COMMUNITY Magazine, Winter 2014 - Travelling for Treatment by Caring Voice Coalition

COMMUNITY Volume 3 • Issue 4 • Winter 2014 • The Quarterly Publication of Caring Voice Coalition, Inc.

Traveling T 6 for

reatment

Low- and No-Cost Trips for Patients & Families

Terrific Winter Recipes!

Reaching out with Idiopathic Pulmonary Fibrosis Living with Cutaneous Lymphoma PLUS

Disability Glossary and More!

How will you remember

Caring Voice Coalition? Planned Giving You can make an extraordinary difference in the lives of others by making a planned gift to Caring Voice Coalition. Remembering Caring Voice in your will or trust is a simple way to leave a lasting legacy. Contributions including cash, appreciated securities, or a charitable bequest help to ensure that Caring Voice continues to provide financial assistance and patient support to aid in the journey of those with chronic illnesses. Your donations are fully deductible for estate tax purposes. For more information on how you can include Caring Voice in your estate plans, please contact: Rebecca App, Director of Finance 888-267-1440 ext. 106 financedept@caringvoice.org

Weâ&#x20AC;&#x2122;re Here to Help.

CONTENTS

WINTER 2014/2015

The Traveling for Treatment Issue

4 Contributors’ Page 5 Editor’s Letter 6 President’s Letter

9 CVC Close Up

CVC Senior Finance Manager Nicole Reynolds describes how paying patient claims fuels her passion for helping people.

11 Your New Normal

In the first of a four-part series,

certified educator and health coach Colleen Brunetti offers patients a guide to becoming more than their diagnosis.

12 Newsmaker Q&A

Community discusses pulmonary

thromboendarterectomy (PTE) with Nicholas Smedira, M.D., cardiothoracic surgeon at Cleveland Clinic, who has performed the greatest volume of the surgeries in the Midwest.

14 Back to Life

Dennis Redman Sr.’s cutaneous T-cell lymphoma diagnosis arrived on the heels of the loss of his home

in Hurricane Katrina, a broken back, a massive heart attack, and unemployment.

16 Patient Association Profile

Patti Tuomey, Pulmonary Fibrosis Foundation president and COO, details how the organization helps patients and families.

18 A Place Like Home

When patients and families must travel long distances for medical treatment, hospital houses and transportation nonprofits can help alleviate financial and emotional stress. Community gets the details on medical travel support around the U.S.

26 Winter Feast

These tasty, nutritious recipes are designed to warm your winter world.

30 Legal Corner

Lauren Patrizio, CVC patient advocate, explains common disability terms.

32 Fight Club

Following her diagnosis of idiopathic pulmonary fibrosis, Sandra Rock came out swinging, and swing dancing.

Cover photo: Flair Images

Staf f

Publishers

Editor in Chief

Pamela Harris pharris@caringvoice.org Samantha Harris sharris@caringvoice.org

Eva Leonard 888.267.1440, ext. 105 eleonard@caringvoice.org

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.

Director of Communications

Graphic Design & Illustration

Jennifer Previtera 888.267.1440, ext. 141 jprevitera@caringvoice.org

Anthony Nesossis 888.267.1440, ext. 174 anesossis@caringvoice.org

Please recycle this issue.

Contributors Colleen Brunetti Colleen Brunetti is a certified educator and health coach. Diagnosed in 2008 with a critical lung disease, Brunetti also works as a patient advocate and leader in her patient community. In 2014, she published her first book, Defining Your New Normal: A Guide to Becoming More Than Your Diagnosis, written to inspire patients of all walks to take control and guide their own health outcomes.   Steve McHugh At Cured restaurant in San Antonio, Texas, chef and owner Steve McHugh uses fresh, local ingredients and organic methods to create cured and pickled foods. McHugh has also worked as chef de cuisine at Besh Steak, and at Metro Bistro and August restaurants in New Orleans. Diagnosed in 2010 with lymphoma, McHugh is now in remission. His restaurant’s name references recovered health. Lauren Patrizio CVC Patient Advocate Lauren Patrizio assists CVC patients in navigating the various stages of the Social Security disability application process. She also drafts appeals for insurance coverage of specialty medications and provides support to CVC’s appeals and disability team. A graduate of Virginia Tech University and Roger Williams University School of Law, she is a member of the Virginia State Bar. In her free time, she enjoys making chocolate-covered strawberries for her coworkers and running, swimming, and biking. Dennis Redman Sr. A former special agent with the Katrina Fraud Unit, Dennis Redman Sr. was diagnosed with cutaneous lymphoma in 2013. He enjoys working with the Cub Scouts, collecting and painting miniature soldiers, and spending time with his wife, Barbara, and his grandchildren. Sandra Rock After Sandra Rock was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2001, she started IPF support groups and advocated on behalf of IPF research and funding. Rock enjoys swing dancing with her husband, Jim, art festivals, theater, antiquing, theme park rides, and spending time with her family. Nicholas G. Smedira, M.D. Nicholas G. Smedira, M.D., is a staff cardiothoracic surgeon in the Department of Thoracic and Cardiovascular Surgery and former director of quality for the Sydell and Arnold Miller Family Heart and Vascular Institute at Cleveland Clinic in Cleveland, Ohio. He is board-certified in thoracic surgery. Cleveland Clinic performs more than 4,000 heart surgeries each year. Of these, Dr. Smedira performs approximately 375 surgeries per year. Dr. Smedira has participated in more than 8,000 heart operations since 1995, including 350 heart transplants and more than 1,500 septal myectomies. He has the greatest volume of pulmonary thromboendartectomies in the Midwest. Jennifer Stack Jennifer Stack is an associate professor of liberal arts at the Culinary Institute of America (CIA), in Hyde Park, New York, teaching nutrition and food safety to students in the college’s degree programs. A registered dietitian and a certified diabetes educator, Stack is a 2003 CIA graduate and also holds a Master of Science degree in nutrition from New York University. Brant Tesky Brant Tesky is executive chef of Acadiana restaurant, serving contemporary Louisiana cuisine, in Washington, D.C. Both sets of Tesky’s grandparents owned farms, influencing his passion for fresh, seasonal food.

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

Community Editor’s Letter Eva Leonard

Some patients with rare and chronic illnesses are fortunate enough to live near the medical centers where they receive treatment. For those who must travel long distances for medical treatment, however, concerns about the costs of transportation and lodging can add to already considerable stress. Fortunately, networks of nonprofit organizations work closely with medical

centers across the U.S., providing low-cost or no-cost lodging to patients and their families who are far from home and in need. Other nonprofits work to

provide inexpensive or free transportation, including flights, train and bus tickets,

or respite housing that gives patients and families much-needed getaways from the world of hospitals, tests, and doctors.

In this issue of Community, we focus on three such organizations that provide

support for patients and families traveling for medical treatment. That treatment

can include clinical trials, transplants, and other types of medical care. The article also includes contact information for numerous hospital and respite houses, as well as transportation providers across the country.

These organizations’ dedication to providing a homelike environment is

complemented by individual volunteers, local groups, and corporations that

contribute time and resources, from meals to local transportation and tickets to

area attractions. Patients and families also often find support and community among other guests of the homes who are dealing with the same struggles.

As communities come together to help those who were once strangers, Caring

Voice Coalition wants you to feel at home with us, too, and to know that we are

here to help in any way we can. In the words of the poet William Butler Yeats:

Photo by Charlie O᾽Donnell

“There are no strangers here; only friends you haven’t yet met.”

CVC President’s Letter Pam Harris As the holidays approach, 2014 nears its end, and I complete my eleventh year as president of Caring Voice Coalition, I am moved to reflect on this year’s accomplishments. 2014 has been an extraordinary year, and it’s a privilege to be a part of this remarkable organization and experience firsthand all of the blessings that occur within our midst each and every day. This year, we experienced a record enrollment, surpassing 22,000 grants, and a

record fund-raising year, with more than $82 million pledged and donated, all to

support patients within the 20 disease funds that CVC supports. I was extremely pleased to learn that The NonProfit Times rated CVC among the best national charities

to work for, for the third year in a row. All of these developments are indicators of an organization on the move, and our progress is a tribute to the many supporters of CVC.

As you celebrate this season, I hope that one gift you look forward to receiving is our

Community magazine. Keeping you informed with insightful interviews, educational

articles and inspiring patient stories is one of our main goals. While many of us continue to face health issues and challenges, I believe our unified strength lies in the hope and inspiration of learning from each other through our medical challenges and struggles.

For me, December is always a blur. From the moment Thanksgiving dinner is cleared

from the table, my “2015 To-Do List” starts to build in my head. That list contains both personal and work tasks to be accomplished by the end of 2015. Although my list continues to grow each day, I thrive in the knowledge that its sole purpose is to lessen the financial burdens of those individuals living with a chronic illness.

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

Photo: Taylor Scott

Wishing you and your loved ones a peaceful holiday and healthy New Year.

CVC COMMUNITY

We’d like to hear from you! Email your feedback and questions to: magazine@caringvoice.org Thank you, CVC, for your help. It is so very appreciated! Also, thank you to all of you on the phone — you are so nice, and I am grateful for your concern and compassion every time I speak with one of you. — Susan Waddington Stanley Powell Butte, Oregon

Readers’ Comments

a signature, and they had all the billing information. I think travelers needing oxygen at their destinations should be careful with weekend arrivals. The article gave me courage to travel. It was great! Thank you! — Judith C. Connor

Thank you, CVC, for approving me for continued financial assistance in 2015. We really believe the medication helped in my treatment for pulmonary hypertension. I really enjoy reading your Community magazine. The article on travel made my husband and me decide to fly to Florida from Pennsylvania. There is a new hang-up when getting oxygen delivered. My concentrator and tanks could not be delivered to our hotel without a signature. We arrived on a Saturday. The oxygen company told me to call and they would deliver my supplies. I called. They were too busy to deliver on Saturday— no oxygen. They delivered the supplies Sunday morning! That can be devastating to some people — just for

York, Pennsylvania

The story you did on me in the fall issue of CVC’s Community magazine is touching so many. I’m getting all kinds of positive feedback. It’s amazing how many are out there living what I live. In October, I spoke at Senator Mark Warner’s office in Washington, D.C., to raise awareness for alpha-1 antitrypsin deficiency. I also wrote a letter to the governor of Virginia, Terry McAuliffe, and got the proclamation yesterday: November is now Alpha-1 Awareness Month in Virginia, and my local TV station is doing a story on this. Thank you all for all your help and support. — Sherry Gochenour

Penn Laird, Virginia

IN YOUR WORDS Your words can make a difference. You can inspire others and let them know that they’re not alone when you share your story with the CVC community. You can share what’s important for new patients, caregivers, and medical professionals to know about living with rare and chronic illness. And you can tell other patients how you came to CVC and what your experience has been. Contact us by phone, email or online. PHONE

(888) 267-1440

WEBSITE

magazine@caringvoice.org http://bit.ly/CVCshareyourstory 7

Donate to Support Community Magazine Your contributions help fund Caring Voice Coalition’s quarterly Community magazine. We’re dedicated to providing supportive content in Community and on the CVC website, both for patients living with rare diseases, and for their caregivers. Please consider donating to Caring Voice Coalition’s Community magazine. Please use the attached donation envelope to send your tax-deductible contribution to Community. We greatly appreciate your generosity.

Subscribe to Community Magazine COMMUNITY Volume 2 • Issue 3 • Fall 2013 • The Quarterly Publication of Caring Voice Coalition, Inc.

Children

+ Creativity

The Art and Life of Paul Klee Alpha-1 Advocate Len Geiger’s Photography HDYO’s Creative Expression

Plus

Pediatric Lung Transplant Q & A—Thomas Spray, M.D. Children’s Health Insurance Program Pediatric Narcolepsy And More

CVC’s Community magazine, published four times a year, is packed with helpful information for patients, caregivers, and health care providers. Every issue features patient profiles, interviews with medical experts, information on support groups, and in-depth coverage of health care and legal topics that affect those living with rare and chronic illnesses. Get a year of Community magazine—four quarterly issues—for only $10. Subscribe to Community online at: www.caringvoice.org/?p=4035 or send the completed form below with a check for $10 payable to Caring Voice Coalition: Community Magazine Subscriptions Caring Voice Coalition 8249 Meadowbridge Road Mechanicsville, VA 23116

Community Magazine Subscription Name Street Address City, State, Zip Code (Please write "Community Magazine Subscription" in the memo section of your check.)

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

Close Up

Nicole Reynolds CVC Senior Finance Manager

Photo by Charlie O’Donnell

IX YEARS AGO, WHEN I FIRST CAME to CVC, I was looking for a position with

a non-profit, having worked for more than a decade in a residential center for women. My work had to be meaningful, and I wanted to team with people who understood the value of service. My mother and father are largely responsible for instilling the qualities that influence my work at CVC. Mom had great compassion for and connection with people; she was generous and shared with those in need. She would take me along to nursing homes to play an old piano and sing. We shared our home with international students and with missionaries doing really tough work in orphanages around the world. Mom cooked for and spent time with friends who were ill. Dad taught me how to be interested in people and the world around me. He instilled the value of hard work, discipline and passion for the work. He inspired my imagination and helped me become a problem solver. Having raised four children has made me a thankful and determined person and has brought joy and humor into my life. It has helped me to be down to earth. One thing I love about young people is that they will tell you the truth as they see it. I have been described as a free spirit, a communicator, and someone who has a strong work ethic. I can also be stubborn, which means I just won’t quit until the answer is found, or the problem is solved.

caringvoice.org • Summer 2013, The Healthy Eating Issue

In Finance we help our patients by paying the copays for expensive medications. We do the accounting for CVC as a nonprofit and communicate regularly with pharmacies and patients around the country. Paying claims is an exciting job. It’s energizing, because it is something I can do for another person, something that could lift their burden in some way. That person may as well be my own neighbor, my child, or my grandparent. I work on the patients’ behalf with this in mind each day. In my spare time, I like to be outside as much as I can. My family enjoys hiking and spending time in the beautiful parks around Richmond. I love classic movies like “On the Waterfront,” and “Boys Town,” with Spencer Tracy and Mickey Rooney, or anything with Bette Davis. I enjoy talking with our patients. On each call, I find a person with qualities I can admire. It is important to me to make a connection with each person and their story so I am able to appreciate what is special to them. Our patients love life. They are courageous and deeply caring people. We share laughter, sometimes tears, faith and hope. Many times people want to express their appreciation to CVC. I thank our patients for sharing this part of their journey and for being an inspiration and an encouragement. If there’s one thing that I want patients to know about CVC, it’s that they can be themselves. They can freely ask any questions they have, because the person who will answer sincerely wants to help.

Join the Online CVC Community!

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Get support. Meet new friends. Share your stories.

Your free monthly email roundup of news, tips, and more, for CVC patients and caregivers. Sign-up at www.caringvoice.org.

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CVC’s Secure Website Created for Patients! Cloud 9 is Caring Voice Coalition’s free, secure online portal. Instead of calling Caring Voice Coalition, you can log onto Cloud 9 at any time to view and update your CVCrelated information, apply for assistance, and communicate with CVC representatives.

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• Real-time secure access

Click on Cloud 9 at www.caringvoice.org to register.

• Easily update your contact, address, medical, and insurance information • Apply for financial assistance • View current grant information and recent payments CVC has made on your behalf • Send medication lists, receipts and other documents securely

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

Defining The New Normal: A Guide to Becoming More Than Your Diagnosis This column is the first of a four-part series by Colleen Brunetti, M.Ed., C.H.C., based on Brunetti’s book, Defining The New Normal: A Guide to Becoming More Than Your Diagnosis.

O YOU REMEMBER THE DAY YOU

were handed your diagnosis? For many of us with a major illness, that moment is burned in our minds. I know I remember my own moment of diagnosis clearly. It was January 2, 2008. I can still see myself lying in that hospital bed just after a right heart catheterization. My husband was at my side, and a cardiologist was standing by my bed. He held a clipboard and wrote some words across the top. Then he leaned over and showed it to us. It read: “pulmonary arterial hypertension.” He then proceeded to tell us it was quite serious, that he couldn’t treat me, and that I would be going to a specialist as soon as possible. I don’t think I felt much of anything in that moment. Shock, I suppose. It took a couple of days for it all to sink in. I remember calling the cardiologist a couple of days later and asking him to go over results with me again. That was when things started to sink in. That is when I began to cry (and his voice cracked too). That is when things really turned upside down. We all have defining moments in our journey through chronic and critical illness. The moment of diagnosis is one of them. It is that moment, and the days and weeks that follow, that really set the stage for much of our journey to come as well. A major diagnosis is a tipping point. For some, it is finally an answer for mystery symptoms that have been misunderstood or unidentifiable, and that answer can almost be a bit of a relief. For others, it simply comes as a complete shock. Whatever your reaction, the way you internalize the news, and use that set of feelings to move you forward matters. It matters a lot. Many patients go through a sense of loss, some even experience emotional and perhaps physical trauma. The prevalence of depression among patients with a major diagnosis is not only significant, it is also completely understandable. This whole “life-long patient” thing is a really big deal. I am almost seven years into my own diagnosis. As I look back on how I first reacted to my illness, I realize it set the stage for how I moved forward throughout the next several months. I was devas-

tated. Feeling scared, depressed, desperate and a little angry rounded out the experience. At first, I let those feelings define me. I cried a lot. I didn’t care for myself very well. I retreated inward, and chose not to show from the outside just how rattled I had become. This reaction, while completely understandable, was also not very healthy. The process of mourning the loss of your health and the life you thought you had in front of you is a good one to go through (albeit potentially quite painful). I’m not saying we, as patients, shouldn’t spend some time in that process. We should. But there’s a fine line between feeling what you need to feel and falling down a rabbit hole that you don’t climb out of. Which leads me to my next defining moment— the moment when you choose to start taking radically good care of yourself— mind, body, and soul. I remember that moment really clearly too. We can thrive, not just survive, with a diagnosis. We are way more in control of our journeys than medical literature or a thick chart of test results and doctors’ appointments can define. So many other pieces come into play when you are defining your journey as a patient. There’s the food we eat— that matters a lot. There’s a spiritual walk— whatever that means for you. There’s a sense of self— built around how we feel about our education, our ability to work (or not), our grasp of how our diagnosis impacts finances. There’s the support of family and friends — and how we navigate the changes that sometimes come when we have to learn to relate to people in new ways because of our diagnosis. And so much more. Defining The New Normal: A Guide to Becoming More Than Your Diagnosis, explores all of this, and leads you through exercises to define these moments for yourself. Over the next several months, we will also explore a few of these topics together here in this column. I hope you enjoy the journey! Defining The New Normal: A Guide to Becoming More Than Your Diagnosis is available in print on amazon.com and on all major digital readers. Visit www.definingthenewnormal.com to learn more. 11

NEWSMAKER Nicholas Smedira, M.D., Cardiothoracic Surgeon, Department of Thoracic and Cardiovascular Surgery, Cleveland Clinic

Community recently spoke with Nicholas Smedira, M.D., cardiothoracic surgeon at Cleveland Clinic’s Department of Thoracic and Cardiovascular Surgery, about pulmonary thromboendarterectomy (PTE) as a treatment for chronic thromboembolic pulmonary hypertension (CTEPH).

When did Cleveland Clinic first start doing PTE, and what are some of the advances that have been made in the procedure? When I arrived here, 20 years ago, the surgeons were already doing acute and chronic pulmonary emboli treatments in the operating room, so definitely 20-plus years.

What are some of the biggest challenges for the surgery and the biggest potential risks for patients, and how do you overcome those challenges? One is that the arteries, beyond where the clots have lodged, have been damaged and become thickened, such that, even when taking the clot and scar out, they still have residual pulmonary hypertension. So, we go through great efforts, using CT scan, angiography, and other modalities, to make sure that the extraction of the material will improve the pulmonary hypertension. That’s probably our greatest challenge. The two things that can happen during surgery are that the lung tissue, beyond

Above: Miller Family Pavilion, Cleveland Clinic, Cleveland, Ohio

The surgical technique has remained more or less the same for the last twenty years. The biggest improvements have been in the supportive care of the patients before, during, and after the operation, protecting their lungs, their brain, and their kidneys from any damage from the stress of the surgery. The biggest strides have been in helping patients recover. 12

where the blockages have been, all of the sudden see new, excessive blood flow, and they can develop some edema. It’s called reperfusion pulmonary edema (RPE), and that happens in maybe about 10 to 15 percent of cases. Finally, the conduct of the operation requires us to cool the patient’s body, and for periods of time, stop the circulation, so

caringvoice.org • Winter 2014 • Traveling for Treatment Issue

there’s no blood circulating in the body — that’s called circulatory arrest, and we again go through great efforts to protect the brain, so that there’s no damage to the brain, so that there’s no stroke. Succinctly, the three things we think about are residual pulmonary hypertension, injury to the lung after the scar has been removed, and some sort of brain injury.

Are there other protections involved? We give medications, steroids, and certain drugs to protect the brain. We monitor the brain activity, but cooling is the predominant mechanism. What sort of benefits have you seen with successful surgery? If you get all the material out, and there’s been no downstream thickening of the arteries, patients’ pulmonary artery pressures return to normal. You can’t tell the difference between a healthy person and someone who’s had this operation. Their exercise capacity and functional capacity return to normal. Their right ventricle that has been under strain returns to normal. So, it’s a curative operation, when there’s been no downstream damage to the pulmonary vessels.

Is the damage something that you know about before the surgery? Sometimes the angiogram will give you a hint that there’s a problem — when you don’t really see a lot of obstruction or material in the arteries, but their pressures are very high, suggesting that this is small vessel, rather than large vessel disease. But some patients have a combination of both, and they have a lot of material in the arteries, and so you think, well, boy, there’s a large volume of material to get out, but they’ve also developed downstream damage, and it can be hard to differentiate. If you don’t see a lot of material and you have high pressures, you surmise that

it’s probably small vessel, but when you see a lot, that’s when it can be difficult to absolutely sort out which of the two is predominating. After a successful PTE, could a patient’s prognosis potentially be that of somebody who never had PH? Yes. That’s true.

How often does Cleveland Clinic perform PTEs? We’re on track to do about 30 this year. We do 25 to 35 or so annually.

What do you think are some of the most important things for patients and caregivers to know about preparation for PTE, the procedure itself, and recovery? I think the most important thing is to go to a center that has a dedicated team that specializes in the treatment of CTEPH. One or two lung issues may be present at the same time, like COPD, or sarcoid, or some other pulmonary process, so a patient should be seen at a center that has a comprehensive, multispecialty approach. And then the best preparation for the operation is really one of just staying in the best shape the person can. If they smoke, they should stop smoking, and they should diligently maintain their anti-coagulation. But really, it’s seeing the team of experts who can evaluate all the things that go into having this problem. Does [the patient] have a clotting disorder? Could they potentially have a cancer that formed the clot? What are their lungs like? How strong is their heart? And that takes a very large team to figure out. What are some of the other medical centers in the U.S. with similar expertise to Cleveland Clinic’s? The team with the greatest experience in the world is UC San Diego. They’ve been pioneering and doing this for many years. Duke and Massachusetts General also have teams focused on this disease. We’re with the biggest in the Midwest at Cleveland Clinic. (See sidebar this page)

What might recovery after PTE look like? It varies from patient to patient. We’ve had patients that are out of the intensive care unit in two days and home in a week, and I’ve had patients, who, when they have either residual pulmonary hypertension, or they have some wetness of the lungs, remain in the intensive care unit for a

week or so, and then in the hospital for another week or two. So, it can be a little bit longer, so I tell the patients, ‘We’ll know within the first 48 hours which category you fall into, but anticipate at least a week, sometimes two weeks.’ Then the remodeling of those arteries and the full resolution of the pulmonary hypertension can take upwards of a year. We have seen patients from whom we extracted large, large volumes of material. The pulmonary pressures were over 100mmHg. In the operating room, they’re down to about 50mmHg, but over the course of the next six or seven months, they return to normal. And as that happens, the patient’s exercise capacity increases, and they notice a marked improvement. But I inform patients, that, in some folks, especially if they’ve had clots for many, many years, it could take a full year for a complete response. What are some of the other aspects of the operation that add to its complexity? From the surgeon’s perspective, you’re trying to peel a layer of scar (it’s usually scar by the time we get there) off a wall that is, maybe, one to two millimeters thick. So, you have to be in the absolute perfect plane of where the scar is, because if you’re not deep enough, you don’t take the constricting material out, and if you’re too deep, you can go right through the thin wall of the pulmonary artery. It’s one of the hardest operations I do, in the sense that, it has to be perfect, and you have very little margin for error. From the surgeon’s perspective, it is a daunting operation, under time pressure, but it’s very rewarding when you get all the material out. What else do you think patients who are getting ready for PTE, or considering it as a viable option for a better or a longer life, should know? It’s curative, so if they have the opportunity to have the operation, they should have the operation. It’s better than any other therapy that we have available right now. Go to a center that has a dedicated set of doctors to take care of these patients and who have experience. That’s what I would suggest.

