The first question I like to ask anyone who makes a living doing what they love, is how they initially became inspired by their profession. And in the time I spent getting to know Trinity Hamilton (in our e-mail exchanges and phone conversations, and my subsequent research of her, her work, and her disease), her answer to that question is by far the most profound thing she said to me. But more on that later.

THE DREAM

Trinity Hamilton became a dancer by mistake. Or, more accurately, by coincidence.

When she was four, her dancing in front of babysitters and family members led her mother to enroll her in a ballet studio. By nine, it was an ongoing joke within the family that Trinity was going to skip college and be a professional ballerina. By 16, she was dancing six days a week and competing regularly.

“From that very early age, I was fascinated by dance,” Trinity said. “I never wanted to be a cheerleader, or hang out with friends after school – it was all about the dancing.”

By her senior year of high school, Trinity had a contract to attend BalletMet in Columbus, Ohio, which she ultimately turned down as the result of a debilitating back injury. A few years later, she was a dancer with Joffrey Ballet in Chicago, which The New York Times has described as one of the top three ballet companies in America.

Joffrey was everything she had hoped. She was “eating, sleeping, and living dance;” carrying out the dream that she had set for herself as a young girl. But in 2000, her childhood bouts of exhaustion (which she and her family had always written off as fatigue from dancing and going to school full time) were catching up with her. Whenever the dancers were given a short break, you could often find Trinity asleep in a corner somewhere. She began falling asleep on the train to work and on the train going back home, often waking up in seedy areas of Chicago. She began to speak lucidly, unaware of what she was saying, and hallucinating regularly. Finally, her ballet master suggested she see a doctor, and when she was 20 years old, Trinity was diagnosed with Narcolepsy.

THE DISEASE

“Myself and the specialists I work with actually don’t know when I started getting narcoleptic symptoms,” she said. “Because looking back, my parents and I realize that sleeping had been an ongoing struggle of mine for quite some time.”

The medication Trinity was prescribed “helped her get through the day,” but two years later, she started feeling symptoms of cataplexy, an affliction often associated with

Narcolepsy in which patients suffer chance bouts of muscle loss and/or weakness. These attacks, while usually brought on by strong emotions, occur at random and have proven to be fatal.

“I didn’t even know what cataplexy was,” Trinity said. “I was diagnosed, and soon prescribed medication. It helped, but I was always so afraid of falling on stage. And with that fear came doubt and lack of confidence. That’s when things started to get really bad for me.”

THE DOWNFALL

In the years after being diagnosed with cataplexy, Trinity said she began losing everything – confidence, the ability to stay awake during rehearsals, control over her limbs and movements – everything.

In 2004, she left the stage and moved to Florida to be closer to her parents. She attempted to remain active within the dancing community, teaching and choreographing at schools, and even acting as the ballet director and resident choreographer for the New Tampa Dance Theater. But when she was alone, a perfect storm of pity, self doubt and regret boiled inside her. She gained weight, left the house less and less, and became stuck in her own depression.

“I was at the lowest of my lows,” she said. “I remember looking in the mirror and not seeing a dancer anymore. I had no idea what I was doing with my future. It was a very scary time for me.” In the midst of her depression, Trinity crossed paths with a “phenomenal and remarkably patient” individual named Dr. Neil Feldman, who currently serves as the Medical Director of the St. Petersburg Sleep Disorders Center in St. Petersburg, Florida.

Dr. Feldman understood. He listened. He offered Trinity medical advice in the form of Xyrem, a common medication prescribed for Narcolepsy. Trinity was opposed to the idea of going on Xyrem. She feared the lifestyle change, and the drug’s potential side effects. After years of patiently attempting to convince Trinity that Xyrem was her best option, Feldman set up an interview between Trinity and one of his patients that was on Xyrem. That helped.  “A few days later, I began taking Xyrem,” she said. “And everything started changing. Everything.”

THE RESURRECTION

Finding a suitable dosage and getting used to the side effects of Xyrem proved to be a difficult process for Trinity, but once she found the right balance, everything began to fall into place.

After the first month, she was not only staying awake throughout the day, but remaining alert as well. She could drive, she could think – she felt productive for the first time in years. During the second month, the symptoms for cataplexy became dormant.

“Slowly but surely, I began feeling normal again,” she said. “And that’s when I realized I needed to get into shape.  I was given a second chance, and I had to give it another try.”

It’s a long road from your self-described lowest low to a stage on the Las Vegas strip, and it didn’t come easy. Hamilton put herself through a “Biggest Loser-style boot  camp,”practicing hot yoga regularly, hiring a personal trainer, shedding pounds; whatever it took to gently ease her point shoes back on. By the summer of 2008, nearly a year after starting Xyrem, she was back to her “fighting weight.”

She attended a professional workshop in San Francisco with Lines Ballet Company, and it was there that Trinity was given the big push she needed.

“The artistic director of Lines was a former colleague of mine at Joffrey,” she said. “And he kept encouraging me to stop teaching and get back on stage. That was a big jump for me, having other professional dancers telling me that I needed to be performing.”

After auditioning for a few companies, she packed up and prepared to move to L.A. Days before she was set to move, she received a call from Cirque du Soleil asking her to come audition for Mystère in Las Vegas. She flew to Vegas and auditioned on Halloween day, 2009. In mid-November, Cirque called back with their offer. A month later, Trinity was living in Las Vegas as a working dancer with Cirque du Soleil.

“It’s funny,” she said. “Attending Joffrey was my childhood dream, and once I started getting back into shape, Cirque du Soleil was everything I wanted for myself. It was one of those amazing dream come true situations. Again.”

THE LIFE

Here’s how a day in the life of a Mystère dancer typically works: You arrive at the Treasure Island theater by 4 p.m., rehearse, do a show (or two), leave at 11:30 p.m., home by midnight, wind down, go to sleep. You’re off Thursdays and Fridays, two weeks in January, a week in May and a week in September. You work every holiday, totaling roughly 475 shows a year.

Trinity’s first year in Vegas was tough. She didn’t know anyone, she was getting used to the town and the lifestyle, adjusting to a new sleep schedule, and so on. It was all work for her.

“It was important to make sure I could live up to the challenge,” she said. “So for that first year, I was firing on all cylinders. I had to make it through that first year with no problems.”

The hard work paid off. Her dancing was strong, her confidence was newly fulfilled; she was back to living her dream.

THE MOTIVATION

Today, Trinity has made a life for herself in what she describes as a beautiful town. “Vegas has this persona of being… Sin City,” she says with a laugh. “But outside of that, it really is a lovely town, a sprawling suburbia off the Strip. It’s actually a very normal life.”

When I ask her if her sleep is okay, she eases out a, “Yeah,” with an audible sigh of relief.  “I have to make a point to sleep,” she says. “So sometimes I miss out on things. It’s Vegas, so there is something to do at every hour. But birthday parties, or get-togethers after shows, I usually have to skip out on those. Sometimes I’m asked to volunteer for PR gigs with Cirque, which I’d love to do, but because they are early in the morning, I just can’t. Medically, I can’t. It’s a little tough, missing out on those social engagements, but I have to get eight hours of sleep.”

When I broach the issue of how Narcolepsy is often depicted with humor in pop culture, Trinity’s tone becomes serious.

“It is an extremely misunderstood disease,” she says. “In terms of how it is depicted, it’s just a matter of getting people educated. People think that Narcolepsy is uncommon, and I know it is considered a rare disease, but statistically, it’s as common as Lou Gehrig’s and MS, I believe.” (According to the National Library of Medicine, approximately 15,500 Americans live with Lou Gehrig’s disease, 155,500 have Narcolepsy, and roughly 300,000 people suffer from Multiple Sclerosis.)

“You bring up Narcolepsy, and people know it as that falling-asleep disease,” she says.  ”But there’s a seriousness about it that people should be aware of. The more education there is about it, the closer we may be to finding a cure.”

When asked if she has any advice for people who are afraid to fight for their dreams, Trinity’s response is optimistically direct.

“Everyone has challenges in their life,” she says. “Even in the darkest of times, I reminded myself that I had to value and appreciate what I had. I honestly do not know what inspired me to become a dancer. That remains one of those beautiful mysteries. But I’ve always been inspired by other amazing stories. By people who have fought in wars, or have other diseases, or stay at home and raise their children. We all have our challenges, but in terms of living out our dreams, of taking that leap, the biggest fear is within ourselves.”

It’s interesting that Trinity gains inspiration from other amazing stories. Call it a hunch, but it wouldn’t be surprising if hers inspires a few people as well.

PHA’s mission is to find methods to prevent and cure Pulmonary Hypertension (PH), and to also provide for the PH community through support, education, advocacy and awareness. An arduous undertaking, considering that there are currently upwards of 30,000 Americans living with PH today.

Our community is a huge tent for anyone affected by the disease.

Soon after Dorothy Olson was diagnosed with PH and given two years to live, she was discouraged yet determined. Inspiration paved way. She was connected with Teresa Knazik, a fellow PH patient. Letters were written, pen-pal groups were formed – an organization was shaped. And soon after Olson, Knazik, Pat Paton and Judy Simpson sat around a Florida kitchen table to share everything they knew about PH, the Pulmonary Hypertension Association was born.

“From our earliest days, PHA has provided opportunities for support and connection, patient (and now medical) education, and integration of medical professionals into our organization,” said Debbie Castro, Volunteer Service Director for the Pulmonary Hypertension Association, and Adrienne Dern, PHA Vice President.

What makes PHA so innovative, Castro and Dern said, is their ability to connect patients with caregivers and medical professionals alike. PHA currently hosts more than 235 support groups across the country, bringing people together to support a shared cause.

“Our community is a huge tent for anyone affected by the disease,” Castro and Dern said. “[PHA] creates a strategic alliance between the families affected by the disease and the medical professionals who treat them.”

Although PHA started out as a single support group, the internet has allowed them to broaden their scope. In addition to increasing the amount of services to its core constituencies, PHA has implanted a number of online communities to help them reach more people.

“We have numerous online communities,” Castro and Dern said. “Including e-mail groups, a message board, daily online chats, and our latest offering – PH E-mail Mentors, which enable patients and caregivers to find someone like themselves and engage in a one-on-one e-mail relationship.”

In 2009, PHA moved away from its “one size fits all” programming and developed targeted programs for specific patient groups, a shift that PHA said has significantly enhanced what they can offer to their patients.

Today, PHA, at the helm of President and CEO Rino Aldrighetti, prides themselves on bringing people together. Whether it’s through an online chat or a kitchen table discussion, PHA, as their website states, turns strangers into friends.

“We have stayed true to our roots,” Castro and Dern said. “[We’ve] continued – but not altered – the vision and ingenuity of our founders. Just as they did then, we work every day to end isolation and seek a cure for Pulmonary Hypertension. So while the scale and scope have greatly expanded, we continue to follow their lead.”

“Drugs don’t work in patients who don’t take them.” — Dr. C. Everett Koop

I have seen this quote from the former U.S. Surgeon General used time and time again to highlight the opportunity of medication compliance in our health-care system. While this statement seems blatantly obvious, we often fail to communicate this very important topic. The health-care team (including the patient) has a huge barrier to overcome. How do we maximize the benefit of the life-saving medications that are available to treat chronic disease?

The Pink Stuff

Five-year-old Abigail goes to the doctor for a sore throat and comes out with a prescription for antibiotics. Even though it tastes pretty nasty, Mom pleads with her to take the commonly known “pink stuff ” three times per day for the full 10 days. Seems simple, but if you are a parent, you know how difficult this is to actually accomplish in the midst of school, work, nap time, changing little brother’s diapers and keeping the house clean for dinner guests. How many times have you been told to “take until it’s gone” or “finish all” but have been unable to?

I think we all know that antibiotics work best if taken for the full duration of therapy and yet most of us can admit to not following doctor’s orders at least once in our lifetime. Yes, the stakes are small here; maybe enduring a sinus infection for another couple weeks or even a perforated eardrum here or there, but what about chronic conditions? What are the stakes when we are talking about diabetes, depression, Pulmonary Hypertension or Huntington’s disease?

An injection? No way!

An accomplished teacher all her life, Barbara visits her primary care physician after experiencing several weeks of frequent urination and unexplained weight loss. She has had diabetes for years and takes her medication but she knows full well that something is wrong. She is shocked to learn that her diabetes has worsened and is being asked to take insulin via injection under the skin. Even though her doctor informed her that many people take insulin injections daily and that it really does not cause much pain, Barbara struggles to meet the goal of two daily injections, and often misses her evening dose. Does she not understand the devastating consequences of uncontrolled diabetes? Does she not trust the recommendation of her doctor? What is standing in the way of fully complying with the prescription that her doctor has given her?

