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In Your Words: Brothers in Arms, Part 1

Posted on by Charlie

Twin brothers Javier and Omar Estevez have been living with sarcoidosis for more than a decade. Within the past four years, they’ve also been diagnosed with pulmonary hypertension. They find strength and support in one another, and urge others with chronic illnesses to keep fighting with hope.

Javier Estevez


I’m a retired New York City police officer. The sarcoidosis came from inhaling the debris from the 9/11 attacks. I was there about two days after the twin towers fell. At first I did perimeter security around the buildings, then they had me doing search-and-rescue. Eventually we began to tackle digging through the rubble for remains. I worked there about four to five months.

One day a sergeant asked me to get masks for the entire team of 10-12 guys but the Occupational Safety and Health Administration (OSHA) group had run out of them. In the meantime they wanted us to use a handkerchief or our sleeve to cover our noses and mouths while we were working. They got new masks after a while but they were paper-thin and only good for short periods because the air penetrated through and then you were right back to having the dust inside your nose and mouth and down your throat.

My first symptom was shortness of breath. I have two daughters, who were young at that time, and one day they were asking me to chase them. We were playing tag and as I tried to catch one of them I fell. I couldn’t breathe. I reported the next day to work and saw the police department’s doctor. I told her how I was feeling and she sent me to a pulmonologist.

“Our illnesses are very misunderstood. They mimic a lot of different things so it’s important that a proper diagnosis is made.”

I saw that pulmonologist for six years. He would prescribe medicine and tell me there’s a real problem, but he would never tell me the problem. Finally, I went to a different pulmonologist. I told him my conditions and how I was feeling and he did about 2 ½ hours-worth of work during that first visit. He said I wouldn’t be able to return to work because I was so sick.

In 2007 my current pulmonologist told me I would need a lung transplant. He said not right away, but in due time. I’m still trying to get on the waiting list. I’ve started the process but there are a battery of tests and insurance regulations that I’m still working through.

In 2011 I was diagnosed with pulmonary hypertension. I’m not able to do much of what I used to do — I can’t walk without an oxygen tank, and even with the oxygen tank it’s limited. I just did a six-minute walk test and I failed that miserably. I was only able to walk two minutes at a slow pace. I have the hobby of metal detecting, walking around the beach to give myself some exercise, and I can’t do that anymore. Traveling now, vacation-wise with my family, is also difficult. My daughters are still young, they’re 14 and 15 and they want to participate in things like zip lines and go on rides, but I can’t do that. And, when we take long flights I’ve got to think about the oxygen tanks that I must bring on board.

It’s tough, but I have my family’s support. They help me cope. I’m able to attend church and I do research on the computer; I enjoy reading articles. Most of all, I enjoy spending time with my family.

You have to stay strong, positive, and not give up. If and when you get diagnosed, look for a second opinion. Most importantly, don’t give up on your life. Just because you were diagnosed with an illness doesn’t mean you should get depressed and lay about. It means you need to remain strong, remain active, and pursue whatever you want to do with your life. Don’t think that it’s over because there is medication that could very well help.

To have my twin brother, who has the same conditions, understand what we’re going through and understand the pain, is awesome. Our illnesses are very misunderstood. They mimic a lot of different things so it’s important that a proper diagnosis is made. The sooner you get checked out and diagnosed the better the prognosis later down the line.

It’s very important to share your story with others because people like myself, who are closed off, need to know that there are individuals with similar conditions who understand.

Most importantly, don’t dwell on the illness. Enjoy your life to the fullest extent because tomorrow is not a guarantee. I give that advice to enjoy life because I was told once I only had a limited amount of time, maybe at most three years, and those three years have already gone by.

By remaining positive you will see a change in yourself.

Click here to read part 2, Omar’s Story.

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Defining The New Normal: The Power of Your Words

Posted on by CVCwade

This column is the second 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”.

Colleen Brunetti

Colleen Brunetti

Many years ago, perhaps before I was really even comfortable with sharing my story of life with Pulmonary Hypertension (PH), I found myself being pushed out of my comfort zone and encouraged to do just that – talk about my journey with PH.