PTE

Medical Centers Medical centers in the U.S. that perform PTE include the following: Brigham and Women’s Hospital Boston, Massachusetts 617-525-9733 http://bit.ly/BrighamHospital Cleveland Clinic Cleveland, Ohio 800-223-2273 http://bit.ly/ClevelandCTEPH Duke Medicine Chronic Thromboembolic Pulmonary Hypertension Program Durham, North Carolina 888-275-3853 http://bit.ly/DukePulmonary Massachusetts General Hospital Pulmonary Hypertension and Thromboendarterectomy Program Boston, Massachusetts 617-724-3705 http://bit.ly/MGHpulmonary Mayo Clinic Pulmonary Hypertension Clinic Rochester, Minnesota 507-284-2522 http://bit.ly/MayoPulmonary New York-Presbyterian Hospital/Columbia University Medical Center New York, New York 212-304-7810 http://bit.ly/ColumbiaPH UC San Diego Health System Cardiovascular Services San Diego, California 858-657-7000 http://bit.ly/UnderstandingPTE University of Maryland Medical Center Baltimore, Maryland 1-800-492-5538 http://bit.ly/MarylandPTE

In Your Words

Back to

Life

Now thriving at work and in life, Dennis Redman Sr. battled a broken back, the loss of his home in Hurricane Katrina, a massive heart attack that left him clinically dead, unemployment, and cutaneous T-cell lymphoma.

WORKED FOR NASA SECUrity for over three years when I stepped in a hole while doing defensive tactics and broke my back from the fall. This was a couple of months before Hurricane Katrina hit, August 29, 2005. Katrina devastated our area. We lost our home and lived in a FEMA trailer for 18 months while we were rebuilding. While this was all going on, I had two back surgeries. Since I was out of work for so long, my employment with NASA was terminated. Physically, I was unable to work because of my back, and eventually we received a small settlement. This got us through for about two years. I was getting my strength back and felt I was able to go back to work. I really needed to, because the cost of rebuilding right after Katrina skyrocketed. Before I was able to find another job, I had a massive heart attack. This was on June 21, 2008. Around 7 p.m., my wife, Barbara, was bringing me to the hospital (I refused an ambulance, because I did

not think it was too serious), and about five miles before we got to the hospital, my heart attack started. Of course, I do not remember any of this, but Barbara clued me in later on. She told me that she was doing 100 mph on the interstate when the heart attack started. When she got to the exit leading to the hospital, she said she almost panicked because she had to pass through seven traffic lights. It was a main road in Slidell, Louisiana. Although she was aware that she could go through the lights, she knew it would slow her down. At this point, Barbara noticed I was not making any more sounds, and she knew that I was dead. God was definitely with us, because all seven lights were green, even the one where she had to make a left to the ER, and nothing was coming the other way. When she pulled up to the ER and started beeping frantically, they came running and got me out of the car. They knew I was dead at that point. They hurriedly got me inside and started working on me and I was revived for the first time.

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

Around 7:30 p.m. my cardiologist co-worker happened to be on duty in the ER. I coded again and he took over and shocked me six times. After the sixth time, one of the nurses gave a prayer and I was shocked for the seventh time, and it revived me. Later on, we asked the doctor why he kept going (I’m glad he did), and he said there was something about me that wanted to live. After recovering, I had to go back in November of the same year and get a pacemaker and a defibrillator. That was another three-month recovery. I wanted to get back into the work force, but found out that I was limited in what I was able to do. I was fortunate enough to get a job with the state of Mississippi as a special agent with the Katrina Fraud Task Force. I was only with them for one year, 2010, because the federal grant expired. I was unemployed until February 13, 2014, which happens to be my birthday. I got a job with a security company, working locally, and after three months, I was promoted to lieutenant as a patrol supervisor.

Later on, we asked the doctor why he kept going (I’m glad he did), and he said there was something about me that wanted to live.

Photos: (Opposite page) Dennis Redman with his wife, Barbara, at the Cub Scout Pack 2 Blue and Gold banquet. (Above) Redman’s miniature soldiers. Redman as a special agent with the Katrina Fraud Unit.

I found out I had cutaneous T-cell lymphoma cancer about one year ago. A year prior to that, I had a rash on certain parts of my body — mainly under my arms. The rash continued to get worse.... with cracking, bleeding, redness and severe itching. It was also painful. I called my dermatologist to refill the cream that she had prescribed for me when it looked like an ordinary rash. She said I needed to come in, because it has been one year since I was there. After examining the rash, she said she would have to biopsy it. The biopsy confirmed that I had T-cell lymphoma cancer, and I was then referred to an oncologist. After he reviewed my reports, the oncologist referred me to a doctor at Tulane Medical Center in New Orleans, who specializes in this type of cancer. She verified that I did have it and started me

on chemo pills and UV light treatments. After a couple of months on the chemo pills, they were not agreeing with me. They made me so weak that I was unable to get up once I was down, so the specialist changed my medicine. I was very frustrated trying to find the right medicine to work for me and it was also frustrating trying to work out affording the medicine. The doctor’s office contacted Caring Voice Coalition and a young lady told me all about the program. She is my patient advocate and told me not to hesitate to call her if I had any more questions. This was a big relief, because I felt like I was in good hands. I am very grateful for Caring Voice Coalition. What is important to me about this diagnosis is that it is not life threatening, as long as I keep up with my doctor and I am not afraid to try new meds, if one does not

work for me. My caregiver, my wife, Barbara, is very supportive and is there for me in any way she can be. She knows exactly what is going on and what meds I take and keeps me up to date with my doctor visits. I enjoy doing being involved with the Cub Scouts, going to church, socializing, whether it’s at the senior center of Picayune, or in line at Wal-Mart, and most of all, spending time with my wife and grandkids. I also volunteer to play Santa Claus at the Head Start Preschool, as long as I am able to, every year. One of my all-time favorite hobbies for the past 40 years or more is collecting and painting miniature soldiers. We’ve been through a lot in the past nine years. It’s been very difficult a lot of the times, physically, emotionally and financially. After every let down, we always kept the faith and were able to move on. 15

Patient Association Profile Patti Tuomey, President, COO Pulmonary Fibrosis Foundation (PFF)

How long has the Pulmonary Fibrosis Foundation been in existence, and who does the organization serve? The Pulmonary Fibrosis Foundation was founded in 2000 by two brothers whose sister succumbed to the disease. What began as a local effort to figure out how to help others with pulmonary fibrosis and understand the disease has rapidly grown into a nonprofit organization with national reach. Over the last four years, we’ve really expanded, both in terms of providing programming for patients, caregivers and their families, and by funding research. Our PFF Care Center Network and PFF Patient Registry support patients and caregivers and aid research that will hopefully one day lead to a cure. I came to the foundation about four years ago, having served in leadership roles in other nonprofit and philanthropic organizations. It’s a bit bittersweet, because pulmonary fibrosis has directly affected my family. Our CEO, Dr. Rose, and I felt we could take the organization to the next level. In doing that, we’ve been able to build a team that has diverse strengths, including a new medical team that joined us within the past year. We serve patients and caregivers, but a big question within our community is, what happens when patients pass away? The PFF is there for families as well. If you’ve experienced this in your family, you ask yourself, ‘Now what?’ What does that look like after someone has passed? So a lot of folks will hold

activities both in honor, and in memory of loved ones who have passed from the disease. A huge part of what we do is getting people involved. Our volunteers hosted nearly 140 events over the past year. When did you become aware that pulmonary fibrosis was in your family? My mom actually passed of it. I didn’t realize at first, because she was misdiagnosed. But by the time we found out, it was very quick. It was 10 weeks. Now, it’s six years later, and we’re still trying to sort through her medical records and see what happened. Unfortunately, misdiagnosis happens frequently. It’s important to identify the disease as quickly as possible so that the right medical and support teams can get into place fast. Research shows that a comprehensive team helps in extraordinary ways, from improving the quality of life to even slowing the progression of the disease. I was a pretty distracted caregiver. I had a two-year-old and a four-year-old and a dad with Alzheimer’s. I think my mother was trying to keep as much as she could to herself. I was just trying to do everything I could for all of them as well. I bring this knowledge to the PFF when planning programs to help the overall PF community, such as suggested guidelines for PF caregivers, so they know they need to take care of themselves in order to help their loved ones. Our doctors often tell people to think about the oxygen mask rule on the plane — first use the mask on your-

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

self, so that you then have the strength to help others. The same can be said for those helping loved ones with PF. What are some of the biggest challenges for PFF? It can be challenging to do everything we would like to help support the entire community. Some of the biggest challenges include raising funds for both disease education and research. The more we can share with the general public and the medical community about the signs of PF, the faster it can be diagnosed. We’re reaching people in a variety of ways, including live webinars and printed publications. And the more we can fund innovative research, the closer we get to discovering a cure. We’re very proud to have earned top honors from two organizations that serve as charity watchdogs. We earned Charity Navigator’s four-star rating, and we meet all 20 of the Better Business Bureau’s Wise Giving Alliance’s accreditation standards. People know that their donations to PFF are used responsibly. What are some of the things you do for PFF? What might a typical or an atypical week be like for you? As the COO, I wear many hats, like the engagement hat, which I really love, going to see the families and the patients. We try to go out as much as possible to meet folks in person and lend our support. In addition to administrative oversight, in a typical week, I might attend an educational event, meet with an industry partner, and talk with our medi-

cal team. I’m also always working to improve and expand our programming to better serve the PF community. When you meet with families and patients, what takes place? What do you discuss? Maybe because of what I’ve gone through personally, I listen. I like to listen a lot to what experiences people have. It’s a comfort to know that you are not alone. I want to know what people need from the foundation — whether it’s support programs or educational materials or awareness bracelets. What are some of the services that you feel are the most needed among pulmonary fibrosis families and patients? There are different ways that people can engage with us, based on their availability and preferences. They can call or email through the Patient Communication Center (PCC) at 844-TALKPFF or pcc@pulmonaryfibrosis.org. The PCC is the central information hub for patients, caregivers, and families. We have support groups, where sometimes patients and families find it’s more comforting or reassuring to share experiences or listen in an in-person environment. Others may prefer online support groups, and that’s important for people who perhaps can’t get out. Online support groups are for both patients and families. That is all complemented by our PFF Care Center Network, which provides the highest quality medical care and support services for patients and their families. Those who visit a PFF Care Center Network site have access to a multidisciplinary care team, pulmonary rehabilitation, support groups,

and educational materials and programs What do you think are some of the most important things for the newly diagnosed and their families to know? First of all, it’s important for them to know that they have a resource, and that’s what we try to be. We just redesigned our website to be more userfriendly and accessible to patients, caregivers and families. We know that a lot of people, once diagnosed with PF, want more information and oftentimes visit our website to learn more. We also offer an information kit, which includes our Pulmonary Fibrosis Patient Information Guide, which addresses topics, including defining pulmonary fibrosis, treatment and monitoring, and suggested questions to ask your health care providers. That’s also available online. What do you think is important emotionally for them to know? What I’ve learned in this position is that it’s very individualized. People have to know that we’re here to support them, and that we are going to listen to them. We can provide them with resources and knowledge in order to ask their physicians the right questions. They’re not alone. It’s almost like a one-two punch. You find out that this is happening, and then sometimes you go to tell people what you have been diagnosed with, and people haven’t heard about it. We’re working to raise awareness — this past September, we presented Global Pulmonary Fibrosis Awareness Month. We really push to get the word out, not only during the month of September, but every day of the year. This year, one of our PFF Ambassadors, Diane Reichert, created the very

successful “Blue It Up" awareness and fundraising campaign that challenged people to dye a streak of their hair blue for Global Pulmonary Fibrosis Awareness Month. The idea was to challenge others to ask, ‘What is pulmonary fibrosis?’ Kids, health care professionals, and friends jumped right in and took part, from as far away as Europe! It was a great way for people to bond globally and share knowledge. Another important program that we have instituted this year is the PFF Ambassador Program. PFF Ambassadors are a group of caregivers, patients, and health care professionals who share their stories and provide the latest disease information to audiences around the country. Do you refer patients to clinical trials? Earlier this year, we surveyed patients and caregivers and found that there is a lack of understanding about what the clinical trial experience is like. So we try to describe what the process looks like. It’s not for everybody, but we feel that we should be there to provide information. Those who are interested in learning more about clinical trials and how to participate can visit our website at http://bit.ly/PFClinicalTrials. What else do you think is important for people to know about PFF? We want people to know that the PFF is there for them — whether they have been newly diagnosed, or are caregivers supporting loved ones, or medical professionals who need additional information for their patients. We partner with the leading experts and organizations in the PF community to provide the best and most comprehensive resources to those who need them most.

