irreversibly altered.

Jump ahead seven years after Corrin’s death, and I was working as a newspaper reporter in northern Virginia. Christmas was approaching and I had the idea of interviewing Corrin’s mother, Lynne, with the hope of telling a story. I wanted to tell a story from the basis of hope.

I wanted to tell a story about how, if you are struck with something so devastating and life altering, that if you fight through it, maybe you’ll find that your new normal is worth living in.

Lynne agreed to the story, but only if we did it honestly. We had to tell the truth, no matter how painful. I agreed, and a few days later I interviewed her for nearly three hours in which she told me in very vivid, graphic detail what it means for a mother to lose her son.

Lynne told me many profound things during that interview, but the thing that has stuck with me most is that, everyday when she wakes up, she has to consciously remind herself to get out of bed. Okay, Lynne, now you have to get up, now you have to go be among people, and work and talk and live. Now you have to keep going.

I had never heard anyone describe their life in such a way, and it was in that moment that I realized Lynne is the strongest person I know. She’s equipped with a fight and a drive that is unparalleled to anything I’ve ever seen.

That is, until I started working at Caring Voice Coalition, and I met a few people with a similar fight.

It’s the fight of a 9/11-rescue worker who, despite his Pulmonary Hypertension, braves the streets of New York City everyday to protect its citizens.

It’s the fight of a dancer who has achieved her dreams by owning her Narcolepsy, and not the other way around.

It’s the fight of a woman who travels the country advocating awareness about the Huntington’s Disease that took the life of her husband, and is slowly claiming the life of her youngest daughter.

It’s the fight of a runner who doesn’t let her Narcolepsy stop her from climbing literal peaks in honor of the father she’s recently lost.

And it’s the fight of a young girl who, after receiving a double lung transplant as a cure for her Pulmonary Hypertension, proposes new legislation to increase awareness about organ donation.

These are the people who inspire me. These are the people who have been generous enough to share their stories with me, and trust that I will do them justice by telling their stories in this magazine. It’s the people who brave the pages of this magazine, and the patients who read these pages, who inspire me to do what I do, and to keep fighting.

As a writer, it’s my job to be able to articulate how much these people mean to me. But words are such a futile means to the compassion I feel. I can only offer you my most humble, sincere thank you.

From the bottom of my heart, thank you.

Alex Withrow Editor in Chief

3

Letter from the

Vice President

R

ecently, I attended the 10th Strategic Medicare Summit in Arlington, Virginia, where the nation’s leading Medicare policy authorities addressed the implementation and implications of monumental health care reform. This Summit had a focus on Medicare expansion, insurance reform, changing payment models and national health coverage. At CVC, we believe it is critical to keep abreast of how the changing health care and insurance landscape will impact patients within our community.

As we all know, health care has become a very important issue this election year.

With chronically ill patients being so severely impacted by the uncertainty of the health care system in the United States, casting your vote is more important than ever on the future of health care this election year.

Over the last year, a primary need that we have identified within the orphan disease community is the lack of education regarding the Affordable Care Act. Our patients want to know how it will directly impact Americans with chronic illnesses and their ability to access health care. We feel it is imperative to educate our patients on their insurance benefits and inform them about new changes regarding the Affordable Care Act. Our staff is trained to answer such questions regarding insurance benefits and we are continually learning about the specifics on how the new health care reform will impact patients within the orphan disease community.

We realize that patients with a chronic illness have the heavy burden of expensive medical costs. Out-of-pocket health care costs continue to rise each year and place increased stress on family budgets. There is great fear when a patient is diagnosed with a chronic illness and they find out the high costs associated with their life-sustaining therapies. At CVC, we hope to take some of the financial and emotional burden from our patients who may struggle with the out-of-pocket costs in order to remain on their medications, regardless of the outcome of the 2012 presidential election.

Your vote is your voice as an American citizen. It’s your opportunity to be heard, to hold elected officials accountable for their decisions and to have a say in important issues that affect your community. Remember, on Election Day, every vote matters.

Samantha Harris Vice President

www.oxycouture.org 4

caringvoice.org • Fall 2012

Oxy Couture is proud to have developed a nasal cannula cover that is washable and interchangeable.

We have designed these covers to aid in the prevention of break down of the skin from the tubing due to prolonged oxygen wear. At Oxy Couture we address not only your comfort but your need for individuality.

Our covers come in many styles, and can even be customized to your personal needs. At Oxy Couture we want people to see the person, not the patient.

We Welcome Your Feedback and Questions.

Comments from our Readers Dear Caring Voice Community, it is Sunday morning and here in Marietta, Georgia, it is raining and I’m sitting enjoying my morning coffee looking for something easy to do. I see my stack of magazines next to my table and in that stack is the Community magazine, which I have just finished reading cover to cover.

In 1973, when I was 29 years old, I was diagnosed with sarcoidosis. Doctors told me it may show up again somewhere else in my body and it has, now in my lungs. But because of your magazine, I have been informed of many different web sites that will help me understand PAH and what I can do to help myself.

Thank you so much for sending me your magazine.

Bless everyone at Caring Voice Coalition.

Cheryl A. Marietta, Georgia

I want to let you know what a wonderful magazine Community is, as well as very informative.

Please continue to put out such a wonderful magazine; it touches more lives than you think.

Thank you again, Carrie S. Eleela, Hawaii

magazine@caringvoice.org Published comments may be edited for clarity and length.

@CVCinc

www.facebook.com/CaringVoiceCoalition

Message from the

President

Dear Friends:

We have much to be proud of. The number of Caring Voice Community subscriptions has substantially grown since our inaugural edition was released in March 2012. We can only thank you, our dedicated readers, for that.

We know that without your support, our success would not have been achieved as quickly as it has over the past several months. With every new issue, many more people call and e-mail in their subscriptions. Through Caring Voice Community, we are providing disease awareness, education and encouragement to more than 40,000 people who are already receiving the magazine. Our goal is to reach more than 100,000 readers by the end of 2012. This is a very ambitious target, but I know with your help, we can meet or possibly even exceed that goal.

By subscribing to Caring Voice Community, you ensure that we continue to support and educate patients with orphan conditions throughout our nation. You can sign up for subscriptions online at www.caringvoice.org/media-center/ subscriptions. It’s easy to do, and it will make a big difference in the lives of many, many patients.

Thank you again for partnering with us on behalf of all the patients we serve and support here at CVC. Appreciatively,

Subscribe to Pam Harris Cofounder & President

CARING VOICE COMMUNITY Visit www.caringvoice.org or email magazine@caringvoice.org 4 Issues for only $10.00

5

by Alex Withrow

Living with chronic illnesses during winter months

The cold weather season brings with it a few certainties: heavy clothes, cold symptoms, trips to the pharmacy, and so on. And while most people take proactive measures to avoid catching a cold – by getting the flu shot, stocking up on various medications, etc. – sometimes a cold is simply unavoidable.

W

hen most people get sick, they go through the motions. Laze about, sweat it out, eat simple foods, take DayQuil, call out sick, and so on. Once they feel better, they go back to work and hope they don’t have to bother with cold symptoms for the rest of the season. But for people with chronic, life-threatening diseases, going through the motions takes on a whole new meaning. Getting sick for these people is more than just a nuisance, it’s something that can be fatal.

“I’m very proactive with my health in general, but I am far more proactive with my health during the winter,” said Jen Jopp, a patient with Alpha-1 Antitrypsin Deficiency, a disease that makes it nearly impossible to acquire the protein that protects the lungs. Without this protein,

6

caringvoice.org • Fall 2012

patients are susceptible to emphysema and chronic bronchitis on a normal basis. Cold weather only increases their symptoms.

Jopp lives in East Bethel, Minnesota, about 30 miles north of Minneapolis, where the winters are long and brutal.

When winds are strong, the temperature can dip to negative 20 degrees, a massive red flag for Jopp’s affliction.

“Everyone gets sick. But when you have a disease like Alpha-1, you have to be stronger with your methods of prevention,” Jopp said. “When I have to go outside, I always have a scarf or a mask to help prevent the cool air from getting into my lungs. If I can help it, I try not to go out.

When I do, it’s short distances.”

On a good day, Jopp said, it takes her nearly an hour and a half each way to get to work, a laborious task only made worse during the winter.

“In the mornings, my husband will go out and start my car for me,” Jopp said.

“It can be very difficult to get into a cold vehicle. I just have to make sure I’m wearing the proper amount of clothing, and always with a mask on. It’s all about reactiveness.”

