Category Archives: Media Center

← Previous post

So, what is sarcoidosis?

Posted on April 3, 2015 by Charlie

April is National Sarcoidosis Awareness Month. Sarcoidosis is a multi-system inflammatory disorder that affects people of any race, gender, and age worldwide. Symptoms can mimic other diseases, vary in the degree of severity, and change over time, therefore a proper diagnosis and a lifetime of quality care are needed. 

Sources mentioned in this graphic can be found at:
https://www.stopsarcoidosis.org/
http://www.mayoclinic.org/diseases-conditions/sarcoidosis/basics/definition/con-20022569
http://www.rightdiagnosis.com/s/sarcoidosis/stats.htm 

Posted in Diseases, Featured, Media Center | Leave a comment

CVC one of best nonprofits to work for 4th year in a row

Posted on April 1, 2015 by CVCeditor

Several months ago Caring Voice Coalition (CVC) participated in a survey rating the best nonprofits to work for. It is with pride and gratitude that we announce that CVC has ranked in the top 50 for the fourth year in a row.

This year CVC rose to #9 out of 50 overall organizations and #7 in the Small Organization category. Click here to see the results of the 2015 survey by The NonProfit Times.

 

 

Posted in Diseases, Featured, Media Center | Leave a comment

Traveling for Treatment

Posted on March 16, 2015 by Charlie

When patients with rare, life-threatening, and chronic illnesses, and their families, must travel long distances for medical treatment, concerns about the costs of travel, lodging, and food can amplify their already significant stress.

Fortunately, a network of nonprofit hospital houses, respite houses, and transportation providers exists to ease the financial and emotional burdens of many patients and families in need, at little or no cost. In this article, we profile three such hospital house programs and a respite house program and include contact information for programs found at some of the major medical centers in the U.S., as well as for nonprofit medical transportation providers.

“I’ve talked to parents who’ve had to quit their jobs, because it’s a full-time job to deal with their children’s illnesses. It’s a real hardship, financially and emotionally,” says Dorie Hightower, media relations manager for The Children’s Inn at the National Institutes of Health (NIH) in Bethesda, Maryland.

“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.”

Primarily sustained by donations, The Children’s Inn at NIH is a nonprofit, free inn for pediatric patients involved in clinical trials at NIH and their families. Since it opened in 1990, more than 12,500 seriously ill children and their families have stayed at the Inn, which can accommodate up to 65 families a night, at no cost to them. (A similar facility, The Edmund J. Safra Family Lodge at NIH, provides lodging at no cost to the families, caregivers and loved ones of adult patients taking part in clinical trials on the NIH campus.)

“What makes us unique is that all of the kids that are staying with us are participating in medical research at NIH,” says Jennie Lucca, chief program and services officer for The Children’s Inn at NIH. “And what that means is that they’re hoping for a cure or a treatment for themselves, while also advancing medical discoveries for everybody.

“The NIH treats the most rare and difficult diseases, and so they participate in protocols for a wide variety of heart, lung and blood disorders, rare genetic diseases, mental health disorders, and cancer,” explains Lucca.

“For example, a child can be diagnosed with leukemia, and leukemia has largely become an illness that’s very treatable, but the children that come to NIH would have a difficult to treat type of leukemia, where they’re really participating in research for a hope for a cure. And there is also a large undiagnosed diseases program at the NIH—a lot of our kids are coming with symptoms, but they don’t have a name for their disease yet.”

Since its Clinical Center opened in 1953, NIH has held thousands of clinical research trials for rare and chronic diseases, including chronic granulomatous disease, pulmonary hypertension, thalassemia, idiopathic pulmonary fibrosis, cutaneous lymphoma, childhood epilepsies, Huntington’s disease, sarcoidosis, myositis, and Gaucher’s disease.

“Parents typically find out [about The Children’s Inn at NIH] through their doctors,” says Hightower. “But I hear quite a few stories about parents who have done 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 Children’s Inn has really empowered pediatric clinical research, because in the past, when people had to stay at hotels in the area, they weren’t able to retain these families in clinical trials, because it was expensive and inconvenient.

“There is no typical length of stay. Some people just stay a couple of days; others can stay for months. We’re right across the road from the NIH Clinical Center. You could send a child back here to sleep, where you wouldn’t have felt comfortable sending them to an area hotel with an IV. They’re able to stay here with their families, whereas otherwise they would have had to stay in the hospital.

“Nobody here wears white coats. It’s a very homelike environment. It’s a place to come 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 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 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 for The Children’s Inn at NIH and The Edmund J. Safra Family Lodge at NIH contact information.

“Nora’s Home is only for transplant 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, lung-transplant patients stay the longest. “It is very unique. They require a longer stay and a very strict protocol. They seem to be more 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 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.

“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, Lehmann saw the need for a facility like Nora’s Home up close. “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.

“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-lung-transplant patients. That would be another layer of protection for them.

“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 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 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 contact information for Nora’s Home for Transplant Patients and Their Families.

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 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 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 a bright waterfront beach house to a 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.

“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 for contact information for The Believe In Tomorrow Children’s Foundation.

 

Posted in Diseases, Featured, Media Center | 2 Comments

Winter Feast Part 4

Posted on February 27, 2015 by Charlie

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

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.

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

• 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.

• 6 cups kale leaves, stems removed and packed
• ½ cup blue cheese dressing (recipe follows)
• ½ teaspoon sea salt

• 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.

• 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)

• 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.

Want to see more recipes like this? Subscribe to Community Magazine today!

Posted in Diseases, Featured, Media Center | Leave a comment

Newsmaker Q&A: Nicholas Smedira

Posted on February 13, 2015 by Charlie

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.

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.

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 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 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, multi-specialty 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)

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.

Posted in Diseases, Featured, Media Center | Leave a comment

Fight Club: Sandra Rock’s Struggle with IPF

Posted on February 12, 2015 by Charlie

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

I 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.

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.

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 people 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 son-in-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 three-quarters 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
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.

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 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.

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 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 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 six-minute 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.

 

Posted in Diseases, Featured, Media Center | 1 Comment

Winter Feast Part 3

Posted on February 9, 2015 by Charlie

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

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.

• 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
• ⅛ teaspoon kosher salt

• 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

• 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.

• 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.

• 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.

• 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.

Want to see more recipes like this? Subscribe to Community Magazine today!

Posted in Diseases, Featured, Media Center | Leave a comment

CVC Close Up: Nicole Reynolds

Posted on February 2, 2015 by Charlie

 

 

Six 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.

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.

Posted in Diseases, Featured, Media Center | 3 Comments

Disability Glossary

Posted on January 27, 2015 by Charlie

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.

Click on a term to reveal it’s definition.

Administrative Law Judge (ALJ):

Benefit Application:

Claimant:

Compassionate Allowance (CAL):

Continuing Disability Review (CDR):

Date Last Insured (DLI):

Decision Letter:

Deemed Income:

Disability Benefits:

Disability Definition:

Disability Determination Services (DDS):

Expedited Reinstatement of Benefits (EXR):

Federal Benefit Rate (FBR):

Impairment-Related Work Expense (IRWE):

Listing of Impairments:

Medicare:

Re-determination Review:

Representative Payee:

Request for Reconsideration:

Residual Functional Capacity (RFC):

Social Security Administration (SSA):

Substantial Gainful Activity (SGA):

Treating Physician and Treating Physician Data Sheet (TSDS):

Trial Work Period (TWP):

Unsuccessful Work Attempt (UWA):

Vocational Expert (VE):

 

Posted in Diseases, Featured, Media Center | Leave a comment

Patient Association Profile

Posted on January 19, 2015 by Charlie

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.

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 Pulmonary Fibrosis 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 yourself, so that you then have the strength to help others. The same can be said for those helping loved ones with PF.

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.

