Patients Tell Their Stories
Click the linked names to read the full Journeys
The story of my journey begins in 1983. I moved to Los Angeles, met and married my husband (now deceased). My life was full with family events, work projects, vacations, and much fun and promise. While attending college and working full time, I began to notice I was short of breath during my busy day. I continued to keep up with my daily work routine, but had to drop my college track and dance classes as I could just not keep up with the physical activity the classes required.
I was diagnosed with PAH on May 15, 2007. I remember the day as if it was yesterday. I went from being a very physically active individual to being "someone with a very rare pulmonary disease." The prognosis was grim and I was given a life expectancy of three years. I broke down and cried and would have certainly found a dark hole of pity and despair to crawl into had it not been for the amazing care of my pulmonologist, Dr. Mark Yagan.
It was dusk and the men at the Afghan National Police headquarters were turning on the generator that powered the electric lights in the station. We sat in a haphazard circle that stretched across the furnitureless room, our bellies full of kabob and naan bread .... it was a perfect evening. Two days later I lay in a hospital bed on Bagram Airfield. I had collapsed the morning after returning from two weeks in the field, falling in and out of consciousness for more than four hours before I was able to belly crawl to a phone and call for help.
My journey with pulmonary hypertension began In November 2008. While visiting my son in Prince George, I noticed that I was getting winded walking up hills in the cold. I didn't think much of it and just rested when I needed to. By July 2009, my breathing got progressively worse. While walking with my sisters, I noticed that I was resting more and more while they continued. Previously I was able to keep up with them. Walking up a flight of stairs became more and more difficult also. I had to rest half way up - almost hyperventilating.
It started with stairs. Several months after the birth of my son, I carried a laundry basket up from our basement. When I reached the nursery I was gasping for breath. I sat down. Then I had to lie down — sides heaving, head swimming, heart pounding. Eventually my breathing slowed and I sat up, bewildered. I’m out of shape, I thought. I’m working too hard. I never get any sleep. Still, I called my doctor’s office.
Hello, I am Barbara Ching from Mississippi. I am now 66 years old. I have been diagnosed with PH since April 2002. What first drove me to go to the doctor was when I climbed stairs of any amount I thought I was having a heart attack.
In May of 1990, I was 29 years old. I was a nurse and mother of three planning my eldest’s child’s Kindergarten Graduation. My daughter was 4 months old, I was able to work 40 hours most weekends enabling me to stay home during the week and be a “stay-at-home” mom and everything was perfect in the world. I remember a close friend telling me that I seemed out of breath while carrying my daughter, but I dismissed it and reminded her that I had three children, ages 5 and under, and still had my “baby fat” and that when I stopped breastfeeding I was going to get in shape. The following month, while driving my sons home from Karate class, I felt my left arm go numb.
My journey began many years ago. I was diagnosed with a rare pulmonary disease before the age of 2 called idiopathic pulmonary hemosiderosis (IPH). I had it most of my young childhood, in and out of hospitals. Then early tween years I went into a remission and for many years following I led a normal, active life. Around age 30 I noticed I had more breathing limits and after having my first child at age 32 I felt even more limited.
It was the summer of 2006, six weeks before my 39th birthday. It was a Friday afternoon, and my husband and I had planned to leave for a weekend trip to the Gulf Coast. We were living in Texas at the time. I got home from my busy day of being a rehab medical sales representative and started up the stairs to my bedroom. About halfway up, I had the sensation that my lungs were caving in and that I had just run a marathon. I had to rest for a couple of minutes before I could finish the walk upstairs. In those few seconds, my life changed forever.
I was diagnosed with pulmonary hypertension in September 2001. I was informed that if I had no treatment, I might only live for two to six more years. Fortunately, there were two approved medications at that time: bosentan and epoprostenol. One was a pill, and the other was an I.V. therapy. Of course, I tried the pill.
I am a 66 year old retired critical care RN. I retired in November 2009 and my husband and I (with a golden retriever and a ragdoll cat) moved onto our 36' motorsailer and headed south from Portsmouth, NH. We spent most of 2010 traveling up and down the Eastern Seaboard, either by car or boat. We arrived for good, on the boat, on December 31, 2010 and went to work organizing our new home. About mid-February 2011 I began having a lot of trouble with my allergies which triggered my asthma.
It took five years for me to be diagnosed with pulmonary hypertension. The average time it takes for a diagnosis is 2.8 years. Looking back, I did all the things a good patient should do: I saw my primary care physician (PCP) regularly, pursued multiple referrals, and followed through with recommendations. Still, I wound up in the emergency room (once) and urgent care (twice).
It was back in 2006. I was just about to celebrate my 20th birthday and that’s when everything seemed to go downhill. I was always the overweight girl, so when I started losing weight I was quite happy about it, not worrying too much as to why. I knew my appetite wasn't what it used to be - I hardly ate anymore. Then I noticed I couldn't walk very far without stopping, which scared me, but I just thought it was because I was never big on exercising.
When I was two, I was diagnosed with asthma. So throughout my life, whenever I had breathing trouble, it was always my asthma, and it was always easily treated. In June 2012, I noticed I was getting winded and very tired with minimal activity. The weather was extremely hot and humid, so I chalked it up to my asthma.
I was nearing 40 when I decided it was time to start exercising. My cholesterol was elevated and I was surrounded with neighbors who participated in many various exercise activities. I loathed running when I was younger, but suddenly found myself in love with it. Progression was the key to building my endurance. Within a few months of training, I was finally able to run a 5K. Then, about a year after I started running, I began experiencing intense shortness of breath with exertion and a decline in my endurance.
