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Friday, March 6, 2015

A PH Story Continued

Part 2 by Eye Shaa Malik

My story continues...

I normally visit my doc once in two weeks for regular checkup but my last worst hospitalization was on 6 April 2014. It left a mark on my mind and it brings tears in my eyes when I recall that day. I've got severe heart arrest at 3 am I was at hostel nobody was there to take me to hospital I was extremely breathless with hell pain in my heart. I was brought to heart center at 8 am next morning (that added to the severity of stretch of heart hole's muscles with insufficient O2 supply) by my roomie, I am thankful to God and then to her for saving my life. I was swooned afterwards and undergoing various treatments like O2, nebulization and injections repeatedly...

I don't know what happened then & when I revived my senses I found myself half-dead still ongoing spate of treatments. My family arrived near 4 pm I evoked my will-power and didn't heed to anyone , my doc said you are not in condition to go ,I insisted but I got breathless again and was brought to another hospital the same evening .... It was a severe jerk that I wasn't able to get up for approx. a 'month' but thanks to some good medical attention & I took my rehab seriously, brought myself to the level of fitness... It was spring and undoubtedly in these 12 years this "Crop-cutting" season aggravates my symptoms. During this turmoil I've written a poem "My scattered breath" that justify how my condition fully cox when you can't breathe nothing else matters!
            “My Scattered Breath"

        Night prevails to bring some rest...
        Even the birds flew to their nest...
       To sleep soundly is my quest...
       But being valetudinarian I am arrest...
       Spring's brutal to me ever, yet!
       Can't blame the crops that harvest...
       Once again I'll have to pass it like a test...
        Cox having "PH" is not a jest...
         Lots of fears, if it’s last spring lest!
          Dear lord! Waiting for you to manifest...
          The eternal heal that reveal the zest!

 My focus is to keep myself psychologically healthy. My parents have always told me that you are "RARE" not "SPECIAL" so my "expectation level" for care and affection from others is very low .......I cordially thanks my caregivers and try to return something to them (that can be a smile :)). I think when we are ill we can waste too much energy being mad or being glad about how people are caring for us, when we should be really there caring for others, our illness doesn't exempt from reaching out in fact, I think we are more accountable because we can understand journey better than those who have not yet taken it. I feel like now that I have PH I am aware of every my single breath to thank.  Never in my entire life anyone sympathized me because I never painted a sorry picture of mine and I feel that’s my success . Everyone and I mean each and everyone says this " You don't look like a patient " until unless I tell them that there is something wrong inside , my nails and lips give them a ill bit of clue rarely but I often hide it with some lip and nail colors..

One thing for newly diagnosed patients with PH or any other chronic disease... Look! You are a higher, plight till last breathe, yes you are bearing up, but who isn't? In one way or other everyone is the part of any struggle. Never ever give up & keep marching forward. Everyone has to go one day, take your medication & rehab-process seriously, smile for your love ones and get out of dismal outlook and prove the world that you are a "WARRIOR”. Once you adopt things turn easy for you, HAVE A COMPLETE FAITH IN GOD. Keep your mind spiritually positive & patiently wait HE is the best healer, you all definitely be rewarded for this pain. He is aware of your struggle and the midnight sky and the silent stars have been witness of your devotion to freedom and of your heroism.

Friday, February 27, 2015

A PH Story

Part I

By Eye Shaa Malik

Everyone has a story.  Here's mine...

How long you have been with PH? What medication are you on?

It’s been more than a decade, approx. 12 years, I am 21 and I was diagnosed with ''severe'' pulmonary hypertension in June 2003 due to large VSD (ventricular septum defect) with bidirectional shunt after angiography. Prior to that I have had a "small" congenital VSD (a small hole in heart) but when I was 3 it was “filled” naturally, and I was alright without “surgery”. I lived a healthy life until I was 9.

I found myself breathless, exhausted and fatigued even after little exertion. We thought it was asthma and went to many physicians and ENT specialists. Finally a doctor noticed my hands were blue and questioned if I had any heart problems in past. He suggested going back to my cardiologist as he thought there might be something wrong with my heart.