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 medical team. I’m also always working to improve and expand our programming to better serve the PF community.

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.

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 [email protected]. 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.

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 user-friendly 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 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.

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.

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.

 

Posted in Diseases, Featured, Media Center | 2 Comments

Winter Feast Part 2

Posted on January 15, 2015 by Charlie

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

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.

• 2 cups low-sodium chicken broth
• 1 cup water
• 1 cup pearled barley
• 2 teaspoons olive oil
• 1 pound sweet Italian-style turkey sausage, casings removed
• ½ medium yellow onion, diced
• 2 garlic cloves, minced
• 2 teaspoons Italian seasoning
• ½ teaspoon freshly ground black pepper
• 1 8-ounce package sliced mushrooms
• 1 5-ounce package spinach leaves, roughly chopped
• 2 cups marinara sauce (if using jarred, use low-sodium)
• 2 ounces Parmesan, grated
• 4 red bell peppers, cut in half and blanched

• 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.

Want to see more recipes like this? Subscribe to Community Magazine today!

Posted in Diseases, Featured, Media Center | Leave a comment

Back to Life

Posted on January 5, 2015 by Charlie

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.

I 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.

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.

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.

Posted in Diseases, Featured, Media Center | Leave a comment

Winter Feast Part 1

Posted on December 29, 2014 by Charlie

Warm up this winter with these flavorful, nutritious dishes, from bite-sized snacks to hearty meals, served with holiday health in mind! (From the Winter 2014 issue of Community Magazine)

Steve 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.

• 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]

• 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 cup goat cheese
• ½ cup water
• - To taste salt
• - To taste pepper

• Mix the goat cheese with the water to thin out the consistency until it is spreadable. Season with salt and pepper.

• 2 stalks celery, peeled and sliced into bite-sized 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

• Combine the water, vinegar, sugar, salt, mustard seeds, ginger and jalapeno in a small pot and bring to a simmer. Pour over sliced celery and allow to sit for 24 hours.

• 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

• Combine all of the ingredients and blend until smooth. Season with salt and pepper.

• 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.

Want to see more recipes like this? Subscribe to Community Magazine today!

Posted in Diseases, Featured, Media Center | Leave a comment

Back to Work – Legal Corner

Posted on December 8, 2014 by Charlie

CVC explores federal programs that help those with disabilities find employment.

On May 27, 2014, the Department of Labor, through Secretary of Labor Thomas E. Perez, announced an additional $15 million in grants to state agencies to develop strategies for increasing participation of people with disabilities in the workforce through the Disability Employment Initiative (DEI). This article will discuss the DEI, along with other workforce programs available to individuals with disabilities.

The Disability Employment Initiative (DEI) is a federal program created to improve education, training, and employment opportunities for individuals who are unemployed, underemployed, or receiving Social Security disability benefits. The DEI has three components: cooperative agreements, technical assistance to grantees, and evaluation of the grantees’ activities to measure outcomes.

The Department of Labor’s Employment and Training Administration and Office of Disability Employment Policy jointly run the DEI, which focuses on developing programs at the state and local levels by awarding grants to state and local entities. To be eligible for a grant, the state or local entity must participate in the Social Security Administration’s Ticket to Work Program (see below).

Since 2010, the Department of Labor has awarded over $81 million in grants to 26 states through the DEI. Other successes include:

• Increased collaboration among a variety of partners to assist individuals with disabilities in finding employment
• Increased accessibility to American Job Centers, which provide free help to job seekers
• Training for staff of American Job Centers

The DEI releases grants through “rounds.” During its next round of funding, the DEI intends to award at least one grant to at least one project focusing on:

• Adults with disabilities, ages 18 or older;
• Youth with disabilities, ages 14-24; and
• Individuals with significant disabilities, ages 14 or older.

For more information about the DEI, see http://dei-ideas.org.

