Tag Archives: Pulmonary Hypertension
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September 7, 2012I was diagnosed with pulmonary hypertension in 1998, but my story begins two years earlier. I gave birth to my youngest of three daughters in February of 1996. Immediately, I started feeling exhausted all the time. I would wake up in the morning, feed my children breakfast, sit them down in front of the television, and fall asleep on the couch. I’d wake up in time for lunch, fix them something quick, send them out to play, and fall asleep. At 5 p.m., I’d wake up, make dinner and wait for their father to come home, where I would hand him the children and say, I’m exhausted from my day, and fall asleep. This went on for nearly a year, until we moved to Texas.
I thought the sleeping was more depression, which I had been suffering with since age five. When we moved to Texas, my two older girls were of kindergarten age and I sent them off to school. My youngest daughter and I would spend the day watching television and playing on the floor. During the summer after their kindergarten year, I began passing out. I didn’t tell anyone that I passed out, because, honestly, I thought I had fallen asleep. I thought I had woken up. But I would wake up on the floor, usually with my head throbbing, from hitting it some place.
The first time I passed out in front of someone, I was chasing my daughter around and I passed out in front of my sister and ex-mother in law. I woke up to paramedics around me taking my blood pressure, and who knows what else. I refused to go with them, because I didn’t have insurance, but promised to go to my doctor the next day.
I had been seeing a doctor, and for many months, I kept telling him how tired I was, how I could feel and even see my heart beat, not to mention having to hear it at night, when all was quiet. I told him how I was fainting. He gave me an antidepressant, and each time I would go in to see him, he’d up the dose. Until one day, a year later, I fainted in front of my younger sister. She ran and got my ex-husband, who took me in to see my primary doctor.
Luckily, he wasn’t there, so we saw his on-call doctor. He listened to my heart and actually listened to me and said, “This is not in your head. This is in your heart.” I remember that day so clearly. He sent me for an echo-cardiogram and the next day, I saw a cardiologist who gave me the news. It was a month later that I saw a specialist in Houston, Texas, Dr. Adaani Frost, who, on September 6, 1998, after I had a right heart catheterization and woke up on meds, diagnosed me correctly with primary pulmonary hypertension,
I will be celebrating my 14th year since diagnosis with a bang! I found PHCentral.org first and then PHAssociation.org, and right before my divorce was final, in 2008, I found Caring Voice Coalition, without whom, I probably wouldn’t be here, or else, I’d be in a horrible financial situation!
Thank you so much Caring Voice!!! You have been such fantastic help, not just monetarily, but emotionally as well. I don’t know what I would have done without you guys!!
Posted in Diseases, Featured, How We Help, Media Center, Uncategorized | Tagged Depression, fainting, phcentral.org, Pulmonary Hypertension, Pulmonary Hypertension Association | Leave a commentShannin’s (and little Zoe’s) Story
August 30, 2012Our beautiful little girl was born in August 2008 with a Congenital Diaphragmatic Hernia. This is a condition that 1 in 2,500 children are born with. She had a 50% chance of survival. Basically what happens, is that there is a hole in the diaphragm which allows the stomach, intestines, spleen and sometimes liver to move up in to the chest cavity and the lungs are not able to form properly.
We were diagnosed in utero and so we were as prepared as we could be for a situation like this. Zoe was born in Portland and within a few hours of birth was placed on ECMO ( a heart/lung bypass machine). It was touch and go several months. We were able to hold her for the first time when she was 1 month old.
Her CDH (Congenital Diaphragmatic Hernia) was repaired at 1 month old and she remained in the hospital on various ventilators and breathing machines until she was 3 months old. As her lungs got a bit better her pulmonary pressures did not. She was diagnosed with severe pulmonary hypertension at just a few weeks old. She has been on pulmonary medication since birth and at 10 months old had a central line inserted through which she receives a 24/7 infusion of medication. She is also on various other PH meds to help with her pressures.
All these medications have helped dropped her pressures slightly but they are still way higher than they should be. She is still on oxygen as needed, mainly whenever she gets sick. Medications for PH are incredibly expensive. One of the little pills she takes every day has a copay of $3000 a month, and that’s just the copay. We have really good insurance for her, but still would be stuck paying almost $40,000 a year for one medication. Caring Voice has come through for us and helped us with the copay for this medication our daughter so desperately needs.