At first, I was quite taken aback. Any talk about my journey was centered on sharing my alarm at the diagnosis, expressing my confusion over medications, and grappling with a fear of the future. I was looking for answers, not offering them. Why was I being asked to share my story? However, as time progressed, and I started to learn how to live with PH, I began to also learn that sharing my story had great power.

I learned this by first seeing the power that other people’s stories had on me. I looked around and saw someone who used to be limited by his or her disease and now was doing better – could I feel better too? And then there was someone who learned to cope with a limitation I struggled with – could I be coping better too? And perhaps most mind-blowing to me, there was someone who had not only regained mobility but was actually exercising – could I start exercising again too? The answer to all of these questions was eventually, “Yes”. And as that became clearer, something began to shift.

I have come to realize there are actually three distinct groups of people you are reaching when you are sharing your own story, and each has a reciprocal benefit. These three audiences create a cycle that repeats itself as you make progress, face new challenges, and help those along. You may also find yourself moving between one group and the next yourself as you listen to others tell their story.

Steps Through a Support Cycle: The People You Impact

Those who are a step behind you:
You are living with a critical illness, or caring for someone who is. Chances are, you’ve learned a thing or two about coping and moving forward. When you share your story, those who are a step behind where you are now can look to you for guidance and inspiration. If you have to be put in this crazy hard world of critical illness, what a blessing it is to turn that around and use it for good, and for helping others. Do it whenever you can.

Those who are stepping beside you:
These are the people who are living stories with strong parallels to yours. They are the ones who “get it”. In a broad sense, this may be anyone sharing life with the same disease you are. However, there are always subgroups in these categories too, such as those who are in the same stage of life as you are, or those who are on the exact same medication, etc. It is these people who you can look to and say, “Me too! Let’s do this together.” There is something immensely comforting about that.

Those who are a step ahead of you:
These are the veterans, the movers and shakers, the “been there, done that, got the T-shirt” crowd. They’re the ones who have blazed the trail on new medications, found ways to cope with limitations, or blasted through walls you are stuck trying to figure out how to get around. These are the folks who, when you tell your story, look back and lend you a hand up. When you rely on those who are a step ahead of you, you not only benefit from their wisdom, but you help them solidify their own strength. Pretty cool, right?

Your story helps someoneCrafting Your Words

No matter where you are in your own journey with a major diagnosis, someone needs to hear from you. What counts is that you are sharing your story, and listening keenly to others tell theirs, so that there is always an exchange of information, support, and inspiration.

While it’s pretty clear that sharing your story can have immense impact, sometimes it can be challenging to find the right platform. Start small, with support groups of people you trust, for example. Attend meetings, get to know one another, and watch as the cycle of sharing and supporting turns.

Social media is also a great place to start. Not only is it available 24/7, it is also accessible when getting out and about isn’t quite so easy. There are groups on Facebook, for example, for just about any topic you can dream up. Can’t find one? Start one. Chances are, someone else is out there looking too.

Blogging or journaling can also be immensely helpful. There is something very therapeutic about writing down your experiences and the thoughts and emotions that come with them. If you choose a public blog, and really keep it up, be ready for outcomes you weren’t expecting! I have been blogging for a few years now and every once in a while someone will contact me and tell me my blog gave them hope as they lay in a hospital bed reeling from a diagnosis, or were up in the middle of the night searching the Internet for answers. When you throw your story out to the world, you never quite know the amazing ways it can come back to you!

For me, sharing my story took a sort of unexpected and massive turn when I wrote my book, “Defining the New Normal: A Guide to Becoming More Than Your Diagnosis”.  In this book, I use pieces of my story as a jumping off point to tackle every aspect of life I could think of when living with a major diagnosis. I also combined it with my professional training as an Integrative Nutrition Health Coach. So it is one part “How I did it” and one part “How you can too”. It is the go-to guide for thriving, no matter what the medical charts say.

The exciting thing for me about this experience is that for the first time I was able to take my story beyond the PH community. I very purposefully wrote the book for anyone facing a life changing diagnosis – be it rare disease, autoimmune, cancer, and so on. And there is no way I could have done this successfully without observing the cycle of support that happens in other disease communities, and listening to the stories of so many people, many of whom make an appearance in the book as well.