PFF Contact Information Pulmonary Fibrosis Foundation 230 East Ohio Street Suite 304 Chicago, Illinois 60611

Tel. 888-733-6741 Fax 866-587-9158 info@pulmonaryfibrosis.org www.pulmonaryfibrosis.org

PFF Patient Communication Center (PCC) 844-TALK PF pcc@pulmonaryfibrosis.org 17

Traveling for Treatment

ome

A Place Like

Eva Leonard reports on the support that nonprofit hospital houses, respite houses, and transportation providers offer to patients who need longdistance medical treatment.

Above: The Children’s Inn at NIH (Photo by Randy Sager)

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

Lucca, chief program and services officer for The Children’s Inn at NIH. “And what and chronic illnesses, and that means is that they’re hoping for a cure their families, must travel long distances or a treatment for themselves, while also for medical treatment, concerns about the advancing medical discoveries for everybody. costs of travel, lodging, and food can amplify “The NIH treats the most rare and their already significant stress. difficult diseases, and so they participate Fortunately, a network of nonprofit hospi- in protocols for a wide variety of heart, lung tal houses, respite houses, and transportation and blood disorders, rare genetic diseases, providers exists to ease the financial and mental health disorders, and cancer,” emotional burdens of many patients and explains Lucca. families in need, at little or no cost. In this “For example, a child can be diagnosed article, we profile three such hospital house with leukemia, and leukemia has largely programs and a respite house program and become an illness that’s very treatable, but include contact information for programs the children that come to NIH would have found at some of the major medical centers a difficult to treat leukemia, where they’re in the U.S., as well as for nonprofit medical really participating in research for a hope for transportation providers. a cure. And there is also a large undiagnosed diseases program at the NIH—a lot of our The Children’s Inn at NIH kids are coming with symptoms, but they don’t have a name for their disease yet.” “I’VE TALKED TO PARENTS WHO’VE Since its Clinical Center opened in 1953, had to quit their jobs, because it’s a full- NIH has held thousands of clinical research time job to deal with their children’s ill- trials for rare and chronic diseases, includnesses. It’s a real hardship, financially and ing chronic granulomatous disease, pulmoemotionally,” says Dorie Hightower, media nary hypertension, thalassemia, idiopathic relations manager for The Children’s Inn at pulmonary fibrosis, cutaneous lymphoma, the National Institutes of Health (NIH) in childhood epilepsies, Huntington’s disease, Bethesda, Maryland. sarcoidosis, myositis, and Gaucher’s disease. “Some families are practically bankrupt “Parents typically find out [about The from traveling all over the country looking Children’s Inn at NIH] through their docfor different treatments, but when they come tors,” says Hightower. “But I hear quite a here, they’re just so relieved that everything few stories about parents who have done is free.” internet searches to find clinical trials. I even talked to a family who heard about the clinical trials through their school nurse. Oftentimes, because we’re research, they’re at the end of the line for the typical treatments, so they’re referred here. “Doctors have said that The — Dorie Hightower, Media Relations Manager, The Children’s Inn at NIH Children’s Inn has really empowered pediatric clinical research, Primarily sustained by donations, The because in the past, when people had to Children’s Inn at NIH is a nonprofit, free stay at hotels in the area, they weren’t able inn for pediatric patients involved in clinical to retain these families in clinical trials, trials at NIH and their families. Since it because it was expensive and inconvenient. opened in 1990, more than 12,500 seriously “There is no typical length of stay. Some ill children and their families have stayed people just stay a couple of days; others at the Inn, which can accommodate up to can stay for months. We’re right across the 65 families a night, at no cost to them. (A road from the NIH Clinical Center. You similar facility, The Edmund J. Safra Family could send a child back here to sleep, where Lodge at NIH, provides lodging at no cost you wouldn’t have felt comfortable sending to the families, caregivers and loved ones of them to an area hotel with an IV. They’re able adult patients taking part in clinical trials to stay here with their families, whereas on the NIH campus.) otherwise they would have had to stay in “What makes us unique is that all of the the hospital. kids that are staying with us are participating “Nobody here wears white coats. It’s a very in medical research at NIH,” says Jennie homelike environment. It’s a place to come HEN PATIENTS WITH RARE , life-threatening,

“Some families are practically bankrupt from traveling all over the country looking for different treatments, but when they come here, they’re just so relieved that everything is free.”

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back to after a long day at the hospital.” To that end, in addition to accommodations, the The Children’s Inn also provides a range of recreational, educational, and therapeutic programming for families. While the NIH takes care of the children’s medical needs, The Children’s Inn tends to their social and emotional needs. “We provide programs and services like financial support, grocery gift cards, therapeutic programs, and programs for caregivers,” says Lucca. “Families have reflected to me how much it helps them to talk to other people who are in the same boat, so it provides that kind of support to be here,” says Hightower. “Community or corporate groups come in two or three days a week and serve a homemade buffet dinner, or bring in food on those nights. We also have food supplies that are donated.” Although there are cafeterias at the NIH Clinical Center, Hightower says that part of the reason that there are kitchens rather than cafeterias at The Children’s Inn is that families like being able to fix their own meals and eat what they’re used to, because it gives them more of a sense of normalcy. A bus shuttle service takes families from The Children’s Inn to the grocery store and the mall. “We even have volunteers who are willing to go with them, for example, if a family doesn’t speak English well, and wants to go to the grocery store," says Hightower. "We provide a list of the international food markets in the area, and we really work very closely with the NIH Clinical Center.” “Every other Tuesday night, we have a bingo game, with prizes donated from the community. Activities can include trips to the ballpark and the circus. We have more than 200 volunteers and a lot of groups that help out.” Amenities at The Children’s Inn include a teen lounge, a game room, an exercise room, a computer room and business center for the parents, a computer area for the children, a playroom, and a recently redesigned playground that won an award from the American Society of Landscape Architects. “They thought of everything for children who might have different physical issues,” says Hightower. “There are all kinds of sensory things you wouldn’t see on a typical playground, so kids with all kinds of disabilities can go out there and have a great time.” “We have a house just outside of campus, the Woodmont House, where we can support another five to seven families, and those tend to be families who are here for a longer 20

Below: Playground, Children’s Inn at NIH, Bethesda, Maryland (Photo by Hoachlander Davis)

period of time,” says Lucca. “They’re no longer in the acute stage of the illness, so it’s a more transitional environment. They can be a little bit farther from the hospital. “We are trying to fully and consistently meet patient needs, and that means responding to the evolving clinical needs. Whatever is happening with research and families is where we’re going to grow our programming. “We have a pilot program called Isolate Inn. It’s a special program for kids who are on contact isolation. We’ve specially retrofitted four rooms at The Children’s Inn for those families, because if we didn’t have the rooms for the families, they would not be eligible to stay here. They would have to stay in a hotel. “As treatments get more aggressive, there will be more secondary infections like MRSA and C.Diff and antibiotic-resistant

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

organisms, and we will continue to look at that. We know that there’s more research going into stem cells and stem cell transplants, and so we likely will want to support those needs as well. “It’s such a difficult journey that families are on, so we try to reduce their stress as much as possible and support them. Hopefully when they walk through those doors they feel this sense of home. “Our mission is to reduce the burden of illness. We want them to be able to focus on what’s happening medically, and we try to take care of everything else.” Information on NIH clinical research trials and those held at other national and international research institutes can be found at http:// bit.ly/NIHtrials See the sidebar on page 25 for The Children’s Inn at NIH and The Edmund J. Safra Family Lodge at NIH contact information.

Below: Edmund J. Safra Family Lodge at NIH, Bethesda, Maryland

Nora’s Home for Transplant Patients and Their Families “NORA’S HOME IS ONLY FOR TRANS-

plant patients. That’s all we do,” says Kayla Lehmann, executive director for Nora’s Home for Transplant Patients and Their Families in Houston, Texas. Nora’s Home provides low-cost and no-cost lodging for pre-transplant and post-transplant patients and their families who travel to any of the Texas Medical Center transplant centers, conveniently located near the centers. With 21 hospitals, 7.2 million visits per year and 171,000 annual surgeries, Texas Medical Center is the largest medical center in the world, and Nora’s Home serves patients of its four solid-organ hospitals. Transplant patients who’ve stayed at Nora’s Home include those being treated for a broad range of illnesses, including pulmonary hypertension, idiopathic pulmonary fibrosis, and nephrotic syndrome. “We provide housing for patients who have had solid-organ transplants (heart, lung, kidney, and pancreas),” says Lehmann. “The heart and lung transplant patients have to be very near by when they’re waiting for the call. We’ve had patients live with us for three or four months before they get the [transplant] call. “It’s more than a place to lay your head. It’s a place of camaraderie, education and support. We really do believe that it aids in the healing. It’s more than just going to a

hotel room, where they’re alone. We provide education, therapy, and support groups. Nora’s Home also has a full kitchen and a volunteer program, “Chef for a Day,” with community members, groups, friends and family coming in to prepare meals for families. “It’s really nice, when they come home from clinic or from the hospital, there’s a warm meal waiting for them.” Post-transplant, Lehmann says, lungtransplant patients stay the longest. “It is very unique. They require a longer stay and a very strict protocol. They seem to be more

With 21 hospitals, 7.2 million visits per year and 171,000 annual surgeries, Texas Medical Center is the largest medical center in the world, and Nora’s Home serves patients of its four solid-organ hospitals. Transplant patients who’ve stayed at Nora’s Home include those being treated for a broad range of illnesses, including pulmonary hypertension, idiopathic pulmonary f ibrosis, and nephrotic syndrome.

susceptible to infection than most.” In an effort to balance availability, Nora’s Home has dedicated 10 of its 16 rooms as long-term stays. In those 10 rooms, some patients stay up to a year. “Some of the patients post-transplant develop low-grade viruses, and they need to stay near the Texas Medical Center six to eight months post-transplant. For each patient, it’s very unique. With our expansion, we will extend our long-term stay rooms.” Lehmann says cost is determined on a sliding scale. “Our cost per room is $75 a night, but we have a separate fundraising arm, Adopt-A-Family, and 95 percent of our patients use that fund. We ask what you’re able to pay, and we confirm it with your financial counselor, and your transplant coordinator. Ninety-five percent of our patients cannot pay the $75 per night, and then we tap into our fundraising arm to subsidize that cost. All of our fundraising goes to fund the patients’ expenses. Our community has been very generous with that.” Patients and caregivers form strong bonds and a sense of community at Nora’s Home. “Once we had a woman from Las Vegas who was here by herself for testing,” Lehmann recalls. “Other guests, who were the caretakers of family members staying at Nora’s home, accompanied her to every

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test for two days. They didn’t even know her. She ended up getting a transplant, and came back with a family member. “The minute you walk in the door, there is family, there is friendship, and there is a support system. We’ve all walked the same walk. The struggles are all the same. The support system is there to protect you and to help you navigate. You’re home. Your fears are lessened and your burdens are lightened. Below: Family room, Nora’s Home for Transplant Patients and Their Families, Houston, Texas

“What I’m hearing from patients is, it’s better than family, because everyone is trying to be so strong with their families, and the dynamics limit their sharing of their fears. And all of the sudden, you walk in to [find] that it’s ok to express your fears with someone who’s walking the same path as you.” Empathy is a big factor in the sense of camaraderie at Nora’s Home. As with any other support group, says Lehmann, “It’s: ‘Yes, I understand. Yes, I had that virus,’ or, ‘Yes, I’m taking this medicine. Yes, I can’t breathe,’ and, ‘Yes, I needed this oxygen.’ All these things that other people don’t understand. Or it’s that pat on the back that says it’s going to be ok. It lightens your load, and it’s ok to cry. It’s a very powerful place. “The fears are so strong, and I say this as a transplant patient. Four years ago, I had a kidney transplant. Nora’s Home hadn’t opened when I had my transplant. The first day, I went home from the transplant, and the week after, I had to go for my blood work at 6:30 in the morning, and then go back to see my doctor at 2 o’clock in the afternoon. “I was lucky. I went five or six miles to my home and took a nap, and had friends drive me back, and the same people that had the blood work were sleeping in chairs with their families, and my first comment was, ‘Oh my goodness — there’s got to be a place for these people to go.’” Hospitalized seven times in nine months after her transplant due to complications, 22

Lehmann saw the need for a facility like Nora’s Home up close. “People plan for a transplant, but when you get sick posttransplant, it’s life or death. You’ve got to get to the hospital, and you’ve got to take care of rejection or infection very fast. “These are the people who live 100 miles or a state away, and their wife can’t take off of work, or the kids don’t have daycare. These people were sleeping in their cars, and that’s where I really witnessed the needs. They have to stay nearby for their once- or twice-weekly treatments. The home away from home is necessary if they live too far away to travel back and forth. “We have 16 family rooms. I would say 85 percent of our patients have one caregiver [with them] at a time. Every family room has two queen-size beds to sleep four and a private bath. For the long-term stays, usually the caregiver or the family members will switch off; they’ll rotate to take care of a long-term patient.” Although Nora’s Home opened in November 2013, it is completely full, with a waiting list, with plans for expansion, both in the size of the facility, and in the types of transplant patients it accommodates. “Our plan is to fund the addition of another 20 to 24 rooms within the next 12 months,” says Lehmann. “We are discussing zero-air flow rooms for the post-lungtransplant patients. That would be another layer of protection for them.

education program, with a multi-tiered approach that’s going to be organ- and stage-specific. “We’re going to have outreach, so, for instance, if you’re the caregiver at home who’s responsible for the post-transplant protocol, we can teleconference you. Caregivers, we’re finding, are the forgotten link. They’re the backbone, and we’re really focusing on them, because many times they’re the make it or break it for the compliance. Many times the transplant goes 100 percent well, but compliance will be the reason the person or the organ makes it years down the road. “Many patients call in themselves when they’re coming in for transplant testing. There was a patient in New York, for instance, and his doctor for lung transplant basically said, ‘We can’t do anything for you. Go home.’ Someone had told him about transplants at Houston Methodist Hospital and said, ‘Give them a try.’ So he called us directly and made an appointment, and they transplanted him at Methodist. But he called us before he even got into Methodist. “Once they call us, we confirm with their transplant coordinator that they are coming in for testing. Let’s say they need a flight here. We have some other foundations that provide out-of-pocket expenses for transportation. We have Angel Flights (see sidebar on page 25). We have three or four nonprofits that provide bus fare. We don’t apply directly [for the patients]. We give them the information. Once they get to Houston, we have Ground Angels, and we get them to Nora’s Home. “Once they’re at Nora’s Home, we have free transportation every 15 minutes to the medical center. And then we also have pantry drives, so even if they don’t have food, we

“People plan for a transplant, but when you get sick post-transplant, it’s life or death. You’ve got to get to the hospital, and you’ve got to take care of rejection or infection very fast.” — Kayla Lehmann, Executive Director, Nora’s Home for Transplant Patients and Their Families

“We have MD Anderson Cancer Center here, which does stem cell and bone marrow transplants. Our board of directors will make a decision in December if we will include stem cell and bone marrow transplant patients, which is a whole other unique protocol. “As part of our expansion program, we’re building the Nora’s Home Transplant Life Center, and it’s going to be an international and national teleconferencing support and

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

have food for them. We have volunteers that help them navigate the Texas Medical Center, because it is pretty overwhelming. It’s pretty large. “It’s not a hotel. It’s a home-like environment. You share experiences, and you support each other. It’s a strong bond.” See the sidebar on page 25 for contact information for Nora’s Home for Transplant Patients and Their Families.

Left: Playroom, The Believe In Tomorrow Children’s House at Johns Hopkins, Baltimore, Maryland. Below: Living room, The Believe In Tomorrow House on Wisp Mountain, McHenry, Maryland

The Believe In Tomorrow Children’s Foundation Believe In Tomorrow Hospital Housing “PRIMARILY WE PROVIDE HOSPITAL

and respite housing for critically ill children and their families,” says Kate Sachs, communications director at the Baltimore, Maryland-based nonprofit Believe In Tomorrow Children’s Foundation. “We define a critically ill child as any child under the age of 17 who is fighting some sort of life-threatening illness. These might include transplant patients, cancer patients and a whole range of other things. “The hospital housing and the respite housing programs are separate from each other, so it’s a separate application process. Eligibility for each one is a little bit different.” In Baltimore, Believe In Tomorrow’s hospital housing program provides overnight accommodations for families of critically ill children being treated at the Johns Hopkins Children’s Center. “For this particular program, families have to be coming from at least 60 miles away,” Sachs explains. “We try to provide housing for those who really have to travel quite a distance to get there. Patients can be seen at Hopkins for a variety of illnesses. “ “If they’re having surgery, or treatment, or follow-up appointments with a doctor, any child who’s being seen at Johns Hopkins for some kind of life-threatening illness is eligible for housing here.

“There is no required cost. We do ask that families make a $20 per night donation. If they can’t afford that, we go to a lesser amount, and if they need financial aid, we can cover the rest of the cost. “Some people’s insurance companies will cover the cost, or families and friends will, so there are other options, but we don’t turn families away if they can’t afford to stay there.” Two buildings comprise the foundation’s hospital-housing program. The Believe In Tomorrow Children’s House at Johns Hopkins, across the street from the hospital, is its biggest facility, accommodating up to 15 families a night. “Stays range from one night to a couple of nights, to a couple of weeks, to occasionally, a couple of months,” says Sachs. “Whatever the family is there for, we try to accommodate their stay as much as possible. “For families that need a longer term stay, we have The Believe In Tomorrow House at St. Casimir in Baltimore, which originally opened for Hopkins bone marrow transplant patients. Bone marrow transplant patients, following the transplant, need to stay within 10 to 15 minutes of the hospital, so this building was dedicated to them. And then, occasionally, if we have an open room, we’ll take other long-term cases, like organ transplant patients and families.

“We do ask that families provide their own transportation. Sometimes families don’t have a car, or they don’t bring their car, because they’re flying in, so we have volunteer van drivers at the house who will pick families up from the airport or the train station and take them back there. If families need to go to the grocery store or the pharmacy, or something that’s not quite walking distance from the hospital, we have van drivers a few times a week, so families can sign up and get around. “Several different organizations in the city, like the Baltimore Aquarium, the Baltimore Zoo, and a lot of museums, including Port Discovery Children’s Museum, donate passes. So families can go out if they’re having a good day or they’re in between visits and get dropped off at one of these places and sightsee around Baltimore for a day. “Every family’s room is its own, with two queen beds and a private bathroom. So you really have your sense of privacy, but then there are things like shared TV rooms and playrooms, where you can go and relax and not have to be in a medical setting, but still be with your family. Sachs says the foundation would like to expand, as there is a growing need for more housing. “Even though the Children’s Hospital expanded last year to allow parents to stay in their rooms more comfortably

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Above: (Left) Kitchen, The Believe In Tomorrow Children’s House at Johns Hopkins. (Right) Master bedroom, The Believe In Tomorrow House on Wisp Mountain, McHenry, Maryland

The foundation’s f ive respite houses throughout the Mid-Atlantic region offer much needed, no-cost vacation lodging, providing a getaway for pediatric patients and their families who need respite during the child’s illness. with children, there are way more children than there are bedrooms. We try to help the sickest of the sick, and we try to have a balance between all the different departments in the hospital and different lengths of stays. “The environment is very homelike. Our mission is to keep families together and to keep the tradition of a family intact during a child’s treatment and diagnosis.” Amenities include laundry services, and two full kitchens that were redone last year, so that families can store food and cook meals. Volunteers lead activities and crafts and provide dinners five to six times a week. “The houses are very supportive,” says Sachs. “We really promote families interacting with one another. We often have families whose children are seeing the same doctors or are there for the same type of treatment. They can really connect and form relationships.” Believe In Tomorrow Respite Housing WHILE ITS HOSPITAL HOUSING

program is exclusive to patients of Johns Hopkins, The Believe In Tomorrow 24

Foundation’s respite housing is open to pediatric patients with life-threatening illnesses, from medical facilities across the country, and their families. The foundation’s five respite houses throughout the Mid-Atlantic region offer much needed, no-cost vacation lodging, providing a getaway for pediatric patients and their families who need respite during the child’s illness. Two houses in Ocean City, Maryland; one on Fenwick Island, Delaware; one in Western Maryland and another just outside of Asheville, North Carolina, offer accommodations ranging from bright waterfront beach house to cozy mountain lodge. “The respite housing has a little bit different criteria,” Sachs explains. “It’s a different application and referral process. Children are eligible up to one year after they finish treatment. So if a child completes a treatment, for the following year, they can still use our programs, but then we say they’ve graduated, and hopefully they’re on to bigger and better things, and we always hope that they’re in remission and in good health,” says Sachs.

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

“This is 100 percent free for families to use. They just have to provide their own transportation to be able to get to the houses and get around when they’re there, because not everything is within walking distance. And we ask that they provide their own meals. We do offer a lot of different discounts and coupons from the local businesses for meals and activities, and all of our families get a welcome basket when they get in. Two of the houses are dedicated (although not exclusively) to Believe In Tomorrow’s military initiative: the Believe In Tomorrow House On The Bay in Ocean City, Maryland, and the Believe In Tomorrow House at Pinnacle Falls, North Carolina. “Ten years ago, we realized that military families have extra stress when they have a child with a critical illness,” says Sachs. “One parent might be deployed, or they might have to travel really far to get to a military hospital, so in the middle of this crazy, crazy situation, throw on top all these military situations that compound the problem. We just want to make it a little easier for those families, so if a military family applies, they are prioritized at one of these two houses. “Families can come from anywhere in the U.S., as long as they meet the qualifications. If the family is willing to fly or drive, they are more than welcome to apply and visit our houses. We hope that they’ll make great memories, and then keep those memories forever.” See sidebar on page 25 for contact information for The Believe In Tomorrow Children's Foundation.

Traveling for Treatment

elow is a partial list of hospital houses, organizations, and travel providers in the U.S. offering low-cost or no-cost accommodation and transportation for long-distance medical treatment and respite for patients and families in need. Additional lodging and support services for patients and their families can be found via Healthcare Hospitality Network (see below), a nationwide association of nonprofit organizations.

LODGING Bannister Family House San Diego, California 619-543-7977 http://bit.ly/BannisterFamilyHouse For families of patients undergoing long-term care at UC San Diego Health System in Hillcrest and La Jolla. Rates start at $30 per night, but families can be sponsored. The Believe In Tomorrow Children’s Foundation 800-933-5470 http://bit.ly/BelieveinTomorrow The Believe in Tomorrow Children’s Foundation serves families with critically ill children, providing respite housing in Maryland, Delaware, and North Carolina, and hospital housing in Maryland for patients at Johns Hopkins and their families. The Children’s Inn at NIH Bethesda, Maryland 301-496-5672 www.childrensinn.org The Children’s Inn at NIH provides no-cost lodging for pediatric patients taking part in clinical trials at NIH and their families. Cleveland Clinic Transplant Hospitality Unit Cleveland, Ohio 216-444-8511 http://bit.ly/THUBrochure The Cleveland Clinic Transplant Hospitality Unit offers low-cost on-site lodging for pre- and post-transplant patients and their families. Family House Pittsburgh, Pennsylvania 412-647-7777 www.familyhouse.org Family House provides low-cost accommodations for patients seeking medical treatment at Pittsburgharea hospitals and their families, and offers a family assistance program for guests who may need additional financial support.