One of the main questions for someone in Jopp’s situation – someone with a chronic disease who opts to live in an extremely cold environment – may be why she chooses to live where she does. Why not move to a warmer area?

“We have thought about moving before,” Jopp said. “But what I will say about Minnesota is that, when it’s cold, it’s cold.

I can get acclimated quicker to steadier weather patterns. That steadiness is easier for me than drastic weather changes. My life is here; my home, my family, my job.”

Whether a move is feasible or not, experts say that patients with chronic

“

...when you have a disease like Alpha-1, you have to be stronger with your methods of prevention.”

diseases should consider the option when the time is right.

“People who can afford to be snow birds and live in cold areas often travel to warm places when it’s convenient for them,” said Debbie Castro, Volunteer Service Director for the Pulmonary Hypertension Association.

“We have support groups in Florida that increase in attendance during cold months, because people are traveling from the Midwest, Minneapolis, Ohio, Illinois; anywhere it’s cold.

“In the eight years I’ve worked for the PHA, I’ve heard a lot of patients say that, ‘In the time I have left, the quality of life is important to me.’ Knowing that they have less time than others, many people feel it is necessary to move down south.”

Pulmonary Hypertension, Castro said, often comes secondary to scleroderma or other autoimmune conditions, like Raynaud’s, and because of that, patients are more sensitive to the cold.

“Places like your fingertips and feet are more frostbite prone,” Castro said. “If you can afford to move, and if your quality of life will improve, then you may want to consider moving as an option.”

Choosing that option is never easy. But for Alpha-1 patient Ed Kriesel, the health benefits of a move to warmer climates was a change he found necessary.

Kriesel was born and raised outside of Minneapolis, and after being diagnosed with Alpha-1 three years ago, he found the harsh winters unbearable to live through.

“When you’re around winds that are 20 below zero, it actually hurts to breathe in,” Kriesel said. “The cold air compresses my lungs more, so it’s harder for me to take in air and harder for me to push it out because the capacity of my lungs is less than what it normally is.”

A few years ago, Kriesel spent January and February at his friend’s condo in Scottsdale, Arizona. The change in his health was welcoming and palpable. He spent much of the next winter in Arizona before consulting his doctors about moving.

“They told me that if the warmer climate worked better for me, which it did greatly, then I should consider moving,” Kriesel said. While moving away from his children wasn’t easy, his job let him switch locations and work out of their office in Phoenix, where Kriesel has lived since 2011.

“I talked with both of my kids a lot about my moving,” Kriesel said. “They’re a little bit older, and they understand why I did it. It wasn’t that I didn’t like where I was and I wanted to get out, it’s simply because it is better for my health.”

Alpha-1 patients Jen Jopp (far left) and Ed Kriesel (third from left) stand with CVC’s Jennifer Young (second from left) and Pam Harris (fourth from left)

T

ips for staying healthy during flu season are plentiful, but no less important. Here are a host of helpful guidelines from the Pulmonary Hypertension Association on how people with chronic diseases can stay warm and healthy during cold winter months.

Outside

■ C old air can take your breath away;

always wear a mask or a long, warm scarf to protect your face and warm the air around your mouth

■ U se heat packs inside of mittens to keep your hands warm

■ U se a cane to keep steady, especially in slick conditions

■ A void

strenuous activity such as shoveling snow

■ I f driving in cold weather, store extra

blankets, warm clothing, food and water in your car

Inside

■W hen returning indoors, have your home ready for comfort

■ H ave slippers, throw blanket, warm

robe, and everything ready by your front door so that when you arrive, you can switch out from wet, cold winter clothes to warm clothes quickly

■ L eave a drink in a handy thermos ■ E xercise indoors: whether on

a machine in your home, or by walking in a large indoor shopping mall

■ A void long, hot baths – hot baths and showers remove your skin’s natural moisturizing oils, leaving it dry and itchy. Instead, try shorter, warm soaks or showers

7

Why

Embracing

Technology

Might be the

Answer for

You

bTy im

on s t r Robe

f you have been following the plethora of articles about medication adherence (compliance), both in our magazine and in the lay press, you might be wondering what you can do to improve your adherence.

And it truly does come down to the patient and their willingness to commit to taking their medications as prescribed. Every patient has their own method of working this task into their daily routine. Maybe your struggle is overcoming scheduling issues and time commitments. Maybe it is overcoming absent-mindedness or even resentment of the necessity of it all. The bottom line is, you are the key to achieving the most benefit out of the life-saving therapy that you have been prescribed, and the first and most important step is to take the medication at the appropriate time each and every day.

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caringvoice.org • Fall 2012

The gold-standard pillbox When I worked in retail pharmacy, we used to give away the classic seven-day pillbox with our company logo on it. The goal was to emphasize the importance of remembering to take your medication.

Based on my own experience, you might be surprised at how many people actually do get a lot out of using this simple adherence device. Simply sitting down once a week to fill the box is a subtle reminder that these medications were important. These devices are cheap and, for many, very effective.

But it certainly does have limitations, ranging from compartment size to being a purely passive device. After all, you have to actually remember to open the pillbox.

Put technology to work for you One visit to epill.com, medminder.com or even amazon.com and you will be amazed at the sheer quantity of devices

and services that are available to help you remember to take your medication.

These devices can alarm you, talk to you, and even text you when it’s time to take your medication. They are very flexible, enabling you to enter multiple medications with complex medication timings. The price range varies from very affordable to very expensive. I can almost guarantee that, given some time to research, you will be able to find a device or service that fits your needs and your price range. There are also many “apps” for your mobile phone if you are so inclined.

I would like to highlight a few devices or services that you may want to look at first. This is certainly not an exhaustive list and is only intended to give you an idea of the range of products out there. And, as always, please let your health care provider know about any device or service that you may be purchasing. They may want to help you make your decision!

MyMedSchedule Mobile App, RememberItNow Mobile App, and MediMemory Mobile App are applications available for iPhone and/or Android phones that allow you to keep a complete profile of your medical information, a detailed list of your medications and set reminders.

Multi-Alarm TimeCap $29.95 via epill.com How many times have you asked yourself, “Did I take my medication today?” This device actually takes the place of your medication bottle top and reminds you when to take your dose of medication.

MeDose Six-Alarm Medication Reminder Watch $99.95 via epill.com

A convenient watch that also acts as a medication reminder. It offers vibration or sound alarms and can operate six alarms per day.

The MedCenter System $69.95 via medcentersystems.com

This device gives you a pillbox for each day of the month and reminds you to take each dose, whether it is once a day or even four times a day.

NexDose online medication management system $8.99/month via nexdosemtm.com

This is an online subscription to help you manage your medications. There are many different plans to help you with your specific needs. This service provides medication schedule planning as well as indepth services such as drug-interaction analysis and access to medical professionals.

Cloud 9 o t e m o lc e W

What is Cloud 9?

Welcome to Caring Voice Coalition’s new secure portal, Cloud 9.

Here you, the patient, will find all of your CVC-related information available at the click of a button.

Equate this page to online banking. If you want to know how much money is in your checking account, you could call a bank, or you could simply log in online, and check within seconds. That’s Cloud 9.

Instead of having to get in touch with your case manager, you can view the information that you provide to CVC right here.

On the portal, you can: • Apply for or renew financial assistance • Update personal information, (ex. address, insurance, email address, etc.)

• Communicate with your CVC care team securely via Cloud 9’s secure messaging center.

“More and more people are in the electronic world, so we want to make it easier for them to communicate with us.”

Michael Dermer, CVC’s Systems Architect

CVC has and will always put our patients first. And we feel that Cloud 9 is a large step to making the quality of the care you receive even simpler. Visit us at www.caringvoice.org/2011/09/apply-for-help.

9

A Guide to

Photo by Alex Withrow

10

caringvoice.org • Fall 2012

WHAT IS

Pulmonary Hypertension GENERAL

Pulmonary

Hypertension PAGE 12

The Many Faces of Pulmonary Arterial Hypertension PAGE 13

PHA Classroom: e-Learning. Anytime. Anyplace.

PAGE 14

In Their Words PAGE 16

Q&A with Dr. Usama B. Kanaan, M.D.

Pulmonary Hypertension (PH) is a simplified name for a complex health problem– continuous high blood pressure in the pulmonary artery in the lungs, resulting in an enlarged heart which can also lose its ability to pump.