Today, 4 years later, Zoe is an effervescent little girl who charms everyone she meets. She has come so far, you’d hardly recognize her from the baby who was surrounded by machines and doctors at birth. She still has a long way to go though. We are looking at her being on IV meds for the rest of her life. We are so grateful to Caring Voice and the support they provide to help ensure that our little girl can get the medications she needs and live the fullest life she can.
Posted in Diseases, Featured, How We Help, Media Center | Tagged childhood ilness, chronic illness, Congenital Diaphragmatic Hernia, heart/lung bypass, Pulmonary Hypertension | 2 CommentsEsen’s Story
August 2, 2012My journey began in September 1998 when I was diagnosed with PPH (Primary Pulmonary Hypertension). When I was first informed about my illness, I was relived because I had always known there was something wrong with me.
I was told in such a cruel way though. I had just started working in a law firm as a secretary and it was only my third day, but I had a hospital appointment in the afternoon so I took the afternoon off. I wasn’t going to go but something that day made me! I met my mum outside the hospital and we went in. The doctor asked me about my symptoms, which included fainting, blue lips, palpitations, and always finding it hard to catch my breath. He said he wanted an ECHO so I went into the next room and had to take off my top and bra. I felt scared because they didn’t let my mum in to be with me. The nurse put a cold jelly on my chest and did the examination.
We waited another hour before the doctor told us that I would need a transplant. I was given the name of the illness but no explanation as to what it was or anything, just that it was very rare. Then I was taken into another room where there were loads of student doctors, as the doctor thought they should listen to my heart and lungs to learn. I was in shock, I felt sick, and now I was being prodded like a guinea pig. Finally, I just burst into tears, but they kept on listening. It was one of the hardest days of my life.
I was admitted and then sent onto Papworth Hospital in Cambridge, England, where I got the best care. I came to understand my illness and realize it was now a part of me and we had to live together.
But I knew I would beat it.
I was put on the transplant list in June 2002 (during the World Cup!). My PH doctor, Joanna, was the first to mention the transplant waiting list to my family and me when I was about 22 years old. The doctors estimated that I would have to wait for 1 to 2 years, and maybe even more. I didn’t want to be negative about it. Instead, I wanted to keep a positive outlook on things, so I really didn’t listen to the doctor when he was saying all the bad stuff. I thought, “No, I’m going to get better!” And in nine months my time came! I had a heart and double lung transplant on March 18, 2003.
I spent a week with my transplant team early on in the process. I had tests; from blood tests to echoes to x-rays. They explained to me everything that I should expect about having such a big operation, including taking medication and all the possible side effects. What I remember most was one of the nurses saying to me that I would get facial hair and asking if I would be okay with that. My reply to her was that that would be a simple problem compared to the ones I have now. I also saw a psychologist to help me with my fears about the transplant and everything else I was worried about.
My family was my rock during this difficult time, especially my mum! She was, and still is my rock! My friends kept their distances. I think they were scared that they were going to lose me so they chose to bury their heads in the sand. The only support I got from the hospital was from the PH team and from a Macmillan nurse by the name of Sarah. I remember telling her that “this PH will never beat me, I will fight it until the end and beat it!” My mum always said to me, “if God gave this illness to you, he also [will give] you a cure!”
What gave me hope in the midst of my journey with PPH was meeting my husband to be in 1999! He gave me hope when I thought no one would want an ill person or someone who might die soon. But he loved me unconditionally and didn’t listen to those who were telling him to forget me. He fought for me and I fought my illness.
It was St. Patrick’s’ Day, March 17th, when I got the call. I was in my room, as I was bedridden, and watching my favorite soap, “Eastenders” and I remember my grandmother coming to my room with the phone and saying that a nice man was on the line. I didn’t think anything of it because I thought my fiancé was calling. I realized it wasn’t him, but instead my transplant coordinator, Steven. He asked if I would like to get my new heart and lungs, and I thought he was joking and said, “But I’m busy watching TV!” (I guess it was the shock.) I had an hour to get ready, so my mum took me to the bath to bathe me and I remember all of my family being there and how hard it was saying goodbye because it might have been the last time I was going to see them.