Above: The Believe In Tomorrow House on Wisp Mountain

Gift of Life Family House Philadelphia, Pennsylvania 1-865-6-FAMILY www.giftoflifefamilyhouse.org The Gift of Life Family House provides accommodation for patients receiving medical treatment at one of eight Philadelphia-area transplant centers, and their families. Gift of Life Transplant House Mayo Clinic, Rochester, Minnesota 507-288-7470 www.gift-of-life.org Gift of Life Transplant House provides low-cost accommodations for Mayo Clinic transplant patients and their families. Hackerman-Patz Houses 410-337-1000 http://bit.ly/HackermanPatz Hackerman-Patz houses provide short- and long-term housing for patients and families at medical centers in Maryland and Pennsylvania.

Above: Bedroom, The Children’s Inn at NIH

Healthcare Hospitality Network 800-542-9730 www.hhnetwork.org This nationwide network of nonprofit organizations provides lodging and support services for patients and their families. Hospitality Homes Boston, Massachusetts 888-595-4678 www.hosp.org Hospitality Homes offers short-term housing for families and friends of patients receiving medical care at Boston-area healthcare organizations, with volunteer host homes throughout the Boston area. JW House Kaiser Permanente, Santa Clara, California 408-246-2224 www.jwhouse.org JW House offers Kaiser Permanente Santa Clara patients’ families low-cost accommodation or daytime respite. ora’s Home for Transplant Patients N and Their Families Houston, Texas 832-831-3720 www.norashome.org Nora’s Home provides affordable lodging for pre- and post-transplant patients and their families who travel to any of the Texas Medical Center transplant centers.

Above: The Believe In Tomorrow Children’s House at Johns Hopkins, Baltimore, Maryland

The Edmund J. Safra Family Lodge at NIH Bethesda, Maryland 301-496-6500 http://bit.ly/SafraFamilyLodge The Edmund J. Safra Family Lodge at NIH provides free lodging for the families of adult patients taking part in clinical trials on the NIH campus. NorthWest Lung, Inc. Seattle, Washington www.northwest-lung.org NorthWest Lung provides low-cost and free housing near the University of Washington Medical Center for those needing lung transplants who are required to relocate to Seattle as a precondition to being placed on the transplant list. Ronald McDonald House Charities 630-623-7048 www.rmhc.org/what-we-do With 324 Ronald McDonald Houses in 32 countries and regions worldwide, Ronald McDonald House Charities provides accommodations at little or no cost to the families of seriously ill or injured children who travel for specialized medical treatment. TRANSPORTATION Angel Flight, Inc. Tulsa, Oklahoma 918-749-8992 www.angelflight.com Angel Flight provides free flights, donated by volunteer pilots, for long-distance medical treatment. Angel Flight has regional affiliates throughout the U.S. Mercy Medical Angels Virginia Beach, Virginia 1-888-675-1405 www.mercymedical.org This charitable medical transportation system provides free or discounted airfare, volunteer pilots, commercial bus transport, Amtrak tickets and gas cards for longdistance, and short and frequent medical trips, for patients in need and patient escorts. 25

east F Winter

Warm up this winter with these flavorful, nutritious dishes, from bite-sized snacks to hearty meals, served with holiday health in mind!

Photo by Jonathan Alonzo

Pumpkin and Pepper Salad with Goat Cheese Mousse and Preserved Celery Steve McHugh, Chef/Owner, Cured Restaurant, San Antonio, Texas

Chef’s note: Prepare the preserved celery 24 hours in advance. YIELD: Six servings For the Pumpkin

For the Goat Cheese Mousse

INGREDIENTS

2 each *small pumpkin or winter squash, peeled and cut into medium size chunks 1 tablespoon whole coriander, toasted and coarsely ground 1 tablespoon whole cumin seeds, toasted and coarsely ground ½ tablespoon kosher salt 3 tablespoons olive oil 1 cup piquillo peppers, sliced 1 cup pecans [for garnish] 1 cup celery leaves [for garnish] *Chef’s Note: Any type of winter squash can be substituted for the pumpkin. METHOD

Preheat oven to 350°F. Toss the pumpkins with the spice and salt and lay on a sheet pan lined with parchment. Bake in oven until pumpkin is cooked thoroughly but still has some tooth and has a touch of color. Approximately 15 minutes. Reserve the celery leaves and pecans for the garnish.

¾ ½ - -

cup goat cheese cup water To taste salt To taste pepper

METHOD

Mix the goat cheese with the water to thin out the consistency until it is spreadable. Season with salt and pepper. For the Preserved Celery INGREDIENTS

2 stalks celery, peeled and sliced into bitesized pieces 1 cup water ½ cup rice wine vinegar 2 tablespoons sugar 2 tablespoon kosher salt 1 teaspoon mustard seeds 1 teaspoon ginger, fresh ½ jalapeno, seeded and chopped METHOD

Combine the water, vinegar, sugar, salt, mus-

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tard seeds, ginger and jalapeno in a small pot and bring to a simmer. Pour over sliced celery and allow to sit for 24 hours. For the Dressing INGREDIENTS

¾ cup canola oil ½ cup olive oil ½ cup red wine vinegar 1 clove garlic 1½ tablespoons honey 2 tablespoons whole grain mustard - To taste salt - To taste pepper METHOD

Combine all of the ingredients and blend until smooth. Season with salt and pepper. T O P L AT E

Place a spoonful of goat cheese mousse on the bottom of each plate. Toss the pumpkins with the peppers and enough dressing to evenly coat salad and place atop the mousse. Garnish each salad with pickled celery, pecans and celery leaves.

Photo of Steve McHugh by David Rangel

TEVE McHUGH HAS accomplished much in his career— ten years in the culinary epicenter of New Orleans, working as chef de cuisine at August restaurant, and later, as chef de cuisine of Lüke in San Antonio — and most importantly, successfully battling cancer. At his San Antonio gastropub, Cured, McHugh uses natural ingredients and hands-on, unadulterated cooking to bring nutritious dishes to his menu, as with this recipe for anti-oxidant-rich and vitamin-packed pumpkin and pepper salad.

1 small head cauliflower separated into florets (about 4 cups) 1 quart low-sodium chicken broth ½ teaspoon kosher salt ¼ teaspoon freshly ground black pepper ¼ teaspoon ground nutmeg ¼ cup almond-cashew cream ¼ cup chopped parsley ½ cup sliced almonds

Cauliflower-Almond Soup, Served with Roasted Kale and Blue Cheese Crisps* Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York

Cauliflower and almond is a food match made in heaven. Using almond-cashew cream in place of regular heavy cream creates a rich soup without all the saturated fat. Almondcashew cream is sold in grocery store health food sections. YIELD: Four servings For the Cauliflower-Almond Soup INGREDIENTS

2 tablespoons almond oil 2 stalks celery, chopped (about 1 cup) 1 leek, white and light green parts, sliced (about 1½ cups)

½ cup blue cheese dressing (recipe follows) ½ teaspoon sea salt METHOD

Preheat the oven to 350°F. Tear the kale leaves into large pieces and toss with the blue cheese dressing. Place the leaves on a baking sheet lined with parchment paper and roast until the kale is dry and crispy, about 30 minutes. Toss with the sea salt and serve.

METHOD

For the Blue Cheese Dressing

Heat the almond oil in a large soup pot over medium heat. Add the celery and sweat until it begins to soften. Add the leek and continue to sweat until both vegetables are soft. Steam a few cauliflower florets and set aside for garnish. Add the remaining cauliflower, the broth, salt, pepper, and nutmeg to the vegetable mixture and bring to a boil. Simmer until the cauliflower is soft, about 10 minutes. Puree the soup in a blender or food processor. Stir in the almond-cashew cream. Serve each bowl of soup garnished with 1 tablespoon of the parsley, 2 tablespoons of the almonds, and a few of the reserved cauliflower florets.

INGREDIENTS

For the Roasted Kale and Blue Cheese Crisps

Heat the walnut oil in a sauté pan over medium heat. Add the shallots and garlic and cook until soft and lightly browned. Set aside. Puree the tofu, blue cheese, vinegar, lemon juice, pepper, salt, and shallot mixture in a blender or food processor. Thin the dressing with milk, if desired. Season with additional lemon juice and pepper to taste.

YIELD: Six servings

Curly or dinosaur varieties of kale work best for this recipe. INGREDIENTS

6 cups kale leaves, stems removed and packed 2 8 8 - - - -

1 tablespoon walnut oil 2 tablespoons minced shallots 1 garlic clove, minced package soft silken tofu (about 3.2 ounces) ¼ cup crumbled blue cheese 1 tablespoon red wine vinegar 1 teaspoon fresh lemon juice, plus more to taste ½ teaspoon freshly ground black pepper, plus more to taste ¼ teaspoon kosher salt - For thinning, nonfat milk (optional) METHOD

teaspoons garlic, minced ounces pork, ground ounces beef, ground To taste salt To taste black pepper 16 each empanada wrappers For frying peanut oil

Photo by Chris Granger

METHOD

Natchitoches Meat Pies with Black Pepper Buttermilk Dipping Sauce Brant Tesky, Executive Chef, Acadiana, Washington, D.C.

This hearty, comforting Southern dish is served with a creamy buttermilk dipping sauce. It can be baked instead of fried, and the filling can be substituted with chicken, turkey, pork or vegetables, based on preference, for a healthier result. YIELD: 16 Meat Pies INGREDIENTS

1 2 2 2

tablespoon olive oil tablespoons onion, diced tablespoons celery, diced tablespoons bell pepper, diced

In a large sauté pan over low heat, sweat vegetables in olive oil and, when translucent, add garlic. Cook another 3 minutes and add the meat. Continue to cook until the meat is browned. Drain the excess fat and cool on a sheet tray. Next, lay out the empanada wrappers and cut each into a square. Fill each wrapper with about 1 ounce of filling, sealing edges with a little water and using fork tines to finish. Meat pies can be baked or fried. To fry, heat oil to 375°F and fry for about 4 minutes, until golden brown. Carefully remove from oil and drain on a paper-towel lined plate before serving. To bake, apply an egg wash using the whites of 1 egg and bake on a greased cookie sheet at 350°F for approximately 15 to 20 minutes, or until golden brown. Serve alone or with the black pepper buttermilk dipping sauce. (Recipe follows.) For the Black Pepper Buttermilk Dipping Sauce INGREDIENTS

2 ½ 1 1 1 1 -

cups sour cream cup buttermilk teaspoon Tabasco sauce teaspoon thyme leaves, dry teaspoon granulated garlic (garlic powder) teaspoon black pepper, cracked To taste salt

METHOD

In a large mixing bowl, combine all ingredients. Mix until smooth and season to taste. CONTINUED ON PAGE 28

Sausage and Barley-Stuffed Peppers* Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York

The spinach and mushrooms in this dish boost the peppers and the nutritional profile. YIELD: Eight servings INGREDIENTS

cups low-sodium chicken broth cup water cup pearled barley teaspoons olive oil pound sweet Italian-style turkey sausage, casings removed medium yellow onion, diced garlic cloves, minced teaspoons Italian seasoning teaspoon freshly ground black pepper 8-ounce package sliced mushrooms 5-ounce package spinach leaves, roughly chopped cups marinara sauce (if using jarred, use low-sodium) ounces Parmesan, grated red bell peppers, cut in half and blanched

2 1 1 2 1 ½ 2 2 ½ 1 1 2 2 4

METHOD

Preheat the oven to 400°F. Bring the broth and water to a boil. Add the barley, cover, and reduce the heat to a simmer. Cook the barley until soft but not mushy, about 5 minutes. Set aside and keep warm. Heat the olive oil in a sauté pan over medium high heat. Add the sausage and brown. When the sausage is partially cooked, add the onion, garlic, Italian seasoning, and black pepper. Cook until the onion is soft and sausage is fully cooked, about 2 minutes. Remove from skillet and set aside and keep warm. Add the mushrooms to the pan and sweat until they release most of

their liquid. Add the spinach to the pan and cook just until wilted but still bright green. Add the mushroom mixture to the sausage mixture. Add the marinara sauce, barley, and half of the cheese. Stuff each pepper half with 1 cup of the filling. Cover the stuffing of each pepper with a square of foil coated in cooking spray. Place the pepper, foil- side down in a baking pan. Bake until the juices are bubbling, about 30 minutes. Turn peppers over and remove foil. Sprinkle remaining cheese on top and serve.