The Workforce Recruitment Program (WRP) is a federal recruitment and referral program connecting college students and recent graduates with disabilities to the workplace. The program assists students from all majors and levels, from college freshman to graduate and law students. Since its inception, over 6,000 students and recent graduates have received either temporary or permanent employment positions through the WRP.

Here’s how it works: during the fall of each year, a WRP recruiter holds an on-campus-interview with potential candidates to assess the candidate’s eligibility. Eligibility criteria include:

• Current, full-time undergraduate or graduate student or
• Graduated within one year of the release of the database each December; and
• Have a disability; and
• Be a U.S. citizen.

If eligible, the WRP assists the student:

• Market her abilities
• Hone her interviewing skills
• Gain on-the-job knowledge, skills, and abilities

If you are a student or recent graduate and interested in signing up for the WRP, contact your WRP campus coordinator during the preceding spring semester. Your campus coordinator will have specific instructions on how to proceed. During the fall, either October or November, you will have a phone interview with a WRP representative. The WRP representative then compiles the information and enters it into a database that federal hiring officials may search.

Private sector employers or students interested in private sector employment can benefit from the WRP by accessing www.askEARN.org.

For more information and helpful resources visit www.dol.gov/odep/wrp/Students.htm

Section 14(c) of the Fair Labor Standards Act allows employers, upon authorization from the Department of Labor, to pay less-than-minimum wages to workers who have disabilities. The justification is that the person’s earning capacity or productivity is impaired by a disability, such as blindness or cognitive impairment. Many advocacy groups argue that this law, which first appeared in the 1938, is antiquated and discriminatory.

On February 12, 2014, President Obama signed an executive order that carves out an exception to Section 14(c) for federal contractors. The order essentially requires federal contractors, including workers with disabilities, be paid at least $10.10 per hour.

This new wage will apply to new contracts and for replacements for contracts with an expiration date of January 1, 2015.

The Ticket to Work Program, administered through the Social Security Administration, allows Social Security Disability Insurance or Supplemental Security Income recipients to test whether they are able to return to work without losing their benefits.

The program works by enlisting providers, called Employment Networks (ENs), to offer employment services such as career counseling, vocational rehabilitation, and job placement or training to the enrollee. The EN’s services are free of charge. If you enroll, you will be connected to an EN in your locality, which will assist you with developing an Individual Work Plan (IWP). This plan will help you identify your goals and employment needs. From there, the EN will assist with career counseling, job placement, and ongoing support.

While enrolled in the Ticket to Work Program, your return to work will not trigger a medical review of your claim. Further, your benefits will not stop for a time, depending on how much you are earning.

A similar program specific to Supplemental Security Income recipients, is PASS, or “Plan to Achieve Self-Support.” PASS allows a beneficiary to set aside money for expenses needed to start a business, go back to school, buy equipment and tools, or transportation and uniforms, or any other type of training, items or services needed to reach a work goal.

To set up a PASS, the first step is to decide on a work goal and the items or services necessary to achieve that goal. You can get help with creating a goal by contacting a PASS expert, Employment Networks involved with the Ticket to Work Program (see above), or a local Social Security office. You will then complete a PASS enrollment form (SSA-545), which you will submit to your local Social Security office. The local office will send the PASS form to an SSA employee, who will review your plan to see if the goal is practical, and the listed items are priced reasonably. If changes are needed, the PASS expert will work with you directly. For more information, see www.socialsecurity.gov/disabilityresearch/wi/pass.htm

This article surveyed only a few of the many programs that allow individuals with disabilities to flourish in the workplace. These programs build upon and strengthen each other, such as the DEI bolstering the Ticket to Work Program by requiring all participating agencies to become Employment Networks. With continued participation, collaboration, and investment, these programs will continue to expand the pool of qualified job seekers for the mutual benefit of the employer and employee.

Posted in Diseases, Featured, Media Center | Leave a comment

Defining the New Normal

Posted on December 7, 2014 by Charlie

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.

Do 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 devastated. 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.

Posted in Diseases, Featured, Media Center | Leave a comment ← Previous post