Barbara has a life-threatening chronic condition, not unlike nearly half of all adults in the United States, according to the Centers for Disease Control (CDC). You would think that Barbara and her doctor would be doing everything possible to make the best use of the life-saving medication that was prescribed. But there is something else going on here. Barbara and her doctor are contributing to a compliance problem that is costing us $290 billion dollars annually. When medications are not taken as prescribed, we are not getting their full benefit and therefore, we are wasting money. She is also setting herself up to be one of the 125,000 Americans that die every year due to poor medication compliance. The numbers tell us we as a society have a problem, but do we really believe it?

The Five-minute Consult

The reality of today’s health care system is that we are busy and our physicians are equally busy. Barbara sees her physician every six months as he requests and gets about five minutes of quality time to discuss her health care. Do they ever get to talk about how often she forgets to take her insulin? How often does Barbara contemplate her compliance with her medications and what effect that may be having on her life expectancy?

In her job as a teacher, Barbara sends numerous e-mails to clients and co-workers, logs on to LinkedIn to keep in touch with colleagues in her field and related businesses, and keeps track of her finances online from her mobile device. She is not unlike most Americans in any given socio- economic status. Almost all of us participate very frequently in social media and other electronic means of communication when it comes to everything EXCEPT our health. For many reasons, we are hesitant to keep our medical information online and our physicians are hesitant to communicate with us outside of the office visit, but at what price? What is it going to take for us to start communicating as a health care team?

Full court press or one-on-one?

According to the National Council on Patient Information and Education, medication compliance is America’s “other drug problem,” and it is going to take efforts at every level to realize lasting improvements. Every member of the health care team has a stake in this game and everyone is at least talking about it. The American Medical Association (AMA) has position papers, CDC offers numerous articles and recommendations, almost every patient and provider organization references the problem and even Wikipedia has a nice online synopsis of medication compliance. There is no doubt that it will take a change in the way our health care system operates to make significant progress in the way patients take their medications, but the first step in this crucial battle is patient-physician communication. Both parties taking the time to agree on informed and realistic expectations will be time very well spent. Physicians giving their patients real and concrete explanations of the prescribed medication so that there are values associated with compliance is critical. Patients engaging in an honest relationship with their physician, listening to advice and demanding more when appropriate is absolutely necessary. We are wasting precious health care dollars here and it threatens our lives! So, take a look at how you are treating yourself and next time you are at your physician’s office, ask this question: “Are we doing everything we can do to maximize the benefits of the medications that have been prescribed?”

We want to hear from you!

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In late January, I traveled to downtown Manhattan with the sole intention of taking pictures of Dennis Stavropoulos at Ground Zero. I had met and spoken with Dennis several times, including conducting two phone interviews for this story. I had talked to him at great lengths about his time as a detective with the New York Police Department. About how he, and the rest of city’s responders, had been dispatched to lower Manhattan after two planes flew into the World Trade Center buildings. His story, while harrowing, was missing context – it was missing the accuracy of visual imagery. So I proposed that we meet, visit the 9/11 Memorial, and reminisce, which he was fine with, until the day came.

“We were down there to do a job.”

I met Dennis on the corner of Albany and West Streets, directly across the street from the Memorial. When he showed up, his obvious anxiousness made it clear that he did not want to go in. He’d been there. He’d seen it. He’d stood beneath the tower that looked like it had “been hit by Godzilla.” He had witnessed. He had worked. And he had no interest in going back. How, or why, could I argue with him? What he soon proposed was an impromptu tour of New York City and its surrounding boroughs. New York through his eyes. I’ve been to New York dozens of times, but as I soon learned, you haven’t seen New York until you’ve seen it through the eyes of a New Yorker.

Dennis Stavropoulos was born and raised in Brooklyn, NY. He grew up as a part of what he describes as the final stickball generation. A neighborhood boy. And as we walk around the streets he was raised in, he describes the “true” New York from his youth. The French Connection New York – with the subway cars tagged heavily in graffiti. The Son of Sam New York – when members of the neighborhood put aside their differences to combat a local terrorist. The Taxi Driver New York. “Taxi Driver is the New York from my childhood,” he said through a deep, purposeful Brooklyn accent. “You’d walk down 42nd street and you’d see it all: the X-rated theaters, the casual drug use, the casual theft, now there’s a Disney store on 42nd street. It’s a very different city today.”