The truth is, it doesn’t matter if you’re curled up in bed with a journal and a pen, publishing a book, talking to a small support group, or addressing an audience of 1,000. What matters is that you share what you know. It helps you cope, it helps others cope, and it is at the heart of what drives us forward together.

In conjunction with my book, I am running a little project called #iDefine. Send me a picture of you defining your new normal with a diagnosis and tell me a little about it. Whether it is finding something new to do that you love, or getting back to something you thought you could no longer do at diagnosis, show me in a photo how your story defines the journey for you. I’ll put it up on my website in a slideshow and help you take a step to sharing your story with the world. E-mail pictures and photos to: and put #iDefine in the subject line. I look forward to hearing from you!

For more information on Colleen’s book, visit

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In Your Words: A change for the better

Posted on by Charlie

John Clarry gives his IPF diagnosis a workout

John ClarryIn life there are times when you have to change, and it’s a very lonely proposition. But when you do it — and you have to really put your mind to it — it can be very satisfying.

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in September 2014. I was really taken aback. When someone tells you that you have two to three years to live, it shakes you up. The thing that I thought of immediately was my wife, and how I was going to break it to her. It was terrible.

The diagnosis was the bad news. The good news was that there’s medication to help treat the disease, which I started taking in November. My doctor also suggested an integrative medical approach, which treats the whole person — body, mind, and spirit — and using every resource available for a healthy change in lifestyle.

My wife says I’m the oldest gym rat alive because I’m there all the time now. I go at least three days a week, sometimes four or five. Some days I’m not feeling as well, so I’ll take time to rest. It’s been an incredibly interesting experience because I know I’m sick, but I actually feel better now than I have in years.

To give the backstory on where I was at that time of my IPF diagnosis, a year earlier I was having knee problems due to osteoporosis. I had been walking with a cane and doctors were talking about knee replacement. I wanted to avoid it any way I could, so they put me on an exercise program through the physical therapy department at Cleveland Clinic.

Today, I do 12 machines, seven of them are lower body and the other five are upper body. I started with lighter weights, about 20 pounds, and I’ve worked my way up to an average 85 pounds (the same as my age). I do two machines that are heavy leg machines, one at 135 pounds and the other at 125 pounds, so I’ve really worked my way up in strength. I’ve gained weight and lost inches from my waistline at the same time. I’ve turned a lot of fatty tissue into muscle.

Before I was diagnosed with IPF I went to my gerontologist because I was tired all the time and not as active. Previously, I had had a very active life. I didn’t retire until I was 70. I got a chance when I retired from engineering to be an apprentice sculptor and I did that for about eight years. It was a wonderful experience. I’m still working in clay and doing sketches. But, other than walking, I wasn’t doing any exercise at all.

I had lost a lot of weight in my mid 60s when I was diagnosed with Type 2 diabetes. My doctor wanted to put me on insulin so I asked if there was an alternative. They said I could lose weight and change my diet. He doubted I could do it. He said if I went back in 30 days and had lost one pound we could talk about it. Well, I went back and I had lost 16 pounds. He was very pleased and I became his star patient. I actually lost about 75 pounds altogether. The Type 2 diabetes and my sleep apnea went away.

If I put my mind to something I can change my ways, and I did. It was the same thing when I started the exercises for the knees. Fortunately, I’m not on oxygen but I see people at the gym who are. They may not be going as fast or as hard as I am, but they’re just as determined. I’m a goal-setter and my goal is to see my grandson graduate from high school. He’s 13, so I’ve got to beat a lot of odds to do that. But, I’m moving up.

When I found out that I had IPF I talked to one of the trainers at the gym where I was going for physical therapy and told him I had a lung problem and I wanted to exercise my lungs. He told me that I could do it by lifting the weights differently. Every weight I lift now, whether it’s upper body or lower body, I do a breathing exercise with it. I take a deep breath, hold, and then exhale. When I’m riding the stationary bike, I’m concentrating on my breathing just as I’m concentrating on the miles and the time. Part of it’s mental and part of it’s physical. You loosen your lungs and exercise them. It does feel uncomfortable for a while, but it goes away; you sort of break through a barrier.

“If I put my mind to something I can change my ways, and I did.”