Grilled Lamb Chop with Mint-Parsley Pesto* Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York YIELD: Four servings INGREDIENTS

4 ¼ ½ ½

small bone-in lamb chops teaspoon kosher salt teaspoon freshly ground black pepper cup mint-parsley pesto (recipe follows)

METHOD

Trim the excess fat from the lamb chops. Season with the salt and pepper. Spread 6 tablespoons of the pesto among the lamb chops. Marinate in the refrigerator for at least 1 hour. Wipe any excess marinade off the lamb and grill until medium rare, about 2 minutes per side. Divide the remaining 2 tablespoons pesto evenly among the lamb chops. F o r t h e Min t-P a r s le y Pe s to INGREDIENTS Photo by Ben Fink, © 2012 by Ben Fink

1 cup mint leaves 1 cup parsley leaves 1 garlic clove 2 tablespoons fresh lemon juice ¾ cup olive oil 1¼ teaspoon kosher salt ¼ cup walnuts, lightly toasted METHOD

Puree the mint, parsley, garlic, lemon juice, olive oil, and salt in a blender or food processor until smooth. Add the walnuts and puree until well mixed.

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Cheese Blintzes with Clementines Poached in Red Wine* Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, Hyde Park, New York

These blintzes can do double duty for both dessert and brunch! YIELD: Six servings For the Whole Wheat Crepes INGREDIENTS

¾ cup plus 1 tablespoon whole wheat pastry flour 1 cup plus 1 tablespoon 1% milk 1 egg 1 teaspoon agave syrup ½ teaspoon vanilla extract teaspoon kosher salt For the Cheese Blintz Filling ½ cup nonfat cottage cheese ½ cup nonfat ricotta ½ cup light cream cheese 2 tablespoons sucralose-brown sugar blend ½ teaspoon vanilla extract ½ teaspoon orange zest ¼ teaspoon kosher salt 1 egg, lightly beaten - Ground cinnamon for dusting F o r t h e R e d W i n e -Te a P o a c h i n g L i q u i d

1 cup red wine, Gamay or Pinot Noir 2 cups brewed chai spice tea 1 cinnamon stick 2 cloves 1 star anise 3 black peppercorns 1 tablespoon sucralose-brown sugar blend sweetener 2 tablespoons sugar-free, vanilla-flavored syrup 2 tablespoons agave syrup ¼ teaspoon orange zest 4 clementines, peeled METHOD

Preheat the oven to 350°F. For the Whole Wheat Crepes Mix all the ingredients well with a whisk until no lumps remain. Heat a small, nonstick frying pan or a nonstick crepe pan over medium-high heat. Using about 3 to 4 tablespoons batter for each crepe, ladle the batter into the pan and swirl to coat the pan evenly. Cook until the edges of the crepe are lightly browned, 2 to 3 minutes. Flip the crepe over and cook until the second side is golden. Stack the crepes between parchment paper and chill until ready to fill.

For the Filling Combine all the ingredients and blend until smooth. Keep chilled until ready to fill the crepes. Fill each crepe with 3 tablespoons of the cheese filling. Fold in the edges and roll up like a burrito to form a sealed package. Bake until the center of a filled crepe reads 145°F on an instant-read thermometer, about 40 minutes. Dust finished blintzes with the cinnamon. Set aside and keep warm. For the Poaching Liquid Combine all ingredients except the clementines in a tall, narrow saucepan. Bring to a simmer. Rub the peeled whole clementines with a dry towel to remove any pith on the outside of the fruit. Add them to the poaching liquid and simmer for 10 minutes turning the fruit as needed so all of it is exposed to the poaching liquid. Remove from heat and allow to cool. Remove the clementines and slice into 3 sections horizontally. Strain the poaching liquid and bring to a boil. Reduce by at least half until it is the consistency of a syrup. Drizzle the syrup over the blintzes and serve with 2 clementine slices. *From The Diabetes-Friendly Kitchen: 125 Recipes for Creating Healthy Meals by Jennifer Stack, Registered Dietician, Associate Professor, The Culinary Institute of America, 2012, John Wiley and Sons

Legal Corner

Disability Photo: CDC

Glossary

CVC Patient Advocate Lauren Patrizio explains important Social Security disability benefit application terms. The process of applying for Social Security disability benefits can be both arduous and confusing for people who have never been exposed to it before. Just like most professional industries have their own lingo, the Social Security Administration (SSA) uses its own terms that often require explanation. My goal is to provide that explanation in this disability glossary.

Administrative Law Judge (ALJ): In most

states, if you do not agree with the reconsideration decision the Social Security Administration made on your application for benefits, you may request a hearing before an Administrative Law Judge, a legally experienced official who presides over hearings and administrative appeals of Social Security Administration decisions.

Benefit Application: You can apply for retire-

ment, disability, Medicare and spouse's benefits online (socialsecurity.gov), in person (at a Social Security office) or by telephone (800-772-1213). You will be asked to complete a benefit application, which asks detailed questions about work history, medical history, and current treatment.

Claimant: The individual making the claim for disability benefits.

Compassionate Allowance (CAL): The

Social Security Administration released an initiative in which certain extreme conditions are designated for fast-track consideration for disability benefits. This is important because an initial application for benefits generally has a hold-time of six months before a determination is made. Two examples of compassionate allowance conditions are Huntington’s chorea and use of continuous home oxygen. If you have your claim flagged for a CAL condition, you could receive a determination as soon as one month later.

Continuing Disability Review (CDR): The

Social Security Act requires that the SSA periodically update records and review the disability status of beneficiaries and recipients to ensure that you continue to be disabled and thus eligible for disability payments. These reviews (pulled randomly about every seven years) are called Continuing Disability Reviews (CDRs) and apply to those receiving both SSDI as well as SSI. These reviews can be based on either substantial medical improvement or work activity.

D Date Last Insured (DLI): First, to clarify,

DLI has nothing to do with whether you have health insurance. Instead, it is a term that the Social Security Administration (SSA) uses to determine when your eligibility for Social Security Disability Insurance (SSDI) benefits runs out. To be eligible for SSDI benefits, you must have 20 of the last 40 quarters of

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work covered. In other words, you must have a currently insured status, which generally runs out five years after you stop working and paying Social Security taxes.

Decision Letter: An official letter from the Social Security Administration explaining its decision on your disability benefits, and, if benefits are payable, spelling out the amount you will get each month.

Deemed Income: When the SSA determines

the eligibility and amount of payment for an SSI recipient, it also considers the income and resources of people responsible for the recipient’s welfare. This concept is called “deeming.” There are three main situations where income and resources are “deemed”: from an ineligible spouse to an eligible individual; from an ineligible parent(s) to a child; or, from a sponsor to an alien.

Disability Benefits: Benefits for those who

have not yet reached full retirement age, but who have physical or mental limitations that prevent them from doing substantial work for twelve months or longer.

Disability Definition: “The inability to engage

in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”

Disability Determination Services (DDS): When you file an application for Social

Security Disability benefits, your case is reviewed by your local Social Security Field Office. If you meet the nonmedical requirements (insured status for SSDI, and below income and resource limits for SSI) for either type of disability benefit, your case is then transferred to this state agency, which works closely with the Social Security Administration to review applications for disability benefits. DDS is the entity that makes the medical determination on your claim.

Expedited Reinstatement of Benefits (EXR): If you had your disability benefits

terminated due to work earnings, and then subsequently had to reduce your work below Substantial Gainful Activity (see SGA) or end employment as a result of your impairment, you can get benefits reinstated through this quicker and easier process. EXR is only available if applied for within five years of the initial termination of benefits. While a formal determination is pending, you may be eligible for provisional benefits (that will never be considered an overpayment) for up to six months.

Federal Benefit Rate (FBR): Supplemental

Security Income (SSI) is a “need-based” program funded by general tax revenue designed to provide a minimal level of income to those disabled persons in financial need. It is intended to supplement any income individuals already possess, thus the dollar amount received every month can vary substantially for each person. However, the Federal Benefit Rate is the maximum dollar amount that an individual or family can receive in SSI cash benefits from the federal government. States have the option to then supplement the FBR for SSI recipients.

Impairment-Related Work Expense (IRWE):

The cost of certain impairment-related items and services required by individuals in order to work are deducted from gross earnings in calculating SGA. The cost of IRWE expenses can be deducted from gross earnings during the initial application process, enabling individuals to meet the SGA requirement. In order for the expense to be deductible it must be related to the work activity and paid for by the recipient.

Listing of Impairments: An official compi-

lation, by the Social Security Administration, of impairments considered severe enough to prevent an individual from doing any substantial gainful activity. These impairments, which can be found at www.ssa.gov, are listed by each major body system.

M Medicare: The government health insur-

ance program for individuals 65 and older, as well as some others, including those receiving Social Security disability benefits for two years or more.

Since Supplemental Security Income (SSI) benefits are needs based, the Social Security Administration must annually update a recipient’s income, resources, and living arrangement information to insure continued financial eligibility for SSI benefits. These are non-medical reviews.

Re-determination Review:

Representative Payee: It is the policy of

the SSA that every legally competent beneficiary or recipient has the right to manage his or her own cash benefits. However, when there is evidence that an individual is not able to manage or direct the management of benefit payments in their best interests, representative payment may be made. Benefits are then paid to a third party for the use and benefit of the beneficiary.

Request for Reconsideration: In most

states, this is the first step in challenging an adverse decision on an initial application for benefits. It is generally a paper review of the claim by an examiner at DDS.

Residual Functional Capacity (RFC): This

is an individual’s remaining ability to function in the workplace despite limitations from disabling conditions. An RFC is assessed based on medical and other evidence and the physical, mental, and sensory requirements of work.

Social Security Administration (SSA):

A United States government agency that administers social insurance programs, including Social Security, Supplemental Security Income and enrollment in Medicare. Previously operating under the Department of Health and Human Services, the SSA has operated as an independent agency since 1994. The headquarters are in Baltimore, and local field offices are in all 50 states and U.S. territories.

statutorily blind individuals. If you are considered to be engaged in SGA or you make above the $1,070 or $1,800 limit, you will be considered technically ineligible for disability benefits.

Treating Physician and Treating Physician Data Sheet (TSDS): A specialized physician

or psychologist who treats your for your disabling condition and the form he/she completes regarding your ability to work. The TSDS is arguably the most compelling evidence you can submit to support your claim for benefits.

Trial Work Period (TWP): The Social

Security Administration encourages an individual to work, if possible. Accordingly, individuals receiving Social Security based on disability are entitled to a nine-month TWP, which provides opportunities to test work skills while maintaining full benefit checks. During the TWP, the restriction on substantial gainful activity is not enforced.

Unsuccessful Work Attempt (UWA): If you

attempt, but cannot sustain substantial gainful activity (SGA) for more than six months, it will be considered an unsuccessful work attempt, as long as the termination or reduction of hours is due to your impairment or the removal of special conditions. In other words, that period of work over the SGA limit will not be detrimental to your application.

Vocational Expert (VE): Most ALJ’s request

the presence of a VE at a hearing. A VE is a government-paid occupational expert who can testify to the type of skill and exertion required to perform your previous job or any other jobs in the national or regional economy to determine if any work is available to you.

Substantial Gainful Activity (SGA): People

are often surprised to hear that they can continue working and apply for and/or receive disability benefits. However, there is a maximum amount that you can make. SGA is defined as the performance of significant physical or mental duties for pay on a sustained basis. In 2014, the SGA limit is $1,070, gross, a month for an individual with a disability other than blindness and $1,800 for

Photo: C. Highsmith. Library of Congress. Browing Court of Appeals, San Francisco

In Your Words

C lub Fight

Sandra Rock describes her struggles with idiopathic pulmonary fibrosis and her fight to promote awareness of and funding for the disease.