I was being brave, but my emotions were all over the place. I was happy, scared, sad, sick and tearful. I felt sad that someone out there was dying to save me but I tried not to think about this too much because it was very hard to deal with on top of everything that was happening. After my transplant, I wrote the family a letter to tell them that I was doing well and how their loved one saved me and gave me back a normal life. To me, they will always be my angels who were put on this earth to save me, and who I’m grateful for each extra day I have with my loved ones.
My life has changed forever! The transplant gave me back my life. It was like I was reborn. Before the transplant I was in a wheelchair, and on 24-hour oxygen and I needed help with dressing or bathing. I came home from the hospital a month after my transplant, and it took me quite a while to adjust to doing things for myself again. I was apprehensive of everything. I was scared that I would get ill again. I felt alive, yet guilty of it. I didn’t feel the need for oxygen but still wanted to use my wheelchair but my mum put it away! I was doing exercises the physiotherapist gave me which helped me to gain my strength back.
Today, 9 years after the transplant, my life is a happy one. I’ve been happily married since 2004. I don’t want to paint a picture of a perfect life after a transplant because it’s hard with all the medications’ side effects. They consisted of putting on weight and getting excess hair on your face and body. You get an appetite so be careful! I put on so much weight and had to lose it all! Two other side effects include very bad shakes and a puffy face from the steroids. I could always tell when someone is on steroids because my own face was the same! It may not be perfect, but when I think back to how I was before, I wouldn’t change anything.
It took me over a year to fully recover from the transplant. The first year I got CMV (Cytomegalovirus) and I was scared I made a big mistake in having the transplant. But once I recovered from that, everything got better and I got used to the medication (much simpler than the ones from PH) that I had took just twice a day!
The advice I would give to people who have been diagnosed with PPH would be: Be strong. Be brave. Laugh at yourself! Make fun of the PH, that’s what my mum and me did. And still do! There were days that I just wanted to give up to die and be done with it, but that feeling never lasted long! I think I’m the sort of person who cannot stay depressed for too long. I find happiness in the smallest things. Like I love opening a new jar of Nutella the most! Also, I think my family and husband help make me who I am. They give me the strength and love I need. My faith helps me too. Praying and believing in your dreams is vital to helping a person get through obstacles. To me, it doesn’t matter what religion you believe in, just that the power of belief is stronger than anything is possible. I think (and it might sound wrong to others) that everything happens for a reason and that you must always look for the good in that reason, in order to go on with life.
On the night of March 17, 2003, an angel saved me. I’m forever grateful to you. You gave me back a life I never thought I would see. I live each day a happy one with the people I love.
Posted in Diseases, Featured, Media Center | Tagged Heart Transplant, Lung Transplant, PPH, Pulmonary Hypertension, Share Your Story | 6 CommentsIrene’s Story
June 7, 2012
My story is probably not much different than anyone else’s, but I think it’s horrendous given my background.
First, I have been working since I was 10 years old, I am now almost 54. I am the poster child for independent, self-sufficient people. I was a single mom and raised my son alone, even while working three different shifts a week for 1 1/2 years (police work). I put myself through college early on and ended up with an Associate’s Degree. I finished my Bachelor’s Degree 2 years ago. I should point out that I was obese at this time and had been for many years and always it seems had blood pressure problems, I was taking blood pressure medication for years, but every time I would go see the doctor it would be really high, which we all attributed to “white coat syndrome” as I’m petrified of doctors, needles, etc.
Roughly two years ago, I started feeling wiped out all the time, and to my horror I was starting to have trouble walking more than a few feet at a time. I was out of breath with the slightest activity. I started to fail at taking care of myself in the grooming and hygiene department because honestly it would wipe me out for a whole day. I had a very physical job which was becoming more and more of an issue for me. I still maintained my workload and got things done, but I couldn’t give the property I was managing the attention it truly needed. I lived in a nice condo which I rented, finally paid my car off and finally after what seemed like forever, I was actually starting to get a grip on my finances. As I’m sure many know, being a single mom with no financial help is a struggle.