I think that has really helped my lung capacity. My oxygen level when I was first tested was 89 and now it’s 97. That’s a huge change. You can see the surprise on a person’s face when they’re testing my oxygen level. Everyone sees that I’ve had a healthier progression.

With that being said, IPF is a very insidious disease. Some days I don’t really feel that hot, but I still go to the gym, whether I feel good or not. Instead of doing 30 minutes and seven miles on the bike, I’ll do 20 minutes. I don’t want to overdo it. If I’m not feeling well, I don’t do as much, but I still go. You’ve got to keep moving everyday.

When I was younger I didn’t exercise at all. It’s going on two years that I’ve been working out and I’m a great believer in it. My blood pressure, my heart rate, it’s all come down in the last two years.

I’m not as tired anymore, either. Before, I didn’t have the getup and go; I was falling asleep after dinner every night, and that was really annoying me. I’ve kind of reversed all of that. Now I can do about two hours of exercise every day, sometimes longer.

I believe in positive thinking. The first thing I do every morning when I wake up is smile. It gets your juices going. Sometimes it makes me laugh. I think the positive attitude has been survival on my part.  Attitude is so much of life. That’s the same way with having a disease like this. I was really down for about three or four days, and I don’t usually get down, but I was rethinking my whole life. I’ve decided I’m going to stay as healthy as I can to the end.

I attribute my progression to changing my lifestyle. I think a lot of it, too, is that my wife just refuses to even contemplate that I’m not going to lick this. She saw me do it with the Type 2 diabetes. I think it’s her positive attitude about it. If I’m feeling down, she’ll say, “Aw come on, stop being wimpy.” That’s the attitude I’m around. I’m around a very positive person.

My wife has had breast cancer twice and when she told me about her diagnosis the first time it was the same feeling that I had when I heard I have IPF. It’s like, “What? Did I really hear that right? I can’t believe it.” It just would not register. And then I started analyzing it. I didn’t feel doomed, or angry, just intense. I felt very intense. I was trying to figure out how I was going to learn enough about this disease to have a strategy. I was in a strategic mindset. I found I had all these assets: the clinic, a positive wife, a niece in the medical field, and good research, so I think I’ve done as well as I could.

I’ve had a good life. No matter what it is, my attitude is to either get an expert or learn as much as you can, then do whatever you can. If you have a chronic illness, evaluate your assets and your weaknesses. If you don’t feel you have enough assets, get more. Support groups are incredible assets.

Staying mentally positive is the biggest challenge. I have my routine now of going to the gym, meditation, and acupuncture. Having some type of routine is very helpful. Doing those exercises help me feel better and ready for the day, so staying active is really, really important.

I changed my lifestyle. Change is hard, but I stuck to it and I’m seeing results. I feel the results. I feel better — that’s the payoff.

Click here to share your story!

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Newsmaker Q&A: Dr. Gerald Salen

Posted on by Charlie

Community recently spoke with Gerald Salen, M.D., internist and gastroenterologist at Rutgers New Jersey School’s Department of Medicine, about the cause, symptoms, and treatment for cerebrotendinous xanthomatosis (CTX).

Dr. Gerard Salen

Dr. Gerald Salen

What is CTX?
The first challenge is the name: Cerebrotendinous xanthomatosis. We call it CTX for short. It’s rare. There are only about 200 people in the U.S. that I’m aware of with this condition, but there are probably  more. It’s recessively inherited; it requires two bad copies of the same gene, one inherited from the mother and one inherited from the father.

The underlying defect is abnormal bile acid synthesis. In our liver we make two primary bile acids from cholesterol, one is called cholic acid and the other is called chenodeoxycholic acid. We make these bile acids daily; they facilitate the digestion of fat.

In CTX there is a block in bile acid synthesis. Chenodeoxycholic acid becomes deficient and this is what leads to the disease. Since a person with CTX cannot make chenodeoxycholic acid, their body produces precursors, which we call bile alcohols. It also produces a chemical called cholestanol. Over time, cholestanol builds up and forms deposits on the brain, tendons, eyes and other tissues.

What are the signs and symptoms of CTX?
It’s important to recognize that the symptoms mainly affect the loss of brain function causing dementia, mental retardation, behavioral and psychiatric problems, cerebellar ataxia, pyramidal tract paralysis, peripheral neuropathy, and epileptic seizures. As the disease blossoms over the years, it leads to a lot of impaired neurologic function.

But, in addition to that, cholestanol deposits in the cornea of the eye and cause juvenile cataracts, which is an early sign of the disease. And, a xanthoma (a rare growth containing cholesterol) can develop under the skin or along tendons.

CTX patients can also develop premature osteoporosis, kidney stones and gallstones. Children with this condition often show unexplained, chronic diarrhea.

Like all diseases where there’s too much cholesterol, premature atherosclerosis and heart attacks can develop as well.

Diagnosis of CTX can be confirmed with a biochemical analysis of the blood and urine. Genetic testing can also be performed. Photo by National Eye Institute (NEI)

Diagnosis of CTX can be confirmed with a biochemical analysis of the blood and urine. Genetic testing can also be performed. Photo by National Eye Institute (NEI)

What are the first steps in identifying CTX?
A child usually begins to show signs of neurological deficiency, perhaps a problem in school, or they may have unexplained juvenile cataracts.

We also look for a xanthoma; usually as a teenager the patient would have unexplained swelling of the tendons. A xanthoma usually develops in patients with high levels of cholesterol in the blood, but CTX patients have lower than normal cholesterol, so having this disparity between the xanthoma and the low cholesterol should be a warning sign.

In addition, elevated cholestanol levels in the blood, elevated cholestanol levels in the bile, and the presence of bile alcohols in the urine are all chemical findings of abnormal bile acid metabolism that underlie CTX.

Who should be tested?
I think that all children with unexplained diarrhea, juvenile cataracts with no apparent cause, and unexplained neurologic conditions should be tested for CTX.

What does testing entail?
A blood test confirmation with a urine test. The classic test is the finding of increased amounts of cholestanol in the blood. The elevation confirms the diagnosis of CTX.

The diagnosis can also be confirmed by doing genetic testing.

How important is early diagnosis?
If the diagnosis can be made early, before the more devastating neurological symptoms develop, treatment can prevent additional damage and lead to a normal and effective life.

What is the treatment?
If we begin to treat patients with chenodeoxycholic acid (this is now an FDA approved drug), given in a sufficiently high concentration it can shut down all the abnormal bile acid synthesis in the liver. The treatment is not a foreign chemical in the body; we’re replacing what should be there.

When that happens, the abnormal chemical levels fall and the level of bile alcohols in the urine diminish, and there’s improvement in neurological function. This is a very important part. The treatment stabilizes the disease in two ways: it prevents further neurological damage and at the same time the body attempts to excrete the extra, accumulated cholestanol, and there’s an improvement in nerve function and the quality of life improves in the patient.

That is the key point. Often times with inherited diseases there really isn’t any treatment and people continue to deteriorate. CTX is unlike that in terms of treatment. We have a good treatment and patients who have been treated have gone on to live a normal life.

What is your involvement with CTX research and testing?
Although I’m a trained gastroenterologist, I participated in a special fellowship at The Rockefeller University in 1970 that allowed me to investigate CTX patients and discover the absence of chenodeoxycholic acid and be able to treat them effectively. I’ve had 30 years experience treating CTX patients and have treated about 100 patients now.

There was a scientist by the name of John Menkes who first discovered that there was increased cholestanol in the brain of CTX patients, but I discovered that not only was the cholestanol distributed in the brain, but in all tissues of the body. And, most importantly, that this was due to abnormal bile acid synthesis.

I then made the next important discovery that I could replace that chenodeoxycholic acid by feeding the patient a sufficiently large dose that would shut down abnormal bile acid metabolism.

I followed up with Dr. Menkes and proved that we could use cholestanol measurements in the blood as a diagnostic test for CTX.

Although it’s a devastating disease if untreated, one of the important points about CTX is that there is a very good and effective treatment.