My cardiologist asked for an immediate angiography after which there was a meeting of various cardiologist and my family.  They (doctors) predicted my longevity to be 2.5 years.  The repeated what was written on my reports, '' ITS TOO LATE, NO ELEMENT OF RECOVERY COULD BE FOUND.'' This very line literally reshaped the perception of my entire life.
I went to every possible place where the best doctors were available, but because there were and are no medications approved for children, I have been continually referred.  I have undergone various treatments, trials & experiments. Finally they found a medication regimen that worked, I was put on tracleer (Boonton), sildenafil (penegra), warfarin and lesoride (my current treatment, as well). While they said I would never survive without oxygen, I only use it at night.

My life was forever changed after diagnosis.  Since that day, I have always been treated as "Regina" by my loved ones, nobody ever dared to scold me. My parents and siblings were always gentle with me. I used to tell my friends I had asthma, as  I thought it would make sense to them.  I actually thought PH was another name for ''Heart asthma.'' However, my cardiologist scolded me and said, "If you knew the severity of what you have you would never call it asthma again! I can expect only an illiterate person to compare it to asthma."

What are you able to do that doctors said you couldn't? 

For the first five years, I was completely unaware of the fact that I had PH and that the doctors had thought I wouldn't live longer than 5 years. My doctors asked me to quit my studies after 11th grade.  I was doing pre-medical which they thought was too demanding and stressful. I argued and promised them I would avoid stress and I somehow passed it with A+. I was a good student and never ever thought, "Oh! I'm chronically ill.  I am about to die, why am I studying?"

However, I fell more severely ill and this time as the hole in my heart enlarged, it was decided my pre-med studies were a no-go. It was suggested I choose an easier course of study to have less impact on my health. I used to think about it for the days and nights and cry the whole night because I felt I wanted to do so much, to be so infused with all the energy to put into my work, but I was not able to, and that was really frustrating....

I had nothing else to do and an empty mind is a devils workshop. Pessimism started creeping up on me, and it felt there was no way to cast off melancholy. But, my parents helped me to choose a course of study, honors in English literature & linguistics. There have been many days of exacerbation, but I think to "give up" is accepting your defeat and that being a PHighter or warrior you are not supposed to give up.

They told me to avoid stairs and sports, I was actually supposed to limit my activities that demands more physical exertion... but, I am good at aerobics (an amazing choreographer, or so everyone says). My cardiologist says it’s not good for me, but whenever I listen to my favorite music I cannot help it, I consider it my exciting pulmonary rehab.

I am studying at a place far away far from home and living in hostel.  I have to do everything on my own and that's a big deal for me. I am able to do everything, but I need  "little breaks,” my friends call it "pause time". I think PH doesn't hinder you from living a normal life, we may just need to do it a little more "carefully." 

What is your dating life or marriage like with PH/Oxygen?

I was in 11th grade when I was being told by my doctor that "you are not supposed to get married." It was a great shock for me, I have never  considered myself as a patient, so I argued with my doctor and asked why.  He said "You cannot take care of yourself,  how can you manage a home of your own?”

After 2 years my cardiologist said the same thing but in a condescending way, he remarked "NO ONE ACCEPT AN OPEN HEART WITH OPEN HEART " ... a brutal statement indeed.  It served as an eye-opener for me, I couldn't argue this time because everything was so clear, tears blurred my vision because the initial acceptance of some facts is really a hard pill to swallow but once you make up your mind everything becomes easy.

It still resonates in my mind and hits me hard emotionally, but I am not convinced by this idea. My parents wanted to me to grow-up an independent and brave girl. People will definitely not be calling me a "Spinster." 

I am not saying a PHighter should or shouldn't get married, I am just trying to say this world is so cruel and being patient there is a possibility that you can be rejected or considered as a big "responsibility,” by a potential partner. Nearly all of the PH patients I know do marry, have kids (biological or adopted) and are living their lives happily because they are lucky ones to get their "rainbow" after the hurricane. But not everyone is lucky enough, I am an eternal optimist, I do believe in soul-mate theory.

But my focus and priority is my health so my ''BIG DAY'' would be the day I’ll get perfectly alright, yes that miracle day! I have seen many people posting in PH groups they are so anxious, perplexed & concerned about it (finding a partner), I would say "HAVE A FIRM FAITH" stay "STRONG" , KEEP YOUR SPIRITS HIGH , if luck favors you ! Great! If it doesn't that's not end of life...

One thing that my mother says when pessimism lapses on me "DON'T WORRY WHO KNOWS WHERE THE WIND MAY BLOW FOR MY GIRL."

