Written by Jana

My name is Jana, I am 26 years old and I come from Slovakia. I had Pulmonary Arterial Hypertension (PAH) and one month ago I received a lung transplantation. I had started last term at university when doctors diagnosed me with PAH. I do not know exactly when my problems breathing started. When I was younger, I did a lot of sports. I was usually in good health, but more illnesses came on at university. The big problems came in small steps before I realized them. I was not able to walk as I used to before. The older people were faster, I always missed the bus, I could not go up to the hills. But I was thinking that it is because I am in bad physical condition. Then came one day in November 2009, when a group of students went on an excursion to walk up the hill. I had problems with breathing and I had to come back. I realized that something is not alright and I started to be really troubled. I went to my local doctor and she told me I should go to internal doctor, where I got the diagnosis in February 2010. In February I went to this doctor and she did an Electrocardiography (ECG or EKG) which showed that something was wrong. Then I had more tests like roentgen, blood analysis and Computer tomography scan (CT). These tests did not show anything clearly. My fear started to be bigger. At the Echocardiography in March 2010, it showed that I might have Pulmonary Hypertension (PH). This was for the first time I heard about this illness. The doctor called to the specialized centre for PH in Bratislava (National Institute of Cardiovascular Diseases) and after four day I went to hospital. I clearly remember this day. My fiancé had birthday and I went to hospital for the first time in my life. I felt really scared and nervous and I was confused. I exactly did not know what the illness will bring me, but I knew that something will change in my life. The doctors made me the standard tests which are specific for be diagnosis of PH (as ECG, roentgen, analysis of blood, CT, Echocardiography, Right-side catheterization of the heart, Complete functional overhaul of the lungs, etc.). The result of these tests was that I have idiopathic PAH, so the reason why I got this illness is unknown. I started therapy. The Complete functional overhaul of the lungs showed that I have very poor lung capacity. So I was sent to Clinic of Pneumology. As a result of test there, I discovered I also had Pulmonary Fibrosis. I started with therapy, but it did not work and I stopped with it after four months and I had only small dose of steroids. You know, with an untypical illness comes many questions. I have had a lot of them like: Why am I the elected? Why happen this to me? What had I done wrong? What should I do better? At the beginning I was totally frustrated and disappointed at my diagnosis, but it did not last so long. I realized I have my sweet fiancé who stays with me all the time, I want to graduate university, and I want to see more in my life… I am too young to die in a short time. So I started to fight my illnesses. During a half a year my life totally changed. I did not finish the university and many things were different, I got a lot of restrictions but I was able to handle with illnesses. I got married in October 2010. For us, the worst restriction was (and still is) that I can not get pregnant. But we decided that we want to adopt a baby when I will feel better. The next year, I was working on my thesis and learning on last exams. Finally I was successful and graduated in June 2011. But my happiness did not last long time. In May I got ill and I could not get healthy more than three months. I got worse. My legs and abdomen started to fill with water and my heart was under pressure. Unfortunately, in September 2011 I got salmonella, so everything was worse. My days looked the same. I slept so long in the morning, than I cooked and the rest of the day I stayed in front of the television. During the nights I could not sleep and my husband had to carry me upstairs. I have no energy to do anything and I came back to my bad moods. Finally, I got on the waiting list for transplantation of lungs in AKH Vienna in September 2011. I was lucky because after one month on the waiting list I got new lungs. Now it is more than one month after transplantation and I am doing quite well. I am totally self-sufficient. It is an amazing feeling twhen you can purely breath, without an oxygen machine. You can walk without problems. I am grateful that I got a new opportunity for normal life. When I look back, this one and half a year was the hardest in my life. I really appreciate my husband, my parents and my friends who helped me. They believed in me and they showed me I am strong to handle everything. I also thank all the doctors in Slovakia and in Vienna. I am glad that I am one of the transplanted people who can say: “I was born for the second time!” And I decided that the date of my operation will be my second birthday. Jana ''Rare Connect''