It’s interesting to hear Dennis relate his early years to so many different films, because that is exactly what his latter years reflect: the framework of an influential motion picture.

New York Undercover

When he was 21 – after high school and a bit of college – Dennis became an EMT based out of Bellevue hospital, responding to shootings, overdoses, baby deliveries, you name it.

After six years, he joined the police academy on a whim of encouragement from some of his friends who were doing the same.

“I went undercover…I mean REAL undercover.”

“Joining the police department wasn’t really something I had always thought about,” he said. But soon after graduating from the police academy, he was walking his own beat – responding to calls, taking reports, making arrests, and so on.

Looking to make a career out of the NYPD, he transferred to narcotics, which he describes as a dangerous but exciting way to move up in ranks within the department.

“I went undercover, not just in plain clothes, I mean real undercover,” he said. Walking past Washington Square Park, for example, he tells me how he used to buy crack from drug dealers in the park, and watch from afar as police would raid the park moments later. “That was the job – setting up drug deals, working the players of that culture.”

In 2001, after he had made detective for “flourishing” as a narcotics officer, his undercover assignment ended. And then it happened.

Complete Chaos

On the morning of Sept. 11, 2001, Dennis was assigned to work an election poll in uptown Manhattan. When news broke that a plane had hit one of the towers, Dennis waited eagerly for instructions from his command. Then the second plane hit. Then the first tower fell. Dennis closed down the poll and was ordered downtown.

“By the time I got down there, the entire city was covered in a thick, dark cloud of smoke,” he said. “There was a layer of debris in the streets, people were running, screaming everywhere. It was complete chaos.”

Upon arriving downtown, Dennis was assigned to help secure the site, which he continued to do for several weeks following the attacks. For months after, Dennis worked on a landfill in Staten Island, sifting through the debris of the World Trade Center.

“You just have to keep doing what you’re doing.”

“We found everything at the landfill,” he said. “Bones, body parts, wallets, firearms, bullets, office supplies – everything. I didn’t really think about the bigger picture of it all while I was there.”

It is because of his time cleaning up debris downtown and at the landfill that Dennis remains averse to visiting Ground Zero.

“It’s difficult to explain,” he said. “We weren’t down there working as heroes. We were there to do a job. We worked at least 16 hours a day, digging up everything you can imagine. We didn’t reflect or pause. We worked.”

Every night, he’d go home and wash the dust out of his eyes and ears, and blow the dirt and grime from his nose. He’d sleep whatever few hours he could, wake up, and do it all over.

Jump ahead eight years and Dennis, now working in the medical examiner’s office, became very ill very quickly. Breathing had become more difficult, and his level of energy was often flat lined.

“I was always healthy, I could do anything,” he said. “I was very active. I played on the softball team at work, I was always a golf junkie; but in 2009, things had really gotten worse for me.”

Jumping Hurdles

After several visits to the doctor, Dennis was diagnosed with Pulmonary Hypertension, a disease that causes abnormally high blood pressure in the arteries of the lungs. The disease, which currently affects nearly 30,000 Americans, is often fatal, and has yet to be issued a cure.

“When I left the hospital after being diagnosed, I was told what I had, but I wasn’t told the full extent of it,” Dennis said. “So I went home and started researching online, and that’s when I realized how fatal this disease is.”

After jumping through the many hurdles of health insurance bureaucracy, Dennis finally found a specialist that not only accepted his insurance, but that he trusted as well.

“Finding a specialist was a very difficult process,” he said. “But the cost of finding one you trust makes all the difference.”

“…That’s when I realized how fatal this disease is.”

Dennis has been taking Tracleer, a popular medication that helps combat the symptoms of PH, since early 2010, which he says has greatly improved his overall well being.

“Life is harder now, there’s no question,” Dennis said. “If I don’t think and I start doing something physically demanding, I’m soon reminded that I can’t do that. And although I have to take everything a little bit slower, I see such a difference with that drug.”