It is a disease that affects people of all ages and ethnic backgrounds although some people are more prone to developing PH. PH is broken down into two main categories: PH which occurs as a separate entity, either sporadically or due to genetic inheritance, is called idiopathic PH PH is also associated with other diseases including scleroderma, sickle cell anemia, lupus, chronic liver disease, and HIV. PH may also be associated with use of diet drugs and illicit drugs such as methamphetamines

DIAGNOSIS & SYMPTOMS PH is often not diagnosed in a timely manner because its early symptoms can often be attributed to those of many other conditions. Some of the symptoms of PH include: Chest pain, Shortness of breath or fatigue Until 1990, there were no accepted treatments for PH, but today patients have several options to discuss with their doctors, although there is still no known cure.

The treatment that has been in use the longest is not only very expensive, but it is also highly invasive, requiring the use of a pump that continuously administers medicine directly into a vein in the chest by means of an indwelling catheter.

PAGE 18

Cover Story: Getting Back What’s Missing Left page: Double lung transplant recipient, Maddie Shinaberry in her hometown of Harrisonburg, Virginia

For more information, visit the Pulmonary Hypertension Association at www.PHAssociation.org.

11

The Many faces of

Pulmonary Arterial

T

ake a look at the world around you, the elderly woman crossing the street on her way to the market, the thirtysomething choreographing a dance number for his students, the business executive preparing documents for the big meeting, or the mother getting her children ready for school. These individuals might seem to be leading completely different lives with very little in common.

However, each of these individuals could easily be exhibiting similar symptoms that are interfering with their day-to-day activities. These symptoms could include difficulty breathing, dizziness, feeling tired and worn-out, and fast and irregular heartbeats. No matter how mild or severe the symptoms, they are most likely making even the simplest of daily tasks difficult to manage. The cause of these symptoms could be a condition called Pulmonary Arterial Hypertension, also known as PAH. PAH refers to high blood pressure in the arteries connecting the heart to the lungs, or the pulmonary arteries. The cells that line these arteries undergo multiple changes that lead to narrowing or blockage of the arteries. This results in high pressure and decreased blood flow from the heart into the lungs. This means the heart then has to work much harder to pump blood into the lungs with less blood flowing through the lungs to pick up oxygen. Over time, the abnormally high pressure in the pulmonary arteries puts a strain on the right side of the heart causing it to become enlarged. Eventually the heart will become overworked, weakened and unable to function

12

caringvoice.org • Fall 2012

Hypertension normally ultimately leading to heart failure. All of these changes can lead to the symptoms previously mentioned and additional symptoms such as dry cough, fainting, chest pain and swelling of the ankles. Because one of the first signs of PAH is difficulty breathing, it can easily be misdiagnosed as asthma, bronchitis or heart disease. If you suffer from PAH, your symptoms will worsen as the disease progresses, which in turn will cause your activity level to decline. Once the disease becomes severe, these symptoms can occur while at rest.

PAH is known as an orphan disease, which means it affects only a small number of individuals. Although rare, it can affect many walks of life, age groups, races, both men and women, as well as the young and elderly. However, women between the ages of 20 and 50 are more likely to develop PAH. No one really knows what causes some people to develop PAH, but there are some known conditions that can lead to the disease.

Among these are heart disease, liver disease, HIV infection, chronic lung disease, connective tissue diseases (lupus and scleroderma), use of illegal drugs and certain prescription diet medications which are no longer prescribed in the United States. Additionally, the disease can be inherited, but in some cases, the cause is completely unknown.

Because symptoms develop gradually and can be mistaken for other illnesses, the diagnosis of PAH is often delayed.

A physician experienced in the diseases of the heart and lungs will be able to make the diagnosis. A detailed family and medical history, complete physical examination, blood tests, chest X-ray, an echocardiogram and other tests and procedures will help rule out other

By Dr. Brian Hartline diseases and help make the correct diagnosis of PAH. If PAH is suspected, the diagnosis will be confirmed by directly measuring the blood pressure in the pulmonary arteries. This is done by inserting a long thin tube into the neck or leg vein and then into the right side of the heart. This test is known as a right heart catheterization.

Currently there is no cure for PAH and it is an extremely progressive disease. The doctor will decide what will be the best path of treatment based on the severity of the symptoms and the underlying cause of PAH. There are a number of treatment options currently available and many new treatments being tested in clinical trials.

Early diagnosis and proper treatment are essential and can help an individual suffering from PAH increase their activity level and hopefully resume a productive life at work and home.

Dr. Brian Hartline received his B.A. in microbiology from the University of Arkansas Fayetteville. After graduation, he spent a year at Southwestern Medical Center in Dallas working on numerous research projects with a focus on burn wound healing.

He then attended the University of Arkansas for Medical Sciences where he received his M.D. degree.

After completion of residency in pediatrics through the University of Tennessee and LeBonheur Children’s Hospital, Dr. Hartline practiced as a general pediatrician in Memphis before making a career change to the work within the pharmaceutical industry.

He has over 12 years of pharmaceutical industry experience and is currently an Associate Medical Director for Actelion Pharmaceuticals.

Being informed is the key to managing any illness. The Pulmonary Hypertension Association (PHA) helps the PH community do just that by offering patients and caregivers the opportunity to attend live online e-learning events or watch recordings at their leisure through its innovative program, PHA Classroom.

Whether from your desk, your sofa or the local coffee shop, the live e-learning events in PHA Classroom are free and accessible to anyone with an internet connection and a phone line. These live events are conducted as webinars – with audio and slides – to guarantee both a visual and interactive experience. With new webinars each month presented by PH patients and leading PH experts, you can count on having plenty of opportunities to learn and stay informed.

Can’t make it to a webinar? No worries! PHA Classroom also hosts an extensive archive of recordings from previous live e-learning events and conferences. You can browse through the classes by topic area and watch the ones you are interested in whenever you please. Topic areas include: • About Pulmonary Hypertension • Living with PH • Caregivers and Parents • Newly Diagnosed Patients • Associated Diseases • Insurance

• Get Involved: Fighting for the Cause • PHA Updates and Events • 2010 International PH Conference • En Español • PH Association Leader Lessons

With information about living with PH, treatment information and ways to fight back, PHA Classroom has something for everyone. So stay informed and stay empowered by visiting PHA Classroom today!

Anyone wishing to attend a webinar is encouraged to register online beforehand.

To view a schedule of upcoming events or watch previous recordings, you can visit www.PHAssociation.org/Classroom. We also encourage you to sign up to receive PHA’s biweekly e-newsletter, PHANews, to stay updated on upcoming events, recent recordings and more. To sign up, visit www.PHAssociation.org/PHANews.

In Their Words

Yunena Morales, Pulmonary Hypertension patient As told to Alex Withrow > My name is pronounced You-Knee-Na. I like saying it in three phrases like that. > My path to diagnosis isn’t a pleasant one. I was misdiagnosed with many different diseases for more than 12 years. > Stress was usually what doctors said was the cause of my breathlessness and constant chest pain. And that, in part, is right. I was stressed because I was constantly being misdiagnosed.

It was a never-ending cycle. > Atrial septal defect, idiopathic edema, Pulmonary Hypertension, stress, no Pulmonary Hypertension – the list was endless. > After years of tests and medications, I was definitively diagnosed with PH, which was a relief. It was scary, of course, but I was relieved to finally know what this thing was. > I was diagnosed in 2003 in Jamaica. I was sent to John Hopkins, and the doctor there told me I needed to exercise. Exercise was the best way to get on with my life, I thought. But after a few weeks of walking every night, my chest felt like it was on fire. So that was the end of heavy exercise for me. > I’m a very tenacious person. I had to fight for years just to get diagnosed. And now that I know I have PH, I have to survive as best I know how. So I’ve learned to cope.

I’ve learned to cope with having a disease that is invisible. Friends, family members, strangers, airport workers – many people don’t understand the complexity of PH, because they cannot see it. So you have to stick up for yourself and explain it to people. > Joy is something I think about a lot. I think it is important to remember your past joy, and anticipate new joys. > My biggest advice for people like me: Learn to laugh more. It does wonders.

Photo by Anthony Nesossis

14

Want to hear more patient stories? Visit CVC’s Vimeo page.

caringvoice.org • Fall 2012

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CAREGIVING CORNER

Department Spotlight: IT

By Rachel Kelly

CVC’s Information Systems team

T

he Information Systems department at CVC includes two teams, Operations and Applications, both of which

fall under the direction of Mike Dermer.