Written by Jessie, Lovin’ My Life with PH

When you are a little eight year old girl you have big dreams. Dreams of being a ballerina, a princess or a teacher. You don’t think about going to bed and never waking up again. You don’t think about leaving your family, friends and your favorite Cabbage Patch Kid doll. I did. I was diagnosed with primary pulmonary hypertension in 1988 as a scared little girl that instantly had to grow up. I cried for my mom to sleep with me in case I didn’t wake up. I took all the attention from my little sister who didn’t know what was wrong with her big sister and best friend. My parents divorced and everyone looked at me with those pity eyes. “That poor girl, she’s so young.” I began calcium channel blockers to control my pulmonary hypertension (PH) throughout my teenage years. I felt like an outcast all throughout school. I couldn’t participate in gym classes, sports or sometimes even slumber parties. I gained weight and used oxygen when I slept. I only had a couple friends that stood by me and cared. I never thought I fit in anywhere because thoughts of dying and never having a future were never far from my mind. Even though I went through a bad year or so of rebelling from my doctors and parents by smoking and not taking care of myself, I graduated high school with good grades and my PH was stable. I became pregnant at age 20 and that was not good for my PH but I decided to have my beautiful daughter, against my doctor’s advice. My PH doctor at the University of Michigan told me I would die if I continued with the pregnancy. I knew God had everything under control and I had a perfect pregnancy and delivery. I had a right heart catheterization in place during the caesarian section delivery. Things were great PH wise until a year after Brianna was born. I couldn’t carry my daughter, walk to the bathroom or do anything without gasping and occasionally passing out. I was told to get my priorities straight because my health was failing. I was put on epoprostenol in 2003 and that changed my life. The man of my dreams asked me to marry him. He knew of my PH and of the possibility that I might not have a long future, but he promised to make that future the greatest time of our lives. So far to date, he has kept that promise. My daughter is now ten years old and she is the greatest gift God has ever given me. She is sweet and caring and she loves to take care of me even when I tell her that I am the mom and I need to take care of her. She learned to mix my epoprostenol and she helps me with house work. I love her and my husband so much. I am truly blessed. I am no longer that scared, frightened little girl. I am a strong confident young woman with dreams and goals for my future. I won the United States Bowling Congress (USBC) Women’s City Bowling Tournament in Muskegon, MI in 2009. I took home six trophies the night of our banquet, but above all I took home the greatest feeling anyone with PH can have and that is “accomplishment.” The following year, 2010, I won first place at the USBC Michigan State Woman’s Tournament for handicap Singles 3rd Division. I even got featured in the Michigan Ten Pin flyer in which I brought light to PH and organ donation. Just because we have PH doesn’t mean we are destined to die. We are destined to LIVE!! If you would have asked me years ago where I would be right now, I would have said, “dead.” Not today. Now I can say with confidence that my future is full. I am a wonderful mother to a beautiful, PH free daughter. I am a great wife to the most loving, amazing and generous man I have ever met. I am the daughter to the greatest caregiver, friend and giving mother anyone could have. I am a wife, mother, daughter, bowler, knitter, scrap booker and friend. I am not PH! I know my future is not guaranteed, but neither is yours. I have good days, I have bad days and I have days that I think, “this is the end,” but I never give up being me. Believing in my future and striving for more life is what keeps me going. P.S. A little Viagra helps, right!!?? Jessie "Rare Connect"

We are hope by Jenny from Generetion Hope

We are hope. What does it mean to have pulmonary hypertension? I’m sure we all remember what it felt like when we were given our diagnosis. After weeks, or sometimes months of tests and doctors, as we sit in a small enclosed hospital room, we are finally told what is causing our shortness of breath, chest pain and fatigue. “You have pulmonary hypertension.” Well what the hell is that?!? I had never heard of this disease before, I had no idea what it was, or how much my life would change after that moment. Every day we are faced with challenges now, stairs seem to loom in front of us, we have to ask our friends to wait up at the mall, and maybe we are saying no to going out because we just don’t feel up to it. Floods of meds and new ways of life pour down over us, and we become nurses and experts in PH ourselves. We have to, and we all do so with the bravest faces. So what does it REALLY mean to have pulmonary hypertension? Well, “Pulmonary hypertension is high blood pressure in the arteries of the lungs that can lead to heart failure.” Jeeze, how scary does that sound? And there are websites out there with wrong or out-dated information that are WAY scarier than that! But that still doesn’t explain what it means to have pulmonary hypertension. Having PH makes you a warrior, a rock amongst the waves. You are a strong individual, who despite being dealt a bad hand, has come through it and still finds a way to smile everyday for just being here. People will put you down, people will leave, and others will tell you there’s something wrong with you, that you are inadequate in some way. NO you aren’t. You are more than adequate. You are over-adequate. We put up with incredible struggles daily just doing regular things. I have some people approach me asking what my Flolan pump is, or what that plastic looking stuff is on my chest. I always explain it to them, as patiently as possible, (but it’s become a pretty monotone, emotionless statement). “I have pulmonary hypertension; it’s a rare incurable disease. I have extra tissue in my pulmonary arteries so my heart has to work super hard to pump out blood. I’ve got a permanent IV in my chest that delivers meds to me 24/7 and without it I might not be alive today.” Most people respond with “Wow, I don’t know how you go through all that… I could never do that.” I just smile and say thank you, I’m making it through. We are strong. We are much stronger than those who put us down, and we are plenty strong to kick this disease. Hope is so important along with our strength. I know there was a time when I didn’t have hope, and it’s not a good place to be. Why act like you are dead when you aren’t, you know? We are amazing people, amazing young adults. Don’t forget that. We’re dealing with this illness in the prime of our lives. Some of us are just starting families, or just settling into careers, or starting school, excited for our future. We have all these dreams and ambitions, and then BAM, we have pulmonary hypertension. And that threatens to drain us of our dreams and goals…but we can’t let it, and we don’t. We keep on fighting, because we have hope, and we are strong! And look at us! Many of us have surpassed our “life expectancy” rates by quite a bit! This is incredible, and it only makes every moment of life better, every bit of food taste fuller, and every sunset more beautiful. So yeah, I know how much having PH sucks, just plain out SUCKS. But we should remember every day that there is hope, that we ARE the hope, and the strength, and that as PH warriors, we will get through this.