When asked if his Pulmonary Hypertension is directly related to his clean-up work post-9/11, he responds directly, nobly. “I certainly was breathing in a lot of dust and toxins,” he said. “I know other people with PH who also have other issues – emphysema, sarcoidosis, things like that. But my Pulmonary Hypertension stands alone, and the doctors don’t exactly know why. It would be presumptive of me to say 9/11 caused my PH, but it would seem plausible.”

Moving Forward

Today, Dennis lives in Staten Island near the base of the Verrazano-Narrows Bridge, or “the Saturday Night Fever bridge,” as he often calls it, working restricted duty for the medical examiner’s office. On days he has appointments with his doctors, he takes the 25-minute ride on the Staten Island Ferry to downtown Manhattan. On those days he likes to walk around the city, taking it all in, thinking, remembering.

He’s thought about leaving the city when he retires, but he can’t decide whether the demands of the hustle bustle outweigh its excitement.

When he isn’t working, he plays golf when he feels up for it, eats slices of square pizza in Brooklyn with his friends, and checks in on his parents every weekend. While watching the sunset from his apartment balcony, I ask him if Tracleer helps to reinstate some of his physical strength, where does he find the emotional strength to carry on? Given all he’s seen and been through, what makes it worth it?

“You just have to keep doing what you’re doing,” he said frankly. “You have to get to work to pay the bills. When you’re diagnosed with something and considered disabled, it’s easy to get down. There are good days and there are bad days.”

“But you have to wake up. You have to keep moving.”

By constantly moving, Dennis’ story continually evolves. The old maxim states that every New Yorker loves and hates the city that never sleeps both equally. Dennis would love to move away, but he’d hate to be far from his family. He’d hate to leave the energy, but he’d love to be somewhere warm. What will be next in this life filled with such cinematic virtues? I’m not sure. I guess we’ll have to wait for the sequel.

By Alex Withrow. As told to Alex and Taylor Scott. Photos by Alex. The Story is all Dennis.

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Our weekly blog has become a forum for sharing news, helpful tips, and the many inspirational stories of folks just like you that we’ve been fortunate enough to work with. Our Facebook and Twitter feeds are along those same veins, with daily quotes and bits of inspiration that we come across. The best part (at least for us!) of all of this comes from reading the comments and feedback that we get. A comment on a social media post, a “thank you” for having shared an inspirational story, a handful of “likes”, or the dozens of responses we get to the questions “where are you viewing from?” or “what advice would you give to someone…” are the things that give us the greatest joy. Living with a disease or a chronic illness can be a very lonely thing, and we are deeply moved and appreciate the opportunity to be the “kitchen table” around which our Caring Voice family gathers.

Well, add one more outlet to that list. We’re publishing a magazine.

Soon to hit your mailbox, if it hasn’t already, is the Caring Voice Community. We are going to start out with quarterly publications, and the first one was a joy to put together.

We had the opportunity to travel to New York and get a personal tour of the Big Apple courtesy of Dennis Stavropoulos, a New York City Police Officer, witness to 9/11, and Brooklyn native who is living with Pulmonary Hypertension.

Alex Withrow got to know Trinity Hamilton, Narcolepsy fighter and professional ballerina. Her story is remarkable, yet strangely familiar. She now dances in internationally acclaimed shows in Las Vegas, often with two performances a day!

There are personal messages from our President and Founder, Pamela Harris, and our Vice President, Samantha Harris. There are other articles that will hopefully put faces and names with the voices that you hear when you call Caring Voice.

We have tips on avoiding drug interactions, eating better, getting in shape, and understanding Health Care Reform. We are certain that these are good tips, not because they are coming from us, but because they are coming from Tim Robertson, CVC employee and pharmacist, Miranda James, Insurance Education and Counseling Attorney for CVC, and Rebecca App, CPA, CVC Director of Finance, and mother of three, one of whom has a chronic kidney disease.

The messages and stories in the Caring Voice Community come from those of us who work at CVC, advocates for living with disease and illness, and folks just like you. Just like all of us.

You can look for excerpts from the magazine here and on our social media links. If you’d like to order the magazine, or would like additional copies, email us at magazine@caringvoice.org or click here.

Thanks for listening, and good reading!

Maybe you can ease your hunger for oxygen by feeding the rest of your body?

Pulmonary Fibrosis is often the end result of another condition, like rheumatoid arthritis or exposure to harmful lung irritants such as asbestos.  It is part of a family of about 100 related diseases, and those with PF are often categorized by the root cause as opposed to the actual disease.  There is an entire class of diseases named for their cause, and all lumped under a diagnosis of hypersensitivity pneumonitis.  We refer to them as Farmer’s lung, mollusk shell lung, poultry lung, maple bark disease, and other catchy monikers.  Workers in our food industry are exposed to dust, mold, and other irritants put off by items being prepared for our dinner table.

Whenever anyone talks about food and health it eventually comes down to nutrients.  The knee-jerk reaction is to boost one’s nutrition by downing a handful of vitamins and dietary supplements.  Pills are, however, a poor substitute for eating a decent meal.

One of the dangers that comes with PF is when one overeats.  Trying to digest too much food or having a full stomach puts an extra burden on the respiratory system.  Living with PF also makes eating less compelling.  A better option, and one easier to manage, would be to eat less, more often.  That’s right; after a lifetime of admonishments to stop snacking, we’re encouraging you to munch away!  We aren’t becoming advocates for cookies and pork rinds, but frequent bites of vegetables, fruits, and whole grain snacks.  Much like the rest of your diet, we suggest an overall diet low in ugly fats (saturated and processed), cholesterol, and tons of sugars.  Your diet should be geared towards useful calories first, and satisfying your cravings second.  You don’t want to complicate a lack of energy with a lack of energy because your only meals are junk.

Your use of calories is equally important.  A competitive bicyclist is going to burn somewhere in excess of 1,100 calories per hour.  Sending a text is about seven.  Very basic activities can make effective use of your calories and help you to develop an active lifestyle.  Walking or taking the stairs can be as beneficial as jogging.  We know that living with a chronic lung condition makes exercise scary, but remaining sedentary creates a vicious circle.  Inactivity weakens your muscles, contributing to fatigue, which makes you less likely to exercise, which makes you less active, which weakens your muscles.  The wheel wasn’t invented for you, but it will keep turning.

The best method for managing your health is often creating a strong support group.  Not only will you be sharing concerns and ideas with kindred spirits, they can also often help to motivate your lifestyle choices.  Isn’t it easier to get up and walk if there is someone standing at the door waiting for you (perhaps a dog with a leash in its mouth)?  Exercise programs are much easier to initiate and maintain with the urging and support of a partner.  Peer pressure is a powerful weapon.

The same holds true for your dietary habits.  If you’re dining alone, it’s easy to pop in a frozen dinner or munch out of a bag, but try justifying that to someone whom you’ve invited to supper.  Plan your menus and meals out in advance.  Perhaps some strategic planning of your well earned snacks as well?  If you actually have a plan, it’s much easier to stick with it.

We can never remember if it’s “feed a cold-starve a fever” or “feed a fever-starve a cold”.  We do know this one by heart:

            Feed your machine to feed your lungs.

Don’t go air-hungry.

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Easily enough said, but the cause of your anxiety is pulmonary hypertension.  The prospect of not being able to take a deep breath is making you uncertain, scared, and sad.  What to do?  Maybe you should just focus on breathing.

Your body has two distinct “voices”.  Both of them generally talk to you all of the time, and you respond to both.  Like the devil on your shoulder, they’re constantly in your ear.  The good news is that you can turn one of them off.  It is, unfortunately, not the right one.  The trick is to teach your two voices to speak to one another.

Your first voice is internal.  This is the one that says, “Feed me.  I’m hungry.”  The second is the one that says, “Ohhhhhh, pretty.”  This one is external and you can turn it off.  The problem arises when your internal voice is reacting to stimulus, like illness, and the pretty flower isn’t doing it for you.  “I know it’s pretty but I feel awful.  Leave me alone!”

Norman Farb of the University of Toronto suggests that we have an ability to make the two voices talk to each other and calm ourselves down.  He points to “interoceptive awareness”, or coordinating the competing arguments of our stimuli.  Being more aware of the physiological condition of the body might help with controlling, or at least dealing with, subjective and emotional feelings.  Instead of rationalizing (I’m cranky because I’m sick) or reaching for a glass of wine, focus on your breathing and try to understand what your body is telling you.