Hardest part of life with PH?

The hardest part was the "acceptance" that I have a chronically terminal illness and I've a short time to live and being a kid this acceptance-phase prolonged  ... my doctor told me that only "will power '' will keep me alive. I've conceded to PH and every reality related to it with dignity....

Another hard part was when I couldn't study what I wanted to or I grew up dreaming of, because a person with right heart failure was not eligible.

I've had my days when I was really down and losing hope, but this was a greatest "learning-journey”. That pain must have taught me about the life, people & myself. It’s been a massive learning curve, so much about everything .I've experienced good things and bad things myself and that has taught me that the world is not all flowery, everybody doesn't want good for you ,friendship's changing equations, dynamics .I've also started to " grow-up" after fiercely resisting for many years.

Besides PH I have vigorously swollen "tonsils” for approx. 14 years and it hurts, in extreme condition it becomes red  ... My ENT specialist says I have needed surgery for the past 13 years, but due to anesthesia risk, they call me a HIGH RISK PATIENT and no one is ready to take that risk. That's why I am desperately waiting for a “miracle", seemingly all doors are closed for me but I have a blind faith in God that he’ll open all the doors at right time.

So, this was some of my story. In nutshell, I think my disease has helped me focus on what's important and let go of little things. I've made peace with the fact that there is a possibility I’ll die young, but HOPE is everything. Even healthy people aren't promised tomorrow. Respect the fact that you're a PHighter, it demands bravery as each day is fight and adventure,  pain demands to be felt, life isn't about how to survive the storm, but how to dance in rain so be thankful for what you have and you'll end up having more.

I literally count my own blessing and think that if the pain is so damn bigger, reward would be colossal. 

Stay tune for Part II of "A PH Story"

Friday, February 6, 2015

Living With A Rare Disease

By Kiara Tatum

Another year has come, and Rare Disease Day is on Saturday, February 28.  And the facts still remain that there are 30,000 PHighters living with PH in the United States, and I'm one of those PHighters. I know that there are others all around that are living with PH and other rare diseases, and we need to spread the word about PH.  There are many ways to get involved and share your story.

"Rare Disease Day was first observed in Europe in 2008.  It was established by the European Rare Disease Organization (EURODIS).  In 2009, EURODIS asked NORD (National Organization of Rare Diseases to be its partner in this initiative and to sponsor Rare Disease Day in the United States.... In 2014, more than 80 countries participated and, through social media, the awareness, and participation has an even broader reach.  Each year, Rare Disease Day is observed on the last day of February.  The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored." History of Rare Disease Day

Having a rare disease can be a very lonely and scary place where you feel no one understands what you're going through and you don't know what your day will be like.  It doesn't only affect the person with the disease, but it affects their family and friends.  I was diagnosed with PH in March, 2006, and I have been PHighting ever since that day.  But I didn't do it alone.  I have my family there to support me and care for me when I can't care for myself.  I have PHriends that I can call upon for support and understanding.  I have my friends that remind me of who I was before I had PH and that I'm still that girl.  So this Rare Disease Day, I'm going to celebrate, share my story, and bring awareness of PH to the community via social network.

PHA participates in Rare Disease Day.  Will you join us? Find out what you can do to get involved.  Let's share our stories, let's bring PH awareness to all around the world this year for Rare Disease Day. Rare Disease Day 2015 - PH

Friday, December 5, 2014

GenHope Spotlight: Syrena Arevalo

By: Tadesse Wondwosen, PHA Intern
The younger generation of PH patients continue to overcome hurdles and make strides towards improving their lives with PH. Syrena Arevalo shares her story on embracing her PH and using what motives her as fuel.
PHA: Please state your name and where you’re from? 
Syrena Arevalo: "My name is Syrena Arevalo and I'm a proud Tucsonan! I graduated from the University of Arizona in 2013 with a double Bachelor's Degree in History and Mexican American Studies."
PHA: When were you diagnosed with PH?
Syrena: "I was diagnosed with Pulmonary Hypertension in August of 2012 after being rushed to the Emergency Room with Right Side Heart Failure. At the time, I was at the beginning of my senior year in college and had so many plans lined up for the year. But as we all know, we never know what obstacles will be placed in our path. This was a time in my life that I wanted to focus on my career and what I wanted to do with my life. I wasn't ready to focus on the unknown."