Πρωταγωνιστές - Meet the sufferers

Meet Emily !

Emily M.
Born in 1987
Diagnosed in 1988
"Hi! My name is Emily, and I have pulmonary hypertension and congenital heart defects. I have been on oral and infused therapies since I was 10 years old. I'm in school to become a nurse practitioner. I love spending time with family and friends, and I love to volunteer with my free time! I am involved in a local support group and have enjoyed attending PHA's International Conferences. I love speaking with and encouraging other PHers!"

Πρωταγωνιστές - Meet the sufferers

Meet Amy !

Amy Ford
Born in 1967
Diagnosed in 1986
"I am a long-term PH patient. I like to travel as much as I can and enjoy reading in my spare time."

Πρωταγωνιστές - Meet the sufferers

Meet Colleen !

Colleen Schnell
Born in 1975
Diagnosed in 1975
"I love making jewelry and spending time with my family and friends. I run a local PH support group and I host two PH chats online."

Πρωταγωνιστές - Meet the sufferers

Meet Carson

Carson Smith
Born in 1986
Diagnosed in 2002
"I am a full-time graduate student and I work full-time. I have had PH since the middle of high school. When I have time I love salsa dancing, yoga and traveling."

Πρωταγωνιστές - Meet the sufferers

Meet Anna !

Anna Bower
Born in 1983
Diagnosed in 2009
"I am a young adult living with PH, attending school and spending time with family and friends. I have many hobbies to keep busy and happy."

Πρωταγωνιστές - Meet the sufferers

Meet Kendra!

How old are you?
I am 11 years old.

When were you first diagnosed?
I was diagnosed in the summer of 2006, right before I started second grade.

Have you ever felt unable to do something because of PH?
I can't play sports, but that's okay because I don't really like sports anyhow. I can still play on the swing at the park, though, because I have a backpack for my oxygen.

How has your life changed since you've been diagnosed with PH?
I am homeschooled now because going to school full time was too tiring. I like being homeschooled because I can work on what I want when I want.

What is a message you'd like to pass on to other kids with PH?
Don't worry if you have to get a central line. It might bother you a little bit at first, but it doesn't hurt. Sometimes I even forget it's there.

Πρωταγωνιστές - Meet the sufferers

Meet Ryan!

How old are you?
I’m twelve years old.

When were you diagnosed?
I was diagnosed June 29, 2009, when I had a heart catheterization to check on things with my heart.

Have you ever felt unable to do things because of having PH?
I don’t really feel like I’ve missed out on anything or been restricted from doing anything because of PH. My heart defect keeps me from doing contact sports and tons of sit ups and pushups, but that’s okay with me. I have a lot of other activities that I can do, so I’m not disappointed with the things I can’t do.

What is a message you’d like to pass on to other kids with PH?
My message to other kids with PH would be to not let PH take over your life. It can be a scary thing to think about but so is a really hard math test or tryouts for a sports team. It’s not the end of the world. I know that if I continue to go to my doctor’s appointments and take my medicine, then I can look forward to having a long, happy life.