Symptoms of CTX
In infancy
  • Diarrhea
  • Cataracts
  • Psychomotor retardation
  • Pyramidal/cerebellar signs (pyramidal and cerebellar are parts of the brain/central nervous system)
In adulthood
  • Neurologic dysfunction with variable time of onset
  • Mental retardation leading to dementia
  • Psychiatric symptoms (including behavioral changes, hallucinations, agitation, aggression, depression, suicide attempts)
  • Cataracts
  • Paleness in a particular part of the eye
  • Premature retinal aging
  • Xanthomas (skin lesions characterized by accumulation of lipid-laden cells)
  • Premature arteriosclerosis
  • Coronary artery diseases
  • Chronic intractable diarrhea
  • Gallstones
  • Osteoporosis
  • Increased risk of bone fracture
  • Epileptic seizures (EEG abnormalities)

Source: United Leukodystrophy Foundation (ULF)

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In Your Words: Optimistic by Design

Posted on by Charlie

Having lived with nephrotic syndrome for 37 years, Suzanne Hemphill strives to educate others about kidney disease.

I have been living with nephrotic syndrome since 1977. I was 16 years old when I was diagnosed. I think I’m a bit of an unusual case because we detected it early, which doesn’t usually happen.

Suzanne Hemphill at worki in her home office

Suzanne Hemphill at work in her home office

At the time, I was in high school and a photographer on the yearbook staff. We had a deadline for the yearbook and I was up all night long on my feet developing pictures in the darkroom. When I got home that morning my legs were so swollen they looked like elephant legs. My mother took me to the doctor and they didn’t know what it was at first. I was put to bed for a whole week. Then they scheduled a biopsy for me at Emory University Hospital in Atlanta and that’s when I found out that I had kidney disease.

I never really let it affect me because steroids always worked. I’m blessed that I’m not on dialysis and I haven’t needed a transplant. After 35 years of being on and off steroids, though, my periods of remission started getting less and less. It got to the point where I was only in remission for a month and I would relapse right after I came off the steroid. It was just awful. I didn’t know what I was going to do.

Fortunately, I’m on the board of the Kidney Foundation of the Greater Chattanooga Area in Tennessee and one of our board members is a nephrologist. I found out that the Southeast Renal Research Institute (SERRI) was doing a clinical trial on a test drug. With some great effort, on my second attempt, I got into the trial. I’ve been in remission now for almost 16 months, which is just stupendous. I feel better than I have in 15 years.

They’re doing trials to learn more about the drug. They’re using it not just for kidney disease, but also for multiple sclerosis and several other things. It’s just fantastic. The steroids had quit working, so it’s been a Godsend. It’s awesome.

Hemphill shooting a function for the Kidney Foundation of the Greater Chattanooga Area

Hemphill shooting a function for the Kidney Foundation of the Greater Chattanooga Area

I’ve always had a good attitude and a bright outlook and I really think that makes a difference in how things go health-wise, but there have been a lot of periods of me not feeling well. I would swell so much; all that weight comes on so fast from the steroids. All of a sudden you gain 40 pounds. It’s just terrible, you feel terrible. So, it really has been a struggle over the past 37 years.

It is so important to catch this stuff early. One of my big goals for the kidney foundation was for us to be able to do screenings and a couple of years ago we got enough funds to have our own machinery to do them. Now we go out in the community and offer screenings so that we can help catch other people early. It’s very exciting.

An early sign of nephrotic syndrome is swelling in your legs. I know women especially don’t think a whole lot about swelling in their legs, but it’s something that people really should pay more attention to. Some of the other signs are that if you’re losing protein in your urine it will get darker in color and it gets foamy. Diabetes causes a lot of kidney disease, although that wasn’t the case for me. High blood pressure is another thing that’s bad for the kidneys.

I think it’s important to have a good relationship with your doctor. You want to have a doctor who will sit down and talk to you and you can ask all the questions that you want, and they’ll answer them in a way that you understand. Don’t ignore things because the sooner you can get treatment, the better off you’re going to be. I’ve learned that there are consequences to waiting.

You can lose 80 percent of your kidney function before you realize what’s going on, so it’s a huge deal to pay attention and get tested. The earlier you find out about it, doctors can help prevent things from progressing so quickly. At the moment I have 82 percent kidney function. That’s a fabulous thing, but you have to stay on top of it. There’s no doubt that’s the most important thing, and that’s why I’m so passionate about people getting screened. I really feel like part of my calling is to help the kidney foundation. I would have never thought about doing anything for it if this hadn’t happened to me. It’s a really important part of why I think I’m around.

Being optimistic is very important. I think if you get down about having a disease, it can cause you to be sicker. Be optimistic, and really be proactive too. I think you have to be proactive, if you’re not proactive you’re not helping yourself.

I want to educate other people as well. I went on a trip with NephCure to Washington, D.C. a couple of years ago to try to get legislators to increase the budget for the National Institutes of Health (NIH). I’ve also gone before the Tennessee Legislature to help save the state’s renal disease program. I think it’s real important to stay involved.

Suzanne Hemphill, pictured second from left, advocating for kidney patients at Sen. Robert Phillips "Bob" Corker's office.

Suzanne Hemphill, pictured second from left, advocating for kidney patients at Sen. Robert Phillips “Bob” Corker’s office.

People should also really consider being an organ donor. It’s just incredible that you can do that; it totally changes a person’s life when they get a kidney transplant.

My whole adult life has been with kidney disease. It’s been a crazy road, but I’m still thankful. I have a really strong faith. I really believe that God’s going to take care of me, whatever it is.

I’m a graphic designer and I totally love life and I love what I do. The biggest thing that I’ve learned through all of this is how important it is to appreciate every single day. People who have never been sick, who have never had any kind of problem or anything remotely serious don’t have a clue how precious life is, and how wonderful it is to feel good. I have this personal expression that I say all the time: “Better is better.” Anytime I feel better, that’s what I say because it’s true. If you haven’t felt well for a long time, feeling better is a huge thing. There are some days I’ll be driving down the road and I’ll tear up and cry because I’m so happy to be alive and to feel good.

So, I always try to have a positive outlook because it makes things easier if you do. I think it’s all about how you approach things that makes life better. I thank God that I’ve been able to have a good attitude about things, even when it was terrible and awful.

I’m thankful today and have really been taking advantage of every terrific day.

Nephrotic syndrome (NS) is not a disease itself, but rather a set of signs and symptoms that result from damage in the kidneys’ filtering units (glomeruli). Damaged glomeruli allow too much blood protein to leave the body, leading to nephrotic syndrome.


Symptoms may include:

  • High levels of protein in urine
  • Low blood protein
  • Swelling
  • Less frequent urination
  • Weight gain from excess water
  • High blood pressure
  • High blood cholesterol levels


  • Some of the diseases that cause NS occur only in the kidney. These include minimal change disease (MCD), focal segmental glomeruloscerosis (FSGS), and membrane nephropathy (MN).
  • Sometimes, diseases that occur in other parts of the body can cause NS. These include diabetes, cancer, lupus, amyloidosis, and vasculitis.


  • NS is a common contributor of Chronic Kidney Disease (CKD) and responsible for 12% of kidney failure in adults and 20% in children.
  • 3 out of every 100,000 adults are diagnosed with primary NS each year.
    Males are more likely to be diagnosed with NS than females.

Nephrotic syndrome information source: NephCure Kidney International. For more information, visit

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So, what is sarcoidosis?

Posted on 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. 

So, what is sarcoidosis? - Infographic

Sources mentioned in this graphic can be found at: 

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

Posted on 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.



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Traveling for Treatment

Posted on by Charlie

The Children's Inn at NIH (Photo by Randy Sager)

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

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.

The Children’s Inn at NIH

“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.”

“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.”

-Dorothy Hightower, Media Relations Manager, The Children’s Inn at NIH

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.

Playground, Children's Inn at NIH, Bethesda, Maryland (Photo by Hoachlander Davis)

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

“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

See the sidebar for The Children’s Inn at NIH and The Edmund J. Safra Family Lodge at NIH contact information.

Nora’s Home for Transplant Patients and Their Families

“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.

Family room, Nora's Home for Transplant Patients and Their Families, Houston, Texas

Family room, Nora’s Home for Transplant Patients and Their Families, Houston, Texas

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.

“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

“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.

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.

Playroom, The Believe in Tomorrow Children's House at Johns Hopkins, Baltimore, Maryland

Playroom, The Believe in Tomorrow Children’s House at Johns Hopkins, Baltimore, Maryland

“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.

Living room, The Believe In Tomorrow Children's House on Wisp Mountain, McHenry, Maryland

Living room, The Believe In Tomorrow Children’s House on Wisp Mountain, McHenry, Maryland

“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.