This department is committed to providing technical support for the entire organization.

The Applications team ensures processes are enhanced and unhindered by technology.

The Operations team meets needs before they arise by anticipating upcoming changes and proactively taking action to guarantee smooth progress. The members of these teams allow the staff to spend less

To have good friends, you need to be a good friend. But when you find yourself balancing work, caregiving and life in general, it can be difficult to stay in touch.

Here are some helpful tips that can help you find balance in your roles as both caregiver and friend:

Make the Effort: While you may not be as available as you once were, make the effort to try to keep in touch with your friends; and remember-friendships are built on give and take.

An occasional email or text can show your friends that they are on your mind and in your heart.

Rely on Routine Plans: Spur of the moment get-togethers can be difficult when caregiving responsibilities are at play. Weekly or monthly meetings with friends that are planned in advance can help you keep in touch with friends while not abandoning your loved one. You could also invite friends over or, if possible, bring your loved one along.

L imit Your Venting: It can be extremely therapeutic to vent to a friend, but remember that moderation is key. Limit the amount of time you vent to 15 minutes, and hold yourself accountable by telling your friend ahead of time or by setting a timer. This will allow for your friendship to continue to grow and not be rooted solely in your role as a caregiver. It’s also good for you to talk about other things for a while!

E bb and Flow: It may be hard to be a good friend right now, but like other taxing times (starting a new job, starting a family etc.), your friends will understand that this is just another stage of life.

Just remember that your friends will go through times like this too, and you will be there for them as well!

Not All Friendships Will Last: This is a time when true friends will stand out. You may find that you have some fairweather friends who can be great friends when everything is going great as well but who fade away when times are tougher.

Acknowledging this and preparing yourself for different reactions from different people can make your life a little easier.

Just remember that some people are scared or intimidated by the demands of caregiving – it’s not you.

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thinking about operational and system <div> <formtime action=”/Account/LogOn” method=”post”> <fieldset> issues and more time focusing on meeting <legend>Account Information</legend> the needs of our patients.

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NEWSMAKER

Dr. Usama B. Kanaan, M.D. Pediatric Cardiologist, Children’s Healthcare of Atlanta Interview by Alex Withrow

DR. USAMA B. KANAAN has been a Pediatric Cardiologist at Children’s Healthcare of Atlanta since 2008, where he currently acts as the director of their Pulmonary Hypertension Program. Caring Voice Community spoke with Dr. Kanaan about the frequency of PH in children, the benefits of the child/parent dynamic, and the importance of distinguishing the zebras from the horses.

What drew you toward pediatric medicine?

It can be hard to pin it on one thing. I really like the team aspect of pediatric medicine. One of the strongest draws, for me, is getting to work with parents.

When you’re taking care of a child, most of your communication is with a parent.

In pediatric medicine, there tends to be a close alliance between the goals of the care team and the goals of the family. From a personal standpoint, having a sick child in front of you is about as strong a motivator as you can have to push yourself to do the best possible job you can for the patient From your perspective does dealing with the child/parent dynamic often produce good results?

Yes, overwhelmingly so. Now, I don’t have any evidence for this other than what I’ve observed, but for the vast majority of cases, the relationship between the child (who is a patient) and their parent is really strengthened through the process. There’s a lot of stress on the family due to the child’s chronic illness, but child patients often become very close to their parents during an illness. It’s an incredibly positive force to witness.

How common is Pulmonary Hypertension among children?

The answer to that depends on how you define PH. The most rare form is idiopathic pulmonary artery hypertension or heritable pulmonary artery hypertension and that occurs in about two or three per million children. We more commonly see associated pulmonary artery hypertension, which is more like 25 to 50 cases per million.

And that’s according to the best estimates we have. It is still a very rare disease.

Are treatments for PH different for children and adults?

Treatments for both are pretty much identical. We don’t have any FDA approved drugs for children with PH, so all of the medications used for adults are also used for kids.

How is the dynamic different in telling a child they have an incurable disease, than in telling an adult?

Well, that’s the hardest part of my job.

It’s never easy, when I know I have a conversation like that coming up. But to be clear, I haven’t had a lot of those discussions with adults, so I can’t really compare the two.

It really depends on the age of the child. Having that conversation with an 8-year-old versus an 18-year-old is very different. But no matter what, it’s something that we need to partner with the parents on. There’s a large diversity of opinion in terms of how the news should be shared with the child. When it should be shared, and in some cases, even whether it should be shared. Some parents don’t want their child to know that they have a terminal condition, and that can be a real challenge. We want a patient to know why we’re doing all of the things we are doing as physicians. But if a parent strongly disagrees with that, then we have to respect their desires.

But most of the time, we work together with the parents to find a way that is most comfortable for everyone involved. We rely a lot on other experts in our hospital to help us out. If religion is a significant part of a family’s life, then having a chaplain present at that discussion can be helpful. There are child life specialists,

who deal with issues in communicating with children, explaining procedures in an appropriate way, and so on.

There’s really no one conversation where we sit down and tell the child they have this terminal illness. It’s an ongoing process that involves a lot of discussion with everyone involved.

PH is often misdiagnosed. How does the diagnosis timeline for a child compare to an adult’s?

Similar to adults, there is usually a long weed time between initial symptoms and diagnosis. The best data we have comes from the TOPP Registry, which examined the features of children with PH.* That study found that, from the time of the patient’s first symptom to diagnosis was a median of 17 months.

So, this is a rather significant problem.

Most of us feel that earlier diagnosis would lead to earlier treatment, resulting in better outcomes and quality of life.

There are many common, benign things that PAH can mimic, and that is a real challenge for primary care physicians.

The Pulmonary Hypertension Association (PHA) recently announced Sometimes It’s PH, an awareness campaign concerning this very issue. Their campaign is accompanied by an image of a zebra. One of the things medical students have been taught for generations is that if you hear hoof beats, it’s probably horses, not zebras. If someone is presenting you with a common complaint, it’s probably a common disease, not a rare disease. The point is, sometimes shortness of breath isn’t a horse running, it’s a zebra that needs to be examined closer.

Turn to page 22 to read more about how the TOPP Registry is helping patients diagnosed with Pulmonary Hypertension.

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caringvoice.org • Fall 2012

PULMONARY HYPERTENSION: The Dilemma of Delayed Diagnosis High blood pressure in the lungs is called pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH). Once considered rapidly fatal, this rare disease is now serious but treatable. Yet even with nine therapies available, many patients receive proper diagnosis and treatment too late.

pa

pne

CO

a

PD

sity obe

slee

Many patients will see 3 or more different physicians over a 3-year period before they are properly diagnosed with PAH

2.8 years

Symptoms often lead to misdiagnosis of pulmonary hypertension as sleep apnea, COPD, asthma or obesity

asthm

a

jan | feb | mar | apr | may | jun | jul | aug | sept | oct | nov | dec jan | feb | mar | apr | may | jun | jul | aug | sept | oct | nov | dec jan | feb | mar | apr | may | jun | jul | aug | sept | oct

The average time between PH symptom onset and diagnosis

ALMOST ¾ OF PATIENTS HAVE ADVANCED PH (CLASS III OR IV) BY THE TIME THEY ARE DIAGNOSED SOURCES: • PHA International White Paper: Pulmonary Arterial Hypertension: Recommendations for Improving Patient Outcomes (2011) • Delay in Recognition of Pulmonary Arterial Hypertension: Factors Identified From the REVEAL Registry, Lynette M. Brown, MD, PhD, FCCP, et al (CHEST, 2011) • The Early Diagnosis of Pulmonary Arterial Hypertension: Can We Do Better?, Harold I. Palevsky (CHEST, 2011)

Time to diagnosis has not changed in over 20 years

The Pulmonary Hypertension Association’s new early diagnosis campaign, Sometimes it’s PH, targets this injustice.

Learn more at: www.SometimesItsPH.org 301-565-3004

17

How a young woman’s double lung transplant helped put all of life’s challenges into perspective

By Alex Withrow adison Shinaberry has lived a full life.

As a dancer, she’s performed and trained in locales as varied as Pittsburgh, New York City and Bermuda. As a patient with an incurable disease, she’s received a double lung transplant as a means of eliminating her Primary Pulmonary Hypertension. As an advocate, she’s lobbied legislation to make students more aware of organ donation. As a student, she’s gotten into a revered Virginia university on a full academic scholarship.

And she’s done all of this before her 18th birthday.

Madison’s battle with PH dates back to 2006, when, at 11 years old, she was dancing up to 25 hours a week with American Ballet Theatre. Months after returning from a summer spent training in New York City with the company, Madison (or Maddie, as she prefers), began to feel exhausted to the point of immobility. She initially wrote her fatigue off as repercussions of her rigorous exercise routine, but in December of 2006, tiredness nearly forced her to do something she was raised to never consider: quit.

“I was preparing for The Nutcracker, and I found myself completely unable to handle the training,” she said. “I told my director that I wasn’t going to be able to perform, which my parents were not pleased with. I was raised to not give up, and to keep going. So I did. I stuck with it and made it through the performances that year, but it took all that I had. We just didn’t know something was seriously wrong.”

The next month, Maddie was routinely coughing up blood and bedridden from extreme exhaustion. Her parents took her to Rockingham Memorial Hospital in their native Harrisonburg, Virginia, and she was soon transferred to the University of Virginia medical school hospital 60 miles away in Charlottesville.

Hours after arriving at the hospital, Maddie, still just 11 years old, was diagnosed with Primary Pulmonary Hypertension, a chronic disease that causes irregularly high blood pressure in the arteries of the lungs.

Give and Take

Soon after diagnoses, Maddie was given an intravenous pump that some PH patients are required to wear to help combat their illness.

There are many types and stages of PH, and the stage in which an IV is required is typically reserved for the most severe cases of PH. Despite this, being hooked to an IV pump wasn’t the greatest of Maddie’s concerns.

In November 2008, months into her freshman year of high school, Maddie went to the Children’s Hospital of Pittsburgh, where she was told she needed a lung transplant. While on the waiting list, Maddie was instructed to avoid all forms of exercise, a notion she found mentally crippling.

“I had to stop dancing,” she said. “Dancing was such a big part of my life. That was the hardest part about my diagnosis – it took away what I loved the most.”

In the months spent waiting for a transplant, Maddie and her family prepared as best they could, going as far as to secure air travel should the call for new lungs ever come through.

“A man who owns an airport in the area offered to fly my mother and I to Pittsburgh for the transplant whenever we got the call,” she said. “The drive from Harrisonburg to Pittsburgh is about five hours. Which is just too long to wait for lungs.

In January of 2009, nearly two years after first being diagnosed, Maddie received the call she was waiting for, a moment she has trouble articulating to this day.

“When the call came in that my lungs were waiting, it was the oddest feeling,” she said. “I wasn’t scared or sad or nervous. I was ready. It’s hard to describe, but I was honestly not trying to think too much about it. I was 13, so I was pretty young, and I knew that if I kept myself distracted, I could hopefully keep myself from getting scared.”

19

Caring Voice Community editor, Alex Withrow, interviews Maddie Shinaberry at the Edith J. Carrier Arboretum at James Madison University in Harrisonburg, Virginia

“My transplant gave me back a part of my life that I thought was missing. I try to take everything day by day and take nothing for granted.”

Maddie and her mother flew to Pittsburgh, and she was immediately taken into a 12-hour surgery, where both of her lungs were replaced with healthy organs.

Awakening in a fog brought on by heavy sedation, Maddie said she doesn’t recall much in the days following her surgery. She did what she was told, dutifully abiding by the doctors’ orders – relaxing, taking medication, eating healthy, and so on. Seven short weeks after her transplant, she got the chance to do what she had dreamed of doing since her diagnosis.

“I didn’t want to leave Pittsburgh without dancing,” Maddie said. “My recovery was very quick and successful, so before I went back home, I was able to take a class with the Pittsburgh Ballet Theatre. That was my immediate goal, to dance with that company following the surgery.”

Returning home in April 2009, Maddie began attending high school full time again, and even joined a local dance company.

Life, as she puts it, regained a sense of normalcy she hadn’t experienced in years.

Making the Change

During her sophomore year of high school, Maddie was disheartened by the lack of organ donation education in her driver’s education class. In fact, she says the topic wasn’t even broached.

“Teachers have the option of discussing organ donation in driver’s education,” she said. “My teacher decided to not go over it, which really surprised me. Organ donation saved my life, and I wanted to inform as many kids as possible. So I decided to do something about it.”

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caringvoice.org • Fall 2012

In January 2010, Maddie enlisted the help of Richard Bell, the delegate of Virginia’s 20th district, to propose legislation that would amend Virginia high school curriculum. Maddie’s proposed bill would require freshman high school health classes to spend a minimum of 30 minutes dedicated to organ donation education.

In Virginia, provided that a child is old enough, a student can receive their learner’s permit before entering their sophomore year of high school, making driver’s education classes more or less moot. Maddie felt that freshman year was the best time to reach as many students as possible.

“All kids take a health class when they’re a freshman,” Maddie said. “Delegate Bell and I thought that was the best time to capitalize on organ donation education.”

Maddie spent nearly two years shaping the bill with Delegate Bell. She shopped it around to various delegates and senators as a means of gaining support, and in January of this year, her legislation was proposed to the General Assembly before the House Education Committee in Richmond, Virginia.

Although the legislation ultimately failed to what Maddie cites as a “series of unfortunate miscommunications” between various organizations, she and Delegate Bell have elected to redraft the proposal.

“Instead of a legislative mandate, we are going to ask the Virginia Department of Education to amend high school curriculum to increase awareness of organ donation,” she said.

“So it’s really a proposed change, instead of a mandate.”

A New Normal

Today, her health care consists of daily medications and routine trips to Pittsburgh for testing.

And that’s essentially Madison Shinaberry’s life until now. She’s been diagnosed with an incurable disease, risked her life to rid herself of said disease, and advocated tirelessly to increase awareness about something that saved her life. And she’s done it all with a humble, articulate demeanor, all part of her life philosophy that she credits to her upbringing and past health experiences.

“My parents raised me to not let things get me down,” she said. “My transplant gave me back a part of my life that I thought was missing. I try to take everything day by day and take nothing for granted.”

“I was warned by doctors that the quality of life might not improve as much as I would hope following my transplant,” she said. “But for my case specifically, I can honestly say that is not true. I have freedom now. The IV pump was very difficult to manage. Everyday things were extremely difficult. Exercise was out of the question. Now I can swim, I can dance again; the care now is so much less involved than it was with the PH.

Maddie dances on Whalehead Beach in Corolla, North Carolina mere months after her transplant surgery

In September 2012, Maddie began attending Washington and Lee University in Lexington, Virginia, where she was accepted on a full scholarship based on leadership and merit. She plans on studying business and finance, with a minor in politics, and has every intention of continuing her organ donation curriculum work with Delegate Bell.

“Along the way, I’ve met many people who are going through similar situations as I have been through. And I’ve constantly had to remind myself that there’s always someone who has it at least a little bit harder then I do. I’ve never felt like it was my place to say that it was difficult enough to give up.”

A healthy philosophy to live by. It’s certainly worked for her so far.

LUNG TRANSPLANTS BY THE NUMBERS Information courtesy of The International Society for Heart & Lung Transplantation, and the national Heart, Lung, and Blood Institute

5%

6.6

of double lung transplant patients that have had chronic obstructive pulmonary disease (COPD)

Years of median survival for double lung recipients

26%

of double lung transplant patients that have had chronic obstructive pulmonary disease (COPD)

3,168

Total number of lung transplants reported from July 1, 2009 through June 30, 2010

78%

Percent of patients who survive the first year after a transplant

1983 Year that the first successful long-term single lung transplant was preformed

51% of patients who survive five years after a transplant 21

ect the n observational program set up to coll rive n-d icia clin a is y istr Reg PP TO The ients s and treatment details of pediatric pat medical history, diagnostic procedure n. diagnosed with Pulmonary Hypertensio or after years at diagnosis, and diagnosed on s-18 nth mo 3 s age ts, ien pat ic iatr Ped ients ertension, are eligible for inclusion. Pat January 1, 2001 with Pulmonary Hyp sician. ndard care as determined by their phy sta eive rec will y istr Reg the in d include ease Registry are to: The main objectives of the TOPP Dis at time of racteristics of Pediatric PH patients Describe the socio-demographic cha dent cases. diagnosis for both prevalent and inci at PH diagnosis.

Determine co-morbidities before and time of PH diagnosis.

Determine PH therapies ongoing at an type before PH diagnosis.

Determine referral pattern of physici racteristics at PH diagnosis.

Describe the associated clinical cha der, etiologic the pattern of treatment by age, gen r, nne ma tive crip des a in ine erm Det type, other covariates. . ns among pediatric patients with PAH ditio con ted ocia ass of rate the ine Determ gression to outcome.

Determine differences in disease pro Pediatric upon invitation by the Association of Participation in the TOPP Registry is the ive Board of the Association reviews Pulmonary Hypertension. The Execut ation is ticip kes the decision as to whether par applications for participation and ma accepted. to run at . Initiated early 2008, it is expected ject pro rm g-te lon a is y istr Reg PP The TO least until 2014. n. For more for Pediatric Pulmonary Hypertensio Information provided by Association ssociation.org/registry. about the TOPP Registry, visit peph-a

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caringvoice.org â&#x20AC;˘ Fall 2012

CONTRIBUTE. Caring Voice Community is continually looking for advertisers who want to reach our loyal readership with their products and services. For questions, comments or inquiries regarding advertising or editorial content, please e-mail magazine@caringvoice.org for more information.

It’s time to renew your CVC grant for 2013!

Keeping lives on course.

Bank of America Merrill Lynch is proud to support Caring Voice

Please visit www.caringvoice.org and click “Renew Now” to complete your renewal application online.

Coalition. We salute the many caring individuals and organizations who are teaming up to support those in need.

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Lending, derivatives, and other commercial banking activities are performed globally by banking affiliates of Bank of America Corporation, including Bank of America, N.A., member FDIC. Securities, strategic advisory, and other investment banking activities are performed globally by investment banking affiliates of Bank of America Corporation (”Investment Banking Affiliates”), including, in the United States, Merrill Lynch, Pierce, Fenner & Smith Incorporated and Merrill Lynch Professional Clearing Corp., both of which are registered broker-dealers and members of FINRA and SIPC, and, in other jurisdictions, by locally registered entities. Investment products offered by Investment Banking Affiliates: Are Not FDIC Insured • May Lose Value • Are Not Bank Guaranteed. ©2012 Bank of America Corporation ARW3H1W1 | BB-137-AD

Are you Medicare eligible?

The annual open enrollment period for Part D prescription drug plans runs from October 15 through December 7.

If you would like assistance choosing a plan, go to www.caringvoice.org and click “Annual Coordinated Election Period” to fill out a medication list and start the process.

Catching Up with the R.E.M. Runner Photo by Matt Spaulding

I

Writing Therapy How the act of writing can relieve the heaviest of burdens By Julie Flygare

f you sit down to write a memoir, bring Kleenex.

Tears will come.

Three years ago, I set out on a raft in the ocean – or close enough, I set out to write a memoir. Living with Narcolepsy was hard, but far from boring. I wanted to open people’s hearts to this little known and often misunderstood disorder.

I was clueless about the literary world – agents, publishers, editors, the media, and so on – and I knew the process of writing and publishing wouldn’t be easy. Regardless, I clung tightly to my creative non-fiction background and fighting spirit, and decided to go for it.

Now, three years later, I’m finishing the final touches on my manuscript for publication. Looking back, the process was harder than I ever imagined, at times maddening and seemingly impossible. The only other life-challenge I can compare this to is the one I wrote the book about!

So, was it worth it?

Writing the first draft was euphoric. There’s something empowering about stringing together words, sentences and paragraphs for the first time. Narcolepsy had stolen my sense of control, and writing about it helped me to retake the reigns.

The more I wrote, the more I realized the significance of what I had been through. That’s when the tears came.

When I was initially adjusting to the disease after being diagnosed, I didn’t have time to reflect. Living with a chronic illness, there aren’t really times set aside to “look back” on one’s experience. Because I live with a chronic disease, my experience, by definition, is still going.

Yet, with time, I gained enough balance and emotional energy to begin rummaging around in the cobwebs of my memory. In writing this book, I discovered experiences I’d

24

caringvoice.org • Fall 2012

actually erased entirely from my mind and others that I’d tried to forget as a means of moving on. Unfortunately, I wasn’t as forgetful as I’d hoped.

Often, we don’t realize the burdens we are carrying around until they are lifted. Interestingly, polygraph technicians have found that criminals’ heart rates and pulses slow substantially directly after making a confession.

Studies of various populations have shown that writing about past traumas makes people happier and healthier, even by objective standards such as long-term serum measures, antibody levels, cell activity, enzyme levels, and muscular activity.

Although traditional talk therapy is invaluable too, writing has some unique benefits.

Writing may stimulate areas of the brain not enthused by talking. It’s theorized that speaking may be more related to the right hemisphere, while writing may be more of a left hemisphere activity.

Also, admitting something on paper first is often easier than saying it out loud. Emails, letters written to oneself, essays, poems, and blog posts all count. Writing a memoir is perhaps an extreme example.

My editing process brought many more tears than I ever imagined. Each time I reread my story, I am, in a sense, reliving it. I often feel like I’m living two lives with Narcolepsy, my current one and my past one.

Yet, along the way, I’ve built great new memories and made wonderful friends who keep me motivated and inspired. The day I touch my published memoir will be a dream come true.

Without a doubt, it was worth it. I couldn’t write Narcolepsy out of my life, but I could shape it into something beautiful, something honest and true, something of my own to share with others. For more, visit julieflygare.com

Wide Awake and Dreaming an excerpt

Julie Flygare’s soon-to-be published memoir, Wide Awake and Dreaming, documents, in part, her struggle to identif y and cope with Narcolepsy while attending law school. Here is a brief excerpt from the opening pages of her book.

We were only a few weeks into our first semester and our note taking was mostly word for word lecture transcription.

I was still learning to interpret the language of the law, so I followed along, typing every word that crossed my professor’s lips, afraid I might miss a key point that would be the difference between an A and a B, the divide between getting the big fancy job I wanted and being rejected.

Yet, on this particular day, my desire to record every word of class came up against another, equally strong desire – a dark and unwelcome compulsion to go to sleep.

Halfway through the class, a heaviness came over my head. A weight sat on my skull. Next, my shoulders and elbows began to ache as a wave of nausea crawled up my stomach. I shifted in my chair to find a more comfortable position and stretched my head to one side to the other, hoping to dislodge the uneasiness swelling inside me.

25

BREAKING DOWN SOCIAL SECURITY DISABILITY Part 3: Appeals Process

S

ocial Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits provide an important safety net for thousands of Americans.

Nonetheless, the SSDI benefits application and appeals process can be quite daunting. The more you know, however, the better your chance of presenting your application in the best possible light. Do your research and keep yourself informed about the SSDI appeals process. Most importantly know where to turn if you need support and guidance.

Social Security cases will be denied for either medical or technical reasons. Denials often occur because there was not enough medical evidence presented to the Social Security Administration (SSA) to prove the case. However, some applicants instead receive what’s referred to as a “technical denial.” When a disability applicant receives a technical denial, this means they were found ineligible for benefits for non-medical reasons (and the SSA didn’t even review the medical evidence). A few examples of technical denials include, earning too much and not working long enough to have paid enough to be covered under the Social Security disability program.

Starting the appeals process for SSDI or SSI after the initial application stage is simple. First, contact SSA and inform the agency of your desire to initiate the appeal. Doing this will put SSA on notice that you have requested an appeal within the deadline and it will prompt SSA to send you the appropriate appeal forms.

Always make sure to file the request for consideration within the 60-day deadline from the date of the denial or Request for Hearing for some select prototype states. It is important to accompany your appeal with any updated information since your initial

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caringvoice.org • Fall 2012

by Nicole Zatkoff

Nicole Zatkoff has been working in the Insurance Education and Counseling department at Caring Voice Coalition since June 2011. As part of the IEC team, Nicole helps assist patients with insurance appeals and with applying for Social Security Disability.

filing. Mail into SSA any updated medical records of recent visits to your physicians.

You can only prove the severity of your impairments through medical evidence, therefore, it is important you receive regular medical treatment. The more medical, physical or mental examinations you have, the better off you will be in substantiating your subjective complaints of pain and functional limitation.

Although, the Social Security Disability process creates a long and winding path for many individuals to travel, it is important to stay positive.

Statistically speaking, disability denials are, unfortunately, what most disability claimants can expect to receive after they file a claim for benefits with SSA. Statistics indicate initial claims have a denial rate of approximately 65 percent. Reconsiderations (the first step of appeals) are denied at an even higher rate (up to 85 percent).

Although these numbers seem alarming, it is important to not become discouraged.