In the vicious circle of health and illness, the stress of being sick can raise one’s anxiety, which can reduce the body’s immune system, which can promote the development and progression of disease, which leads to stress, which makes you…

You get the picture.

When your body experiences stress it produces cortisol.  This is a hormone that increases blood sugars and causes inflammation.  It also suppresses the immune system.  A study at Carnegie Mellon University showed that the inflammation and immune issues related to stress and cortisol aggravated things like the common cold, asthma, and cardiovascular diseases.

Sound familiar, PH people?  This study is talking to you.  Perhaps you’ve fallen for the all-or-nothing trap?  You used to be able to do it all.  You used to be healthy all of the time.  You used to have complete control.

When you’re a baby you can drink and breathe at the same time, like a human-snorkel.  When you’re about three months old, you lose the ability as your larynx travels south in your throat and you start to develop your speech muscles.  Perhaps growing up robs us of more than the ability to slurp like a giraffe?

When you were a child, you laughed, a lot.  You never tired of the Peek-a-Boo game, and simple things made you spit milk from your nose (not related to the snorkel-trait).  We played more, and expected less.  We frequently broke out in song (with no discernable reason or sense of key), and didn’t worry.

The key to “taking a deep breath” may be in looking back to our childhood.  A great exercise for controlling breathing is to hum, chant, or even sing a song.  You might be able to get things back in rhythm.  You might be able to harmonize your voices that are competing for attention.   You might forget whatever it was that got you worked up in the first place.  The right song selection may induce healthy laughter, in yourself or those around you.

If that doesn’t work, try making a mud pie.

Kind of a tongue twister, isn’t it?  With a nod to Popeye, “I am who I am who I am.”  Recent research by Duke University would seem to indicate that there is some merit to it, though.

Jack Nicklaus was one of the greatest to ever play the game of golf.  Even at the top of his game, he never stopped learning or practicing.  His game was never perfect.  Same with Bruce Lee, considered by many to be the greatest martial artist of all time.  Never perfect.  Famed choreographer Martha Graham said, “Practice means to perform, over and over again in the face of all obstacles, some act of vision, of faith, of desire.”  Martha Graham, perfectionist.

All of these people could be considered as having a Type A personality.   Much like artists, they possessed a personality trait that demanded attention to detail, and often exhibited “intense creative energy”.  They are driven, and are perfectionists.  The researchers at Duke studied over 3,000 patients, and found that those with a Type A personality also tested positive for alpha-1-antitrypsin (A1AT) polymorphism.

It seems that many things are linked to this genetic disorder.  The same study linked anxiety disorder, bipolar disorder, ADD, juvenile rheumatoid arthritis, and Parkinson’s disease.  So perhaps those obsessive-compulsive habits that you’ve developed aren’t all in your head.

Having alpha-1 means an increased risk of lung conditions, like emphysema.  The resulting shortness of breath can make perfectionism a hard ideal.  But there are things that you can do to help you get close.

If you smoke, quit.  Do it today.  Talk to your doctor, as there are programs and products that can help.  Also, avoid situations and products that can introduce lung irritants, like pollen, paint fumes, or from certain cleaning products.

Eat well, and use it wisely.  You should try to stay lean and fit, and this means plenty of fruits and vegetables, lean meats and fish, and exercise regularly.  You may not jump right into marathon training, but a vigorous walk would be good.  Not only will you be healthier, it will do wonders for your blood pressure.

Why should you worry about your blood pressure?  We’re talking about lung and liver conditions, right?

Living with alpha-1 can cause worry, anxiety, fear, depression, and stress.  There is a great deal of uncertainty, as a diagnosis is not a guarantee of showing symptoms, and symptoms are not a guarantee of having alpha-1.  Further, while it is treatable there is no cure.  If you’ve got it, you’ve got it.

While trying to live a healthy lifestyle will help you to relieve stress, having moral support could be the ticket to improving your quality of life.  Letting your friends and loved ones know how you feel is a good first step.  They are the ones closest to you and will best understand your quirks and moods.  Joining a support group, like through the Alpha-1 Foundation, will put you into a network of like-minded and like-feeling individuals.  If you’re just not sure, you can always speak to a professional counselor.

The important thing is to remember that you’re not crazy.  You’re genetically wired to be perfect!