HAD SURGERY AND I HAD been on IV antibiotics for 15 months. Once I got off the antibiotics, within a couple of weeks, I started getting short of breath, and it just got worse and worse. By the time I finally got to see a doctor, I couldn’t walk across the room without being short of breath. I saw my primary care doctor and she took an X-ray and said, “You need to see a pulmonologist,” so she connected me with one here in Sacramento. I had a CT scan done, and at that point I had lost 50 percent capacity in both my lungs from the inflammation. Back then, in 2001, when I was diagnosed, idiopathic pulmonary fibrosis (IPF) had just been recently classified as its own disease, so there wasn’t a lot out there about what to do. As I tried to find out more about IPF, I got in touch with the Coalition for Pulmonary Fibrosis and I started a support group for patients and caregivers. I went to pulmonary rehab, which is a lifesaver, because you never think about how hard it is to bend over and get the clothes out of the dryer, or bend over and empty the dishwasher, or even to just get out of a car. It’s so taxing when you don’t have the breath to do it, so pulmonary rehab really, really helped. In rehab, I met a nurse who also had IPF, and she and I started the support group together. I had a clerical background, being a secretary, and she had a nursing background and couldn’t type, so together we made a good team. Unfortunately, she

passed away two months after we started the group. Her disease progressed rapidly. I continued the group until two years ago, when my health wouldn’t allow me to take care of it anymore. It’s been very, very hard. Over that 10-year period, I would estimate that I lost 102 friends who were support group members, watching them get sicker and sicker, and even speaking at some of their funerals, and being with them on their last days. At our first meeting, we had five people, and all five of the original members are gone. But, when I turned the group over, there were more than 60 people in it. I know it helped people, because the families would tell me so; they would write me letters and thank you notes. I know it’s been a big help to everybody as far as learning about living with pulmonary fibrosis. Now you can go anywhere and learn about it, but back then, there was nothing on the web. You get the prognosis and it says three to five years, and you think ‘Oh my God.’ I was just a little over 50 at the time. One of my daughters was in college, and one was engaged, and I’m thinking, ‘My God, I’m not going to be here to see her graduate, or ‘I’m not going to be here to see her get married.’ It’s devastating. I made a bucket list of things I wanted to do before I died. That’s the way I looked at it.

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

I got a second opinion at UCSF, and they said that I didn’t have IPF, that I had hypersensitivity pneumonitis, and it changed my prognosis from three to five years to seven to 10 years. Then, I had a lung biopsy and we sent it to Mayo, and they said that it was definitely IPF. There’s no FDA-approved treatment. There’s no cure, except a transplant. You have to meet certain criteria for the transplant, and, unfortunately, I don’t meet the criteria, due to other underlying diseases, so I’m just waiting. Because that’s all you can do, once you realize that you’re not a transplant candidate. So you just make the most out of every day and pray that you don’t have an exacerbation. I did very well for many years, and then I had an exacerbation. I was on a plateau for many years. And something happens — they don’t know what causes it— but suddenly, there’s a decline. And so I had to start using oxygen at night. As the years have gone by, I’m still using oxygen at night and for any kind of exertion. I have about 40 percent lung capacity now. I can pretty much function on a daily basis, with no problems, but when I go out and about, I do have to use my oxygen.

Above: Sandra Rock with her husband, Jim, daughters, Rachelle and Julia, son-in-law Ernie and granddaughters Olivia and Iris

I’ve had the opportunity to work with CVC and the Coalition for Pulmonary Fibrosis over the years. My husband and I were both privileged to go with them to Washington, D.C., to speak to the congressional community. Every year, we would go back and do what we could, to just try to get somebody to recognize us and understand that there needed to be more research and funding appropriations for IPF. Fortunately, the coalition met Representative Charles Norwood, and he was nice enough to take us in, and we managed to actually get a bill passed recognizing IPF as a terminal disease and the need for more funding. We were actually sitting in the gallery of the House of Representatives when the bill was passed. The tears were flowing like crazy, and there was another girl who had IPF at the time, who was sitting next to me. Finally, we accomplished something for IPF. In the U.S., there are up to 200,000 people with idiopathic pulmonary fibrosis and 48,000 new cases every year. We lose 40,000 patients a year, which is the same as breast cancer, but not enough peo-

ple know about us, about the disease. We don’t have a spokesperson at this point. Some celebrities have come out to speak, but others, who have passed from fibrosis, haven’t, which would have been a big help, because they were pretty well known people. IPF causes scarring of the lungs, and that part of the lung will not transport oxygen. [Symptoms can include] shortness of breath, and some people have a dry cough. They cough into spasms almost. It’s very fatiguing, of course, when you can’t breathe, and on bad days, are very weak. Some people have weight loss and also clubbing, which is rounding of the fingertips and the toes, as the disease progresses. I think what’s important for the newly diagnosed to know is, not to give up, to do the pulmonary rehab, and not to let vanity stand in your way of using oxygen. Be an advocate for yourself, as far as your doctor is concerned. If you don’t like what he’s saying, find somebody else. Get a second opinion. Finding a support group is very, very important. As much as your family loves you and cares for you, they don’t have any idea, really, what you’re going through,

and only people who are going through the same thing know. That’s the first thing I always hear when a new person comes in, that it’s so nice to be around people who understand what you’re going through. The big thing is to be your own advocate and not just accept. If your doctor says that you’re not qualified for a transplant, don’t accept that. We had a guy in our group who was 70 who had a transplant. Most people who get this disease are over 50 years of age. Just don’t stop if you don’t like the answers. Some people, when they hear “three to five years, no cure, no treatment,” they just give up. Or they’re embarrassed to carry the oxygen around with them, so they sit home. They don’t travel. They don’t do anything anymore. That’s so very hard to see and to understand. There’s definitely research going on, and the good news is that two drugs were recently approved by the FDA. They’re supposed to help with the progression of the disease. There’s hope. At least it’s a treatment, not a cure. I was born right here in Sacramento — born and bred in California. I have one brother and one sister. I’m married to a wonderful man, Jim. Without his care and love and support, I know I wouldn’t be here today, because of all the sicknesses that I’ve had. We have two beautiful daughters, Rachelle and Julia. Julia lives here in Sacramento, and Rachelle lives in Arizona with her family. We have a wonderful sonin-law, Ernie, who helps out whenever he’s around, and two adorable grand daughters, Olivia and Iris. I love to go antiquing. I love to go to festivals and concerts. A park nearby has dancing on Sunday nights during the summer, so I just take my oxygen with me. Normally, I get through about threequarters of a dance, and then I have to go back and get some oxygen. Last year I did have smaller tanks, and I used to put them in a backpack and strap them on my back and be able to dance for a longer period of time. That’s been special to me—to able to dance with my husband again. We like to waltz and swing dance. But, unfortunately, in 2009, I had a reaction to a medication that left me paralyzed on both sides of my body. Through rehab, I have regained about 75 percent, but my right side doesn’t function as well. It’s kind of hard to

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swing dance when your leg doesn’t move around as well as it used to. I walk with a cane now, and when I’m out and about. I love to shop, so I use my Rollator walker, and I just put my oxygen and my purse on there, and off I go. I go to the state fair every year. I use a scooter and spend about four or five hours there. Really, I just love walking around. I go to art festivals. I go to home shows. Just give me something to go to, and I’m there walking around.

in St. Thomas and swim around for a while. We had an absolutely wonderful time, so we now want to try another one. It’s very important to go out and be around other people. It’s so important to stay active, to try to exercise several times a week, even if it’s walking two doors down and two doors back. That keeps the lungs functioning, and the more you sit, and the more you don’t move, the weaker you get. Not to mention how much better you feel when you get out and about.

your life, try to get some exercise, and try to get good rest, and just not overdo it. And that’s what’s hardest for me. Some physicians don’t know much about this disease, and they just say, “Three to five years to live, and there are no treatments.” And so you’re thinking, ‘Oh my gosh.’ Or they’ll hand them a flyer from the support group, and say, “Here. Go see these people. They’ll help you.” It’s very sad that the physicians don’t know enough about this disease and what’s

Above: (Left to right) Jim and Sandra Rock. Sandra Rock with granddaughters, Iris and Olivia, and husband, Jim. Jim and Sandra Rock.

It’s very important to go out and be around other people. It’s so important to stay active, to try to exercise several times a week, even if it’s walking two doors down and two doors back. I love plays. We go to the theater several times a year to see musicals and any kind of drama. Jim is my guardian angel and caregiver. He waits on me. He cooks, cleans, does laundry, does the dishes, grocery shops and tries to provide me with “maximum happiness” every day. Some days, you just wake up and hurt all over without doing anything. But I try to do the best I can. I’ve still got to do a hot air balloon ride, parasailing, and snorkeling. I love Disneyland. I love the Tower of Terror. That’s one of my favorite rides at the California Adventure, which everyone says I’m absolutely crazy doing. We’re going to Disneyland at the end of October for my granddaughter’s third birthday. So I just get my scooter, and off we go. I don’t have to use my oxygen as much when I’m on the scooter. We went on a cruise to the Eastern Caribbean this year that we’d been planning for six years, and we’re planning another one next year. I got to go in the beautiful water 34

I’m good for about two days in the house, and then I‘ve got to go somewhere. I don’t care if it’s to Target to go up and down the aisles. Of course, sometimes you get the stares and the little children saying, “Mommy, what’s that on her nose?” Then I just simply tell them, “Because I can’t breathe, so this gives me air.” I would rather be out and active. I just feel so good after I’ve done it. If you go to a pulmonary rehab program, they have after-programs where you can go back and see the people again, and talk with them and laugh. It’s so vital to stay active as much as you can. We have a couple of people in our group who are in wheelchairs. I think, for new people, it’s very hard, when they come into the meeting, and they see people with oxygen and walkers and wheelchairs. And you think, ‘At any point that could be me.’ Because there’s no way of telling how this disease is going to progress. It’s different for everybody. The best thing to do is to eat well, enjoy

caringvoice.org • Winter 2014 • The Traveling for Treatment Issue

going on with treatments and drugs, and that causes a lot of problems. It’s important to keep up with your yearly HRCTs — just because your sixminute walk or your pulmonary function test doesn’t show any change, doesn’t mean there haven’t been changes. Keep up on your doctors’ appointments. Make a list of questions before you go in to see your doctor. I take a small tape recorder in with me, so that I don’t have to take notes, and I don’t have to worry about remembering what the doctor said. You tape it, then you can listen to it again before your next appointment, so you know where to pick with your discussion and any tests you should have had. Don’t give up. The IPF stands for “I’m prepared to fight.” We’ve had four people in our group who’ve had lung transplants and been successful. Join a support group, exercise and stay active. Do what you can, and enjoy your life. Enjoy your life, and wait and hope that something comes along.

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TO SHARING YOUR EXPERIENCE Living PAH is a free resource offering information and tools to help you take a more active role in your care. It is a community where individuals, groups and programs unite in the idea that far more is possible when we work together.

Visit LivingPAH.com, which features a tips section that collects the experiences of patients, caregivers and family members dealing with PAH. You can learn from others or share some advice of your own. Your experience may be just what someone else needs to hear.

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Caring Voice Coalition 8249 Meadowbridge Rd Mechanicsville, VA 23116

Caring Voice Coalition, Inc. (CVC) is a national 501(c)(3) non-profit, charitable organization that improves the lives of patients with chronic illnesses. We do this by offering financial, emotional, and educational support.

How We He lp CVC’s programs are a direct response to patient needs. In addition to medical and financial challenges, chronically ill patients face significant obstacles to starting and remaining on therapy. Our programs remove those obstacles.

The Diseases We Suppor t • • • • • • •

Alpha-1 Antitrypsin Deficiency Chronic Granulomatous Disease Complex Partial Seizures Cutaneous Lymphoma Factor XIII Deficiency Gaucher’s Disease Huntington’s Disease

• • • • • • •

Idiopathic Pulmonary Fibrosis Infantile Spasms Inflammatory Eye Disease Lennox-Gastaut Syndrome Myositis Narcolepsy Nephrotic Syndrome

• • • • • •

Orthostatic Hypotension Pulmonary Hypertension Sarcoidosis Severe Chronic Pain Steven-Johnson Syndrome Thalassemia Syndromes

Our Programs • Financial Assistance • Alternate Coverage • Therapy Appeals • Social Security Disability • Patient Education

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1-888-267-1440 CVCInfo @ caringvoice.org

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