Disability claimants should never resign themselves to giving up on a SSI or SSDI claim. The moment a claim is denied, that means you can appeal, and the sooner you appeal, the sooner Social Security will schedule a hearing, which gives you the

best chance of winning your claim. At the hearing level, nationally, more than half of the Administration Law Judge hearings are won by disability claimants. If you have been denied benefits, it is especially helpful to have an attorney or advocate to make your case for you. Having a professional handle your case can raise your chances to 60 percent.

Although, the Social Security Disability process creates a long and winding path for many individuals to travel, it is important to stay positive. Since, the Social Security Administration does take a long time to decide your claim, it is important to use that time to learn as much as you can and get help with your claim if need be. Statistics show there is light at the end of what may seem to be a dark journey. If you have questions or have received a denial feel free to contact Caring Voice’s Disability Department.

Next Quarter:

What happens after you’ve applied for Social Security Disability?

Visit caringvoice.org to download Caring Voice Coalition’s free guide to understanding your disability as defined by the Social Security Act

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Balancing

Your Budget A Necessary Evil (Because nobody said it would be easy.)

W

hen you seriously commit to a weight loss plan, one of the first messages you hear is, “Write down what you eat.” It is a proven strategy to understand what, how much, and when you eat so you can plan a healthier diet. How can you lose weight if you can’t remember what you ate for breakfast? Balancing your budget starts with the same type of strategy, “Write down your monthly income and expenses.” By tracking what you earn and how you spend it, you can begin to control credit card debt, identify impulse purchases and make progress towards a balanced budget. Ask yourself, “Do you really know where your monthly paycheck is going?” How can you balance your budget if you don’t know where you spend your money?

As you analyze your monthly spending, think about any unnecessary expenses you may be willing to eliminate. Can you reduce your cable bill by eliminating some of the “extra” channels and/or cutting back to basic service?

Do you still need to pay for home phone service if you have a cell phone with long distance? How often do you eat out per month? Can you cut back on expensive meals? In addition, think about replacing some of your restaurant, movie and/or shopping expenses with free events. You can visit many state museums free of charge. Look for free local concerts, art shows, music festivals or an educational lecture. Some of these simple changes could save hundreds of dollars per month.

At the same time, revisit your long-term contracts on insurance policies, gym memberships, cell phone service, cable service, lawn-care service, HVAC maintenance, pest control services, and internet service. Do you still need the service, and is the contracted fee still a good deal? Can you renegotiate the monthly contract price if you have been a long-term customer? Can you “bundle” policies or services to save on the monthly rate? If you decide to cancel the service, always make sure you can get out of the contract without additional fees. If not, plan for when the contract expires and set a reminder for yourself to cancel when you won’t incur a penalty.

Next, look at your highest out-of-pocket monthly costs; normally mortgage and auto payments. Usually these fixed costs are much harder to change, but current interest rates are the lowest they have been in more than 40 years. If you purchased your home more than four to five years ago, prior to the collapse of the US housing market, and still have a significant balance to pay,

by Rebecca App

you may consider refinancing to lower your monthly payment. The same principal applies to your car loan. Research your credit score, current interest rate, and loan balance. Depending on these three factors, it may be to your benefit to search out a new lender with lower rates and refinance your loan.

Last, but most importantly, the most critical part of balancing your budget is to get out of debt. Cut up individual store credit cards that normally have outrageous monthly interest rates,

As you analyze your monthly spending, think about any unnecessary expenses you may be willing to eliminate.

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caringvoice.org • Fall 2012

and use one major card.

Work towards paying your outstanding credit card balance in full every month to eliminate high interest charges. If you are carrying balances on several cards, consolidate all of the debt to one major card with the lowest interest rate and get rid of the other cards. Then, make a commitment to pay off the remaining balance as quickly Rebecca App is a Virginia CPA with as possible. While you are experience in both public practice paying off the balance, try to and the non-profit industry. She served as Director of Finance exclusively use your debit card has for CVC since May 2005. for monthly purchases. This will force you to have cash available and to consider whether or not the expense is a true need or simply an impulse buy.

If you don’t know the best way to get started, begin with an internet search. The web is full of tools to help you manage your budget. Free budget planners are available for download in Excel; mortgage and car loan calculators are also available, as well as many free apps for your smartphone including budget and banking apps.

Nobody said it would be easy. Balancing your budget will take time, energy, research and possibly sacrifice. However, even if only a few of the strategies work for your specific lifestyle, you may be surprised how your savings start to add up.

How will

you

remember

Caring Voice Coalition?

Charitable giving begins at anytime in oneâ&#x20AC;&#x2122;s life.

Consider where your assets go and include Caring Voice Coalition in your estate planning. Contributions, including gifts and monies, help to ensure that CVC continues to provide financial assistance and additional resources to aid in the journey of our patients.

We can help you explore a variety of possibilities for making a significant gift to Caring Voice Coalition.

Simply contact Rebecca App, Director of Finance, at 888-267-1440, ext. 106 or finance@caringvoice.org.

29

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31

A look at the different people involved in the life of a patient diagnosed with a chronic illness.

A patient’s journey is not an easy one. There can be many obstacles a patient must overcome to receive the proper care and treatment.

There are more than

240 Pulmonary Hypertension

support groups in the U.S.

Family Members Provide the Daily Setting for Patient SelfManagement. Family and friends

No one can make the journey alone.”

already affect patient self-management, since daily eating, physical activity, and even stress management happen in the setting of social activities and relationships.

Caring Voice Coalition

Source: “Sharing the Care: The Role of Family in Chronic Illness”

by Ann-Marie Rosland, M.D., M.S.

Pam Harris, President,

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caringvoice.org • Fall 2012

Caring Voice Coalition Family

Physician Specialty Pharmacy Support Group

Forming a Winning Care Team

by Pam Harris

An illness is not something you want to face alone. Processing information, making decisions and taking appropriate action can sometimes be too overwhelming without support. Decision making is far more difficult when you’re overwhelmed with tension and anxiety. That is why assembling your personal Care Team should be among your top priorities.

The purpose of a Care Team is to help you meet the major challenges you face with your disease. The right friends and loved ones can promote your health and well-being just by their presence, listening sympathetically to your fears and hopes, and enhancing your sense of calmness amid the storm of emotions incited by your diagnosis. Your Care Team can bring you clarity and peace of mind as your move towards recovery.

The members of your Care Team must be capable of providing you with five basic forms of support – emotional, practical, informational, coaching and decision-making. You therefore need to choose people whose personalities and coping styles make them well-equipped for a particular role.

1. Emotional Support – Think of people in your life who are best equipped to help you feel less overwhelmed and more empowered. In all likelihood, your emotional supporter will be someone who has been a loving friend or relative for many years – a spouse, sibling or close friend or relative. Someone who can provide a safe non-judgmental space for you to express your feelings. Someone you can confide in.

2. Practical Support – Your disease can be all-consuming, so much that it can become difficult to take care of your daily existence. The person you want in this role is a doer. Think of people who are great at organizing and are generous enough to help. Since one of the possible functions of this person is to accompany you to the doctor, they should be good at listening and taking notes, since medical appointments can involve complex rationales that may be tough to understand.

3. Informational Support – Thanks to reliable sites such as patient organizations and the National Health Institute (NIH), much of what you find online can be enormously valuable, helping you regain a sense of control over your disease and treatment. The person on your Care Team who provides informational support doesn’t need to have a medical degree, but must be able to grasp and assimilate new and complex information. You need someone to help guide the discussion with your doctors in order to prepare questions such as: • Why do you advise this treatment or medication at this time?

• What are the possible side effects?

• What will you do to counteract side effects?

• How often is the medication taken?

• What is my cost that is associated with the treatment or medication?

Support groups are a great way to meet others who are on the same journey as you, experiencing similar challenges. Patient associations can be helpful with finding a support group in your area.

After each visit, determine whether you feel satisfied with the type and amount of information you received. If you think things should have gone better, work with your information person to refine your questions and approach. Don’t be afraid to follow-up on an office visit or hospital procedure with a telephone call if you’re left with unanswered questions.

4. Coach – This person pushes you to attend support group meetings and helps keep up your exercise regime and generally keeps you on track toward recovery.

5. Strategic Planner – The final member of your team is someone with in-depth knowledge of your disease and therapy who can guide you in your decision making process. This person is typically your doctor, nurse, pharmacist or some other person who has intense medical knowledge and experience of treating your disease.

