PH Awareness 2015

By Kiara Tatum

I can’t believe another year has passed by, and PH Awareness Month is here once again.  During the month of November, there are many events, fundraisers, support group meetings, advocacy action, and other activities to spread PH awareness.  This is also a great time for young adults diagnosed with PH to spread as much PH awareness as we can during the month.  I know it can be difficult getting involved in attending events or hosting a fundraiser, but I’m going to share some great ways to spread PH awareness using social media.  

One social media event that goes on until November 30 is #Heart2CurePH.  It's simply printing the "Please Co-Sponsor H.R. 3520 sign" and taking a selfie or a usie with friends and family and posting it on your Facebook or Twitter page with the #Heart2CurePH.  Don't forget to post on your Members of Congress pages as well to see if they have the #Heart2CurePH by sponsoring the Pulmonary Hypertension Diagnosis and Research Act.  For more information go to Heart2CurePH Photo Campaign on Facebook.  

#Heart2CurePH Campaign is part of the 2015 National PH Advocacy Day on Thursday, November 19.  There are three ways to get involved including the #Heart2CurePH, giving your Members of Congress a call, and visiting your local legislature office.  Find out more information of Periwinkle For A Cure: National Advocacy Day here.  We are coloring the world periwinkle this month.  So change your profile pics and cover pages on Facebook to PH Awareness themes.  Can find them on the Pulmonary Hypertension Association Facebook page.

Now ladies, and the fellas too, this one is a good one.  Get out your periwinkle color nail polish and paint your nails.  It's time for the #ManiUpForACure Campaign.  Take a pic of your nails and post on social media with the #ManiUpForACure.  No periwinkle nail polish, no problem.  When you donate $20 or more to PHAware, you will be sent a bottle of nail polish, so that you can participate in this campaign.

Now another idea which is just so inspiring and amazing, I can't wait to do create mine, is record a note card story.  It'll allow you to share your PH journey to others on social media.  You can post on YouTube Channel and/or your Facebook Page.  It's a great way to share your story and spread PH awareness. Check out Shannon O'donnell's PH story.

These are just a few ways you can get involved in spreading PH Awareness to family, friends, and your community.  Do one, two or try them all.  For more details and other ideas you can always visit PH Association Awareness page. Do something this month to spread PH Awareness!

Walk Across America Continues...Pacing Parson

Have you heard the story of Don Stevenson aka Pacing Parson.  Don Stevenson, who is 79 years old retired minister and former U.S. Marine, is walking across America to raise awareness and money for Pulmonary Hypertension (PHA).  Stevenson walks 25-30 miles each day, from Auburn, Washington to Silver Spring, Maryland.  He takes Sundays off to rest.

Stevenson was compelled to support PHA after visiting Betty Mayfield, a fellow church member in the hospital before she died of this disease.  This walk honors Betty Mayfield, along with Dorothy Fitch, a close friend who is struggling with PH, and a 14-year-old Cullen Steele, a local (Kent, Wash.) PH patient who recently underwent a heart and lung transplant.

Stevenson's walk is one of PHA's Team O2 breathe events, where communities and individuals raise money for PHA.  PHA is chronicling Stevenson's journey on social media and inviting people to walk with him and capture the experience via photos and short video clips.

Don Stevenson

It's time for Gen Hope to get behind Pacing Parson and help raise funds for PHA.  Go to Generation Hope's Fundraising Page and make a donation.  Generation Hope is trying to reach a goal of $1,000.  A contribution of $5 or more can go a long way.  It's the goal to reach this amount by Mid-September when Stevenson will reach PHA's Maryland headquarters.  Let's join the cause!!!

Learn more about #PacingParsonPHA at The Pacing Parson Walks Across America for PHA

Confessions of a Once Reluctant Fundraiser

Reprint from PathLight Winter 2015

Colleen with a friend at her
"Shake It For PH" Zumbathon

There was a time when I didn’t like fundraising. Don’t get me wrong, I’d gladly throw some money behind a cause or person I supported, but actually doing fundraising for pulmonary hypertension, as in, create an event, solicit friends and family, and pull it all off?

No thanks.

My reasons were pretty clear at the time. I felt that if I were to fundraise for the cause, I was somehow fundraising for myself. And I wasn’t comfortable with that at all. To do so would mean both admitting how sick I was and asking for help, and I didn’t like the thought of either. These feelings guided me for a while. However, as I got more involved in the cause, the more I came to realize just how crucial the funding part was. My stance has long been this: “If I have the right to hope fora cure, I have to take an active part in doing things that get us there.”

Well, what gets us to a cure is research dollars (and advocacy!). But someone has to provide those dollars, and I began to see that the push for that had to be led by someone like me — the one whose hopes rested on the cure those funds could bring. Maybe that’s you, too.

So, I tentatively dipped my toe into fundraising.  I’m a part of PHA’s Generation Hope, PHA’s group for patients in their late teens, 20s and 30s, and a few of us banded together to help raise unity funds for the “Path to a Cure” climb, where two doctors and a physician assistant were climbing Mt. Kilimanjaro to raise money and awareness for PH.

That went pretty well! So then I started thinking about an event. I decided I needed to have a shift in perspective. Instead of thinking about asking for money, I decided to invite people to a party. A good party is something I can handle! So, I created the first-ever Zumbathon for the cause, dubbing it, “Shake It for PH.” That was so much fun I did it again a second year.

In 2013 a new opportunity arose. Team PHenomenal Hope was preparing for Race Across America and two patients, Diane Ramirez and Janet Mabe, committed to walking a combined 100 miles to raise awareness and unity funds for the event, a goal which they actually far surpassed! Their actions inspired me to do my own athletic event. A friend and I participated in a Warrior Dash and raised sponsorships through that.

All in all, I’ve raised almost $14,000 for PHA. Every event was fun, and I’d do them all again. Not so bad for someone who once publicly declared that fundraising was not for her!

Now I have my sights set on something bigger. This year, PHA launched the PH Care Centers, an initiative to establish a program for accreditation of centers with special expertise in PH, and to raise the overall quality of care and outcomes in patients. With this initiative comes the goal of a patient registry. I believe that achieving this goal could revolutionize how medical providers and researchers approach PH, but I also know it will take a very strong financial platform to make it happen.

On May 1, 2015, Hartford, Conn., is going to host a fundraiser for the registry unlike any you’ve seen before. We are going to throw one big party (you see my theme here), and take 254 people to see Jay Leno live. I’m working with an amazing team, and I do believe we can pull off something great. Stay tuned! And be it big or small, be thinking about how you, too, can get in on the cause — a cure for pulmonary hypertension. As I’ve learned from starting small and slowly growing my fundraising efforts, every little bit truly does help.

By Colleen Brunetti, PH patient; Member, PHA Board of Trustees; Generation Hope Advisory Board Member

If you would like to join Colleen and jump into the world of special event fundraising, contact PHA’s special events team at Events@PHAssociation.org or 301-565-3004 x742.

A PH Story Continued

Part 2 by Eye Shaa Malik

A PH Story Part I

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.

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"

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

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."