PHA: What are some of the challenges (if any) that you face when keeping up with your PH?
Syrena: "When I went back to school, many things changed. Not only did I have to try to focus on my studies I had to be aware of doctor’s appointments, medications, and how my breathing was doing while going from building to building. There were times when I felt like I really wanted to give up my dreams and my studies because it was just so overwhelming. I felt very depressed for a very long time. But there was a part of me that didn't allow myself to give up because I wasn't doing this just for myself but for everyone that was there during the most trying period of my young life."

PHA: I hear that you are an artist and in a music band? Please tell me more about that?

Syrena: "Art and Music has always been a part of my life. I’ve been a musician for about 15 years and play in a local Mariachi group. It has always been a great escape for me and allowed me to express myself while bringing joy to those watching and listening. I have met so many amazing people and have had to opportunity to perform in many great venues. My greatest accomplishment occurred after I was diagnosed. November of 2012, only three months after diagnoses, I entered a vocal competition in Las Cruces, New Mexico. I went toe to toe with so many great performers and singers in the region who attended the Mariachi conference that year. One of them would eventually become my boyfriend. I felt so much support at the competition that it was overwhelming. I had brought with me periwinkle ribbons and info cards with me and those who competed as well as the Mariachis who backed me up were more than willing to wear them. Even though it was a tiny gesture, it meant the world to me. In the end, I won the competition and received a scholarship that would pay for a portion of my last semester of college."

"After my diagnoses, I took a semester off of school to adjust to the side effects and site changes that Remodulin had on me. During this time, I submerged myself in painting. Before this, I would often doodle and take art classes in High school here and there, but nothing really serious. It allowed me to put down on canvas what I was feeling and what I wanted for my future. I became better and better at acrylic painting and recently, I was invited to show my work at a local art show. I'm hoping to do more shows in the future and keep doing it just for fun!"
PHA: Syrena what would you say keeps you motivated in not having your PH define you?
Syrena: "Life motivates me. Why should I let this disease define who I am? There are so many things that I still want to do. To travel, start a family, begin a career. During these last two years, I've had so many people tell me that they are praying for me and my family members, many people I didn't even know. My friends and family have been the greatest cheerleaders that I could have asked for. They have motivated me to keep up with my health even though it can be difficult sometimes. Not giving up is the least I can do for them."
PHA: Lastly, what would your advice be in how the younger generation can live with PH and still be able to live normal lives?
Syrena: "I would be lying if I told you that it's going to be easy because it's not. But we all have to remember that we have PH, but PH doesn't have us. We have such a great support group of amazing young men and women who know just what we are going through within Generation Hope as well as in other communities on the web or in your local communities. Seek them if you have questions or concerns. We are all in this fight together.  Lastly, continue to do what you love to do.  It can make the tough times a little easier."      

Friday, November 7, 2014

PHight for PH......Karate Style!

By Tadesse Wondwosen, PHA Intern

    For our younger generation, living with Pulmonary Hypertension can present many challenges. Learning how to meet those challenges can be a drawn-out process. Faced with the normality of being young and aspiring, the younger PH population must also come to terms with being able to cope and manage their condition as well. We spoke with Shannon O’Donnell, an ambitious teen, as she shares her experience with fighting PH and living life to the fullest.

PHA: Could you please introduce yourself and briefly explain your connection with PH to our readers?

Shannon O' Donnell: "Hi everyone my name is Shannon O’Donnell and I’m a pulmonary hypertension patient. I’m nineteen and I’ve had PH for thirteen years. I’m on the crono five pump for remodulin and also many oral medications and oxygen at night. I’m currently a karate teacher for mentally challenged children and will be competing in my first tournament in two weeks!"

 PHA: From my understanding, you are still in college? What school do you attend and what is your focus?

Shannon: "I attend Bunker Hill Community College in Charlestown, Mass. My major is pediatric radiology and I’m currently in the prerequisite stage of the program."

PHA: Being in college, what are some of the challenges (if any) that you face when keeping up with your PH?

Shannon: "Well I’ve had some issues with some of my professors who don’t always understand why I miss class or leave early, even if I tell them ahead of time."

 PHA: Being away from home, is there still a network of support between your family and friends?

Shannon: "My school doesn’t have dorms so I still have the luxury of living at home with my family who are constantly caring for me. Most of my friends have gone off to further schools; however I still received their love and support as well."

 PHA: Shannon, what would you say keeps you motivated in not having your PH define you?

Shannon: "Darren Criss (Blaine from glee) has this saying “There is nothing more bad-ass than being yourself.” And there’s also a lyric from Demi Lovato’s song Fire Starter, “I'm a bad-ass jumping off the moving train I'm a Jane Bond, putting all them guys to shame I'm a wild card, and I'm gonna steal your game you better watch out.” I do what I want and listen to what my body tells me. I just try to be myself no matter what." 
PHA: And lastly- what would your advice be in how the younger generation can live with PH and still be able to live normal lives?

Shannon: "Listen to your body and live how you want while still respecting your parents. And it’s okay to be the smartest person in science class. Go to junior and senior prom don’t let PH run your live because you have one life to live so let it go and have fun."

Wednesday, November 5, 2014

Generation Hope #StillPHighting

by Generation Hope Advisory Board

November is a PH Awareness month, and many of you have been wearing awareness bracelets, t-shirts and hats, posting selfies, changing profile pics and names, and other things to bring awareness to PH. But we're still "PHighting", and we can't do it alone. We need help from Congress to join us in the "PHight".

Thursday, November 13th is National PH Advocacy Day. PH Association is hosting a Congressional Luncheon; however, if you're unable to attend, you can still get involved. Create a selfie-video and share it. Email your video to, and it will be posted to the PHA's YouTube Channel. Share the video with your family and friends and encourage them to make their own videos. And don't forget to add #PHAware when you post your video.

Then on November 13, post your selfie-video to your senators' and representatives' Facebook pages. Check out the video that Generation Hope Advisory Board created:

For more details and a guided script for your selfie-video visit

Monday, October 27, 2014

What's A Life Coach?

By Elisa Lipnick

Sometimes we can use a little extra help in our lives, especially when you are diagnosed with a chronic illness. Need help with finding what's next for you in life, defining your goals, getting a job, etc., a life coach can help you.

The definition of coaching per the International Coach Federation:
ICF defines coaching as partnering with clients in a thought-provoking and creative process that inspires them to maximize their personal and professional potential, which is particularly important in today’s uncertain and complex environment. Coaches honor the client as the expert in his or her life and work and believe every client is creative, resourceful and whole. Standing on this foundation, the coach's responsibility is to:
        Discover, clarify, and align with what the client wants to achieve
        Encourage client self-discovery
        Elicit client-generated solutions and strategies
        Hold the client responsible and accountable
This process helps clients dramatically improve their outlook on work and life, while improving their leadership skills and unlocking their potential.

FAQ’s for me as a Life & Wellness Coach:
What is coaching? Coaching is a partnership between coach and client. Through creative process, the coach will assist the client in getting from where they are to where they would like to be.
How is coaching beneficial? Coaching is beneficial for many reasons. Clients see many different benefits. Personal development is one of the biggest benefits. Clients go through the coaching process and discover many personal opportunities and aha moments.
Where do you meet your clients? I meet me clients be phone. We have one-hour sessions each week by phone.
Is these homework? Yes, if a client needs certain tools for their growth they will be provided with these tools.
Can I do group coaching? Group coaching is an option. We will have a conference call style coaching session with the clients who are interested I group coaching.
What does the process look like? This is a creative process in which the client has full control of the direction of the coaching. I will check in with the client and make sure we stay on track with what is on the client’s agenda.
Will you give me advice? My job is not to give advice; this is a discovery process for the client.
Is life coaching similar to therapy? No, coaching focuses on the present and how to move forward into your future.
How long does it take? This depends on the client, but most coaching relationships last six months to a year.
What is the client’s responsibility? To call in, be present, and do the work.
How do you chose the right coach? Make sure you find a coach that you feel comfortable with. That is very important. Not every coach will work for every person.
Is there a time commitment? One hour a week every week.
Here is a review from a former client Erica Cenci:
Working with Elisa really helped me gain a better understanding of myself. Through our various sessions, Elisa made me feel safe, and allowed me the opportunity to open up and be completely honest with inner-self — something I have struggled with in the past. Her questions were thought provoking and brought me to a place of greater awareness and peace. Through her coaching, I was challenged and stretched to new levels, moving me closer toward my goals and desires in life. I would recommend Elisa to anyone looking to get greater clarity, understanding and movement toward their goals in life.