You may have needs I have not thought of. Your needs will fluctuate as you move through your treatment and disease process.

I would ask that you stop periodically to express your genuine gratitude for the special care your Care Team generously provides to you each day.

33

Meet Alpha-1 Association’s New Genetic Counselor

By Alex Withrow

In June, Sara Wienke was brought on as the newest Genetic Counselor for Alpha-1 Association’s Genetic Counseling Program. A recent graduate of the University of North Carolina, where she received her master’s degree in genetic counseling, Wienke talked with Caring Voice Community about the role a genetic counselor plays in a patient’s treatment.

What is genetic counseling?

Genetic counseling is a process to help patients understand Alpha-1, understand what options for testing are available, who in their family may need testing, provide resources, and so on. One of my main goals is to promote decision-making as well as selfefficacy to act as an advocate for their own healthcare.

As a genetic counselor, what role do you play in a person’s life after they’ve been diagnosed?

It varies from person to person and what their specific situation is. A lot of times, people get tested and their doctor doesn’t really explain what Alpha-1 is, so people call me asking what the disease is, if they should worry about their kids – things like that. I assist them with the process of finding out what Alpha-1 is, explaining their test results to them, and I usually get very comprehensive family histories from them so I can identify who would also be at risk and need testing.

On the flip side of that, sometimes I have parents calling whose children have been diagnosed with Alpha-1. Parents are usually much more panicked, so I try to arm them with facts about Alpha-1, that way they can feel more in control about what they need to do.

Do you recommend that family members get tested if someone related to them has Alpha-1?

In general, yes. But it depends on the person. One of my roles is to talk to people about the pros and cons of testing and how it might benefit their life and their family.

Is most of your counseling done over the phone?

All of my Alpha-1 counseling is done over the phone. It’s generally one phone call to the patient, explaining the test results and what to expect in the future.

What is a typical phone call like?

I usually start by asking how much they know about Alpha-1 – what have they read online, what’s their overall understanding, things like that. Then I talk about the genetics of Alpha-1 and discuss the testing available to them. There is a research study, the ACT Study, that does free confidential testing, and that is something I advocate to the patient, especially if they’re concerned about genetic discrimination.

Can you talk a little about genetic discrimination?

Well, it is a concern right now. There was a law passed in 2008 called the Genetic Information Nondiscrimination Act (GINA), which protects people who do not have symptoms, but have predictive genetic testing, from being discriminated against by health insurers and by employers. So I do talk about GINA and its limitations, one being that is was passed four years ago, and has never been tested in court.

Alpha-1 Association’s Genetic Counseling Program can be reached at 1-800-785-3177.

Explaining GINA From the U.S. Equal Employment Opportunity Commission (EEOC) and the U.S. Department of Labor, Genetic Information is defined as…

• Genetic information includes information about an individual’s genetic tests and the genetic tests of an individual’s family members, as well as information about the manifestation of a disease or disorder in an individual’s family members.

• The Genetic Information Nondiscrimination Act of 2008 (GINA) took effect on November 21, 2009.

• Under GINA, it is illegal to discriminate against employees or applicants because of genetic information.

• GINA prohibits the use of genetic information in making employment decisions, restricts employers and other entities from requesting, requiring or purchasing genetic information, and strictly limits the disclosure of genetic information.

• It is illegal to fire, demote, harass, or otherwise “retaliate” against an applicant or employee for filing a charge of discrimination.

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caringvoice.org • Fall 2012

Going Strong

By Alex Withrow

The origins of the Alpha-1 Association aren’t unlike many other patient associations that support rare diseases – the strength and determination of a few spawn an organization that now cares for thousands.

Although it was established in 1991 by various Alpha-1 patients, the Alpha-1 Association’s roots stretch back decades earlier.

The Alpha-1 disease was discovered in 1963, and soon after, the National Institute of Health introduced a seven-year longitudinal study with patients so that everyone could achieve a better understanding of the disease. By virtue of patients participating in research studies together, they began forming support groups around the country.

From there, a snowball effect took hold. More support groups were formed, research was developed, patients were identified, and eventually, the Alpha-1 Association was formed.

“Essentially, patients wanted to form a national organization as a means of providing resources and leadership for all of the support groups,” said Marlene Erven, Executive Director for Alpha-1 Association.

“We were established in Minneapolis in 1991, and we’ve been going strong ever since.”

Erven started with Alpha-1 Foundation in 1997 as their development director. After building that organization’s resources for seven years, she felt the move to Alpha-1 Association was an appropriate one.

“We want [patients] to go out to their communities and do whatever is needed to spread awareness about this disease.”

“We work together and collaborate so that we don’t duplicate programs and services,” she said. “Overall, I feel that the Alpha-1 community is very well served.”

According to Erven, Alpha-1 Association currently has roughly 80 support groups throughout the country, all of which have a tasked focus of creating awareness about Alpha-1. In addition to making support group attendees more aware of their disease, Erven stresses the importance of educating the outside world as well.

“We encourage every Alpha-1 patient to create awareness within their family,” she said. “We also provide patients with Alpha-1 information that they can give to their various health care professionals. We want them to tell their friends about it. We want them to go out to their communities and do whatever is needed to spread awareness about this disease.”

Erven said that she and her staff have already completed plans for the next year, which will primarily focus on developing specific programs for patients to have a continuum of care.

“We will ensure that we’re providing the information and educational tools that patients need from birth until death,” she said. “We want all people to be served. Whatever it takes to make that happen.”

Top and bottom: attendees of Alpha-1 Association’s 21st Annual National Education Conference. Inset: The Association’s Executive Director, Marlene Erven

“I thought there was a lot I could contribute in terms of program development and services,” she said. “All of which have actually now come to fruition. We have great new programs for patients every year.”

The Alpha-1 Association lists six goals on its website, which, along with the organization’s programs and services, are all based on the mission of the Association.

“Our mission is to identify individuals affected by Alpha-1,” Erven said. “And to also provide support, education, and advocacy to our patients and encourage participation and research. We set specific goals and objectives to accomplish every year, all based on that mission. I believe that we are meeting and exceeding our goals.”

For Erven, serving the Alpha-1 population comes first, which is why she feels it is especially important to maintain healthy, working relationships with not-for-profits like the Alpha-1 Foundation and AlphaNet.

For more information visit www.alpha1.org or call 1-800-521-3025

35

Next Issue:

In Their Words For our ensuing issue, we’re trying something a little different. We have a reoccurring column in Caring Voice Community titled In Their Words, in which we simply let a patient tell their story, from their point of view, void of narrative structure.

For our winter edition, we’re going to expand the idea and fill the entire issue with patient stories, direct from the source.

Interested in being featured in our In Their Words issue, please email magazine@caringvoice.org to set up an interview. We’re always looking for new stories to tell.

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caringvoice.org • Fall 2012

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Please consider donating to Caring Voice Coalition, and in return, we will dedicate ourselves to providing pertinent, educational content through this publication. Thank you very much for your generosity.

Donations can be mailed to: Caring Voice Coalition 8249 Meadowbridge Road Mechanicsville, VA 23116 888-267-1440 www.caringvoice.org magazine@caringvoice.org

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COMMUNITY Volume 1 • Issue 1 • Spring 2012

The Quarterly Publication of Caring Voice Coalition Inc.

WHY THIS

4 issues for $10.00. Visit our website at www.caringvoice.org or email magazine@caringvoice.org

MAN

IS NOT

A HERO A 9/11 Rescue Worker Living with Pulmonary Hypertension

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IN THIS ISSUE: trinity hamilton: dancing cirque du soleil with narcolepsy the battle between patients and medical compliance overcoming stress in the face of chronic disease the healthcare reform act: a timeline leading pulmonologist question and answer tips for your spring workout understanding your social security disability and much more

Volume 1 • Issue 2 • Summer 2012

Diary of a R.E.M. Runner Julie Flygare’s Fight for Narcolepsy: From the Streets of the Boston Marathon to the Steps of Capitol Hill

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Breaking the Cycle:

A Caregiver’s Generational Battle with HD

Your Guide to Summer Travel The Psychology Behind Medication Adherence The Quarterly Publication of Caring Voice Coalition, Inc.

Have you missed past issues of Caring Voice Community?

We’ve received a handful of inquiries that readers on our mailing list did not receive the first issue of the magazine. You can view every edition digitally at CaringVoice.org, or please feel free to email magazine@caringvoice.org and we’ll send you back issues right away.

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