I started to cough a lot and along with that came episodes of passing out. It happened randomly, even while driving! I went to my primary care Physician who said it was Asthma. He treated me appropriately for that, but I wasn’t getting any better. I have a long history of respiratory issues, but nothing that wasn’t fixed with an antibiotic or two. Finally, after researching my symptoms, I went back to my Doctor and told him I thought maybe we should look at congestive heart failure. He sent me to a Cardiologist and CHF was confirmed. She started to treat me, but she also recommended I see a Pulmonologist to try and determine what may be causing the CHF.
The Pulmonologist put me through a battery of tests, all except the right heart cath which I cannot do, because my chances of complications being under anesthesia of any kind; even twilight gas or the like. All of the testing pointed to Pulmonary Arterial
Hypertension. The pressures in my lungs were off the charts, and my Brain Natriuretic Peptide results were in the mid 500′s. Not good. I started on a higher dose of medicine for the bp, medicine for the edema around my ankles and belly and two oral
therapies for the PH. I started to see a shrink as well because I did my research on PH and the current prognosis of the disease. So, in the meantime, I lost my job, lost my condo, had to sell all my belongings except the car which I needed for all the
doctor’s appointments I have.
“Miss Independent” was forced to move in with her son, daughter-in-law and toddler granddaughter. Their home is on the small side and while I am extremely grateful I have my wonderful son and his family, I now find myself living in an 8 x 10 room. To go
from being on my own for so long to a bustling, noisy household has been a difficult adjustment. I love my family so it is ok, but it is hard for me. Thank God I have qualified for disability, but I still insist on paying for rent, groceries, utilities, etc. I will not burden my son and his young family any more than I already am. Besides, they can’t afford to totally care for me. I have car insurance, a cell phone bill, which I need otherwise I would toss the thing; I pay COBRA premiums which are ridiculously high as I’m sure you all know.
Remember I said I finished my degree? Well I did that on student loans which are now due. I pay for my monthly medications, hospital and doctor office bills that my insurance does not cover. I have a couple of credit cards that I do not use, but have been paying off for years. I had to use those to survive after I lost my job, as I still had a lease to fulfill on the condo etc.
So fast forward to a couple of months ago. I honestly do not remember how I came across Caring Voice Coalition, but I did somehow and I went on their website and read all about them. These people are God-sent lifesavers! I applied for help and was
contacted immediately by Kristin. I was approved for help and it could not have come at a better time. They have saved my life; literally, as I was falling into such a deep depression about how the heck I was going to pay for everything, that I even worried
myself. I can breathe a little easier knowing CVC is there for me and all of the rest of you.
This organization is by far the best thing out there, and every one I have spoken with at CVC is caring, warm and truly engaged in my well-being. I can’t thank God enough for them. I can’t thank them enough for them! I wish I could win the lotto, not for me, but for my son and his family and for CVC to which I would donate a nice tidy sum! I would also donate to NIH and other research facilities in order to come up with a cure for PH and other lung diseases and disorders.
That’s my story, most of it anyway. Caring Voice are angels on earth and I am so glad they are out there for us. Spread the word about them – let’s do what we can to keep them going. Without them, an awful lot of us would be in big trouble. Thank you CVC!!
We are very grateful to Irene for taking the time to share her story. If you’d like to share your story, we would love to hear it!
Posted in Diseases, Featured, Media Center, Uncategorized | Tagged Caring Voice, CVC, Pulmonary Hypertension, Share Your Story, Support | 2 CommentsHave You Seen CVC’s Community Magazine?
April 26, 2012We told you last week about Community, CVC’s new magazine. If you haven’t received your copy yet, here’s what you missed!
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 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, New York. 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, in his 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 a 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 and 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 the medication helps restore 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 equally loves and hates the city that never sleeps. 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.
Posted in Caregivers, Diseases, Events, Featured | Tagged 9/11, Dennis Stavropoulos, Pulmonary Hypertension | 1 CommentTry Making Mud Pies
April 4, 2012You’ve just found out that you’re sick. You’re uncertain, you’re scared, and you’re sad. When anyone asks, and you tell them of your feelings, they shrug their shoulders and tell you to “take a deep breath.”
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 discernible 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.
Posted in Diseases, Featured | Tagged Pulmonary Hypertension | 4 CommentsWalking and Beating
December 12, 2011
My name is Dennis Stavropoulis, and I’m from Staten Island, New York. I’m a Detective with the New York City Police Department. I’ve been with the NYPD for
over 20 years.
I began my career as a simple beat cop, working the neighborhoods of Brooklyn. I was fresh out of the Police Academy and proud of my role. After a few years on the streets I was promoted to the Narcotics Unit, and it is here that I found my true calling. I would investigate, follow leads, and spent much of my time undercover, setting up and making drug buys. As an undercover officer, I grew, I flourished, and I was eventually promoted to Detective.
I was in between operations, and my Sergeant asked me to take a day and work an
election poll. They were holding local office primaries all over the city. It would put
me back in a uniform, and as it had been a few years since I had put on my blues, I
had to buy a new uniform that actually fit!
I awoke the morning of the elections and got into my new uniform. After a quick
trip to my office in Lower Manhattan, I jumped into my unit and headed Uptown to
work my detail. It was a beautiful morning. It was September 11, 2001.
I was inside the polling site and began to hear the first reports crackling over my
radio of an aircraft that had hit one of the Towers of the World Trade Center. Within
the first few minutes I could hear the sirens, as every emergency unit in the city
seemed to head downtown. People coming in for the elections were starting to hear
the news. I then heard over my radio that a second plane had hit the Towers. How
could this be? I was anxious to hear from my command.
After what seemed like days, a report came in that a Tower had collapsed. My
Sergeant finally told me to close down the poll, and get back to Lower Manhattan,
ASAP. As I made my way back to my Precinct I could see the dark cloud of smoke
and debris building over the island.
I was assigned to the World Trade Center to help evacuate the city, and after helping
secure the site, I was tasked with search operations. I would spend the next three
months, 16 hours a day, helping to guard the site and sift through debris. In the
evenings as the sun would set I could look through the remains of the World Trade
Center and see the light filtering through the haze of dust and brilliant crystals of
debris.
I began to work at the landfill in Staten Island where they were taking the debris, sifting
through to search for remains. I worked between the landfill and Ground Zero well
into 2002, never protected with anything more than a paper surgical mask.
I eventually went back to my normal duties, but as the years moved on I began to feel sluggish, I would tire easily, and I began to have difficulty breathing. I developed a loud cough that I couldn’t seem to get rid of. My normal routine became a daily challenge. I would get ready for work, head out the door, and have to grab a wall as I struggled to catch my breath.
My symptoms slowly worsened and I was eventually hospitalized. It was there
that I was diagnosed with Pulmonary Hypertension. It made sense, but they didn’t
explain the extent of the disease or how fatal it could be.
I’ve had to move to a restricted duty, and I’m now a liaison officer for The Missing
Person’s Squad of the NYC Medical Examiner’s Office. My PH may eventually force
me into retirement.
When I was first diagnosed, I was overwhelmed as I struggled to receive the care
and the medications that I needed. I worried every night about my future with the
Department, my health, and then I found out that my medication wasn’t covered by
my insurance. I’ve been a cop for over 20 years, but on a cop’s salary there wasn’t
any way for me to afford the cost of these medicines by myself.
It was a great relief and comfort to receive a phone call from Caring Voice Coalition.
A wonderful woman on the other end of the phone explained who they were and
how they could help. She asked about my diagnosis, asked about my health, and
then gathered some information to fill out some paperwork. With CVC’s help I’ve
been able to continue a regular regimen of medications and receive therapy for my
disease.
I’m not 100 percent yet, but things are looking better. I can get up the stairs without
resting, I walk around my neighborhood, and I even get out and play a round of golf
every once in a while. I’ve learned to appreciate these little things that I had started
to take for granted. My last echocardiogram even came back normal!
I’ll be forever grateful for the support of CVC and their team of caring voices. After
seeing the worst on 9/11, and feeling the worst before my diagnosis, and fearing the
worst after hearing the news, I once again have a quality of life. I may never walk a
beat again, but every day I wake up and I walk, and every day my heart still beats.