My name is Jacqueline, but everybody call me Jacky. I was diagnosed with pulmonary hypertension (PH) this year in May 2012. Personally I think that my journey with undiagnosed PH goes back about 20 years or even back to my early childhood. In school I was never good at sports, I was the last to be chosen for team sports or if they could let me out they would. To this day when I see people running, I admire them and wish that I could too.
My name is Gjurgica Kjaeva from the Republic of Macedonia. I was diagnosed with PH three and a half years ago. In my country, PH is listed as a disease that exists, but only in theory. I was lucky to be diagnosed comparatively early -- but without any treatment. I still buy sildenafil on my own, which is the only treatment that is available. So, we have a situation where the disease is unknown and unregistered, and where there are no treatments, drugs, or protocol to follow, and no PH specialists or PH centers.
I don't think it's an exaggeration to say that Dr. Raymond Benza and Dr. Robert Moraca at Allegheny General Hospital's Gerald McGinnis Cardiovascular Institute literally saved my life. My daughter, my family, my friends, and I are eternally grateful. Truly, my story begins at birth.
I was diagnosed with PAH in June, 2011 at the age of 57. I had always been very athletic and felt myself slowing down. I would walk miles just listening to music. More and more, I didn't feel up to taking those walks. I started feeling extremely tired so I stopped working out. I started to gain weight and I contributed my tiredness to the weight gain. In June of 2009, I was admitted to the Emergency Room after becoming so short of breath I could not walk.
August 2, 2006 was one of the happiest days of my life because my daughter Maleah Nicoll was born. Then, within days, my life took a huge turn. I went into congestive heart failure and almost died. I was in an intensive care unit for four days before I was taken by ambulance to the University of California, San Diego. The following day I underwent a heart catheter procedure and it was determined that I have pulmonary hypertension (PH). I was immediately put on intravenous (IV) medication as my condition was so severe. If I had continued to be undiagnosed, I would've died within 6 months.
I am Denneys Niemandt, a 52 year old male from the beautiful city of Cape Town in South Africa. My pulmonary hypertension (PH) story started on a beautiful sunny Saturday in September 2006 when my wife Sonja and I went looking for a new family car. At the car dealer I felt out of breath, my chest felt tight and I had a pain in my right arm.
In April of 2004, I noticed that I became short of breath anytime I walked up an incline or climbed the steps to our second floor townhouse. Over the course of a few weeks, I got worse with daily episodes of dizzy spells, bloody nose, and a few fainting episodes with more breathlessness. I had to struggle to speak in smooth, full sentences. I was unable to climb the stairs to my own home without taking frequent breaks.
I was diagnosed with this rare scary illness back in May 3, 2013 called Idiopathic Primary Arterial Hypertension (IPAH). My first visit to the ER was at Union Hospital. Doctors said to my husband, "We need to transfer her to Salem Hospital." I lost my life almost twice the night I was transferred, and then again the second night. I was in ICU for one week. The doctors and nurses wore very confused and did not know what was happening to me, all I knew was that they kept talking about the size of my heart.
It was toward the end of 2013 when I started to become aware that some activities were making me short of breath. I have always led an extremely busy life and, at the time, was working full time and dashing around from place to place. When I realized that I was getting out of breath, I simply put it down to being a bit out of shape.
In 2002, my senior year at Eastern Illinois University, the school year ended for me as it had every year – with a visit to my pediatric cardiologist, Dr. Barbara Santucci at RUSH Medical Center in Chicago. My relationship with Dr. Santucci started when I was only 4 days old. I was born with a congenital heart defect.
In July 2011, I started getting a cough that just wouldn't go away. I just kept taking cough drops hoping it would go away. Over the next couple of months, my breathing was getting bad. I couldn't even walk from the bedroom to the bathroom without being out of breath. I started falling asleep at work and was getting really bloated. I thought it would just go away.
My name is Carol. I have pulmonary arterial hypertension (PAH). I guess the first signs were early but were dismissed as asthma. I am 43 and was diagnosed 7 years ago. I went in for a routine check and my doctor said my heart rate had been high for a while and checked my oxygen level. She immediately called cardio and lung specialists who wanted to see me right away.
I was diagnosed on June 22, 2009. I'll never forget that day. I had been telling my primary doctor that I just didn't feel right and couldn't really take a nice, clean deep breath. He always said it was anxiety or menopause, so he put me on anti-anxiety meds.
I was diagnosed in November 2002 right before Thanksgiving, which was shortly after my daughter had turned seven months old. I was fairly healthy growing up, a little slower than the other kids, but I was told I was just lazy..hmmm. My husband, daughter and I went to have our first family Christmas portraits done when I became weak, dizzy, short of breath and ultimately, passed out at the mall.
Sometime in 2012, I started to become short of breath but attributed it to lack of exercise. In the beginning of 2013, I contracted the flu twice and was out of work for almost 2 months! I knew something was wrong because my shortness of breath wasn't getting any better. After my scheduled PFTs, I was told that I needed to be on oxygen 24/7.
PHA does not recommend or endorse any specific physicians, products, procedures, opinions or other information that may be mentioned in these stories. Reliance on any information appearing on this website is solely at your own risk. Stories shared on this website are general information and are not intended to substitute for informed professional advice. Each person is different and as such, may respond differently to treatments, thus the stories are shared with the hope that they may be helpful for those who choose to take a greater responsibility for their own health. Always seek help from a health professional.