Contact Information

Below 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.


Bannister Family House

San Diego, California


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


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


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


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


Family House provides low-cost accommodations for patients seeking medical treatment at Pittsburgh-area hospitals and their families, and offers a family assistance program for guests who may need additional financial support.

Gift of Life Family House

Philadelphia, Pennsylvania


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


Gift of Life Transplant House provides low-cost accommodations for Mayo Clinic transplant patients and their families.

Hackerman-Patz Houses


Hackerman-Patz houses provide short- and long-term housing for patients and families at medical centers in Maryland and Pennsylvania.

Healthcare Hospitality Network


This nationwide network of nonprofit organizations provides lodging and support services for patients and their families.

Hospitality Homes

Boston, Massachusetts


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


JW House offers Kaiser Permanente Santa Clara patients’ families low-cost accommodation or daytime respite.

Nora’s Home for Transplant Patients and Their Families

Houston, Texas


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.

The Edmund J. Safra Family Lodge at NIH

Bethesda, Maryland


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

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


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.



Angel Flight, Inc.

Tulsa, Oklahoma


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


This charitable medical transportation system provides free or discounted airfare, volunteer pilots, commercial bus transport, Amtrak tickets and gas cards for long-distance, and short and frequent medical trips, for patients in need and patient escorts.



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Winter Feast Part 4

Posted on by Charlie

Jennifer Stack

Jennifer Stack

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.

Cauliflower-Almond Soup, Served with Roasted Kale and Bleu Cheese Crisps.
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.
YIELD: Six servings
For the Cauliflower-Almond Soup



For the Roasted Kale and Bleu Cheese Crisps



For the Bleu Cheese Dressing



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Newsmaker Q&A: Nicholas Smedira

Posted on by Charlie

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

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.

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.

PTE Medical Centers

Medical centers in the U.S. that perform PTE include the following:

Brigham and Women’s Hospital

Boston, Massachusetts


Cleveland Clinic

Cleveland, Ohio


Duke Medicine Chronic Thromboembolic Pulmonary Hypertension Program

Durham, North Carolina


Massachusetts General Hospital Pulmonary Hypertension and Thromboendarterectomy Program

Boston, Massachusetts


Mayo Clinic Pulmonary Hypertension Clinic

Rochester, Minnesota


New York-Presbyterian Hospital/Columbia University Medical Center

New York, New York


UC San Diego Health System Cardiovascular Services

San Diego, California


University of Maryland Medical Center

Baltimore, Maryland


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 | Comments Off

Fight Club: Sandra Rock’s Struggle with IPF

Posted on 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.’

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

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

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.

Sandra Rock with granddaughters Iris, and Olivia, and husband, Jim.

Sandra Rock with granddaughters Iris, and Olivia, and husband, Jim.

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.

Jim and Sandra Rock.

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. 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.

Jim and Sandra Rock.

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 | Comments Off

Winter Feast Part 3

Posted on by Charlie

Jennifer Stack

Jennifer Stack

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.

Cheese Blintzes with Clementines Poached in Red Wine. Photo by Ben Fink, © 2012 by Ben Fink.
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.
YIELD: Six servings


For the Whole Wheat Crepes
For the Cheese Blintz Filling
For the Red Wine-Tea Poaching Liquid


Preheat the oven to 350°F.

For the Whole Wheat Crepes
For the Filling
For the Poaching Liquid

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CVC Close Up: Nicole Reynolds

Posted on by Charlie
Nicole Reynolds
Nicole Reynolds
CVC Senior Finance Manager



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.

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Disability Glossary

Posted on 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.

Photo: CDC

Photo: CDC

Click on a term to reveal it’s definition.

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 retirement, disability, Medicare and spouse’s benefits online (, 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.


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.

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 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 compilation, 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, are listed by each major body system.


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

Re-determination Review:

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.

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.

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 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.


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Patient Association Profile

Posted on by Charlie
Pattie Tuomey, President, COO, Pulmonary Fibrosis Foundation (PFF)
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 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.

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.

…it’s important for [newly diagnosed patients] to know that they have a resource, and that’s what we try to be.
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 medical 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 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 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 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

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 888-587-9158
PFF Patient Communication Center (PCC)


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