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."      

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.

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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."

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 AngeliaD@phassociation.org, 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 PHAssociation.org/stillphighting

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:

http://www.coachfederation.org/need/landing.cfm?ItemNumber=978&navItemNumber=567

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.

The Long Road to Her

By Colleen Brunetti

This blog is probably one of the most raw things I have written to date. It contains thoughts and experiences I had previously chosen to keep private (in fact much of it was written a year ago and never published) - odd for someone like me who has otherwise made a decision to live this diagnosis out loud in an attempt to change its course. But now is the time to share. My prayer for you if you are living some of these same struggles is that you find some hope in our story.
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My journey to her began at age 19. It was the year I took the job as a nanny for a little girl newly adopted from China. I clearly remember rocking her to sleep in my arms, gazing down at that gorgeous perfect little face, and having the wind sucked out of me. What if her parents had not cared enough to go and get her? What if she had stayed in a Chinese orphanage? What hell of a life would she have lived? And here she was, safe in their home, safe in my arms, the world at her feet. I vowed then that I too would make the difference in a little life, and adopt.

I knew the child I got would be a girl... Altruistically speaking, girls have a pretty tough time in much of the world and I wanted to make a difference for one. Totally selfishly, I wanted to raise a ballet dancer, like me, someone to share that with (for as long as she would tolerate it before asserting independence, of course!)

Eight years ago I had another brush with adoption that only further solidified these feelings. I was teaching special education and I had twin girls from India on my case load. They were the result of a botched late-term abortion and had survived, eventually being adopted by an American couple. Again, I found myself looking at them and thinking, "What if..."

Fast forward many years, and I have an incredible biological son. A son who is my own miracle - as we now know I shouldn't have survived the pregnancy because I probably had PH already, and we just didn't know it.

When you have PH you can't get pregnant. Or, at least, you really really shouldn't. This is something you're told pretty much upon diagnosis. When I was told, it didn't faze me. My son was an infant at the time, and pregnancy was not something I was too big of a fan of the first time around. Since I already knew I wanted to adopt, I figured that would be our route, and that was totally cool.

Except, for a long time it wasn't our route at all. I was so busy chasing a toddler and trying to get better and trying to be self-employed, and my husband always works so hard, and our lives were just full. Although we batted the idea of adoption around many times, the answer always seemed to be "Not now." And that was fine.

But then a little over a year ago my damn biological clock started ticking...and chiming... and the gong started going off... and I couldn't make it stop. I wanted that baby.

After long heart-to-hearts with my husband, it was clear he just wasn't ready for adoption. And I couldn't blame him. It's not like other times when we've disagreed and my nose is all out of joint because he doesn't see it my way (come on, you know you all get like that). This time, he had real fears about the future. How the financial burden of supporting our family is by and large on him.  And worse, he had fears about being a single parent some day, if PH took the ultimate toll. These aren't fears we face head on too often. In fact, we never had before. We've chosen to live with the positive and not think that way. But when we're choosing to discuss a very purposeful choice for the long-term future, and involve the life of a child, we kind of have to wrestle with that dark side too.

For the sake of my marriage, I vowed to force this clock away. MAKE it go away. Focus on my son - whom I love and adore and is so so so enough in all possible ways. Basically, I tried to beat my biology. And pretend I was winning. And I did okay... for a while.

Then in the spring of 2013 I attended a dance recital. And I sat there and looked at the moms around me smiling with so much pride for their daughters on stage and I just lost it. I sat in the dark auditorium and cried silently. That should have been me. PH robbed that from me.

The grief followed me in the months ahead, although I tried to keep it in. Baby showers were torture. My sister got pregnant and I cried my way through shopping for the niece whose arrival I was over the moon excited for. And finally it was clear that I was going to have to either get some serious professional help in letting this all go, or re-visit the decision.

I tentatively broached the topic with my husband. And... he said yes. Why the timing is right now, I just don't know (neither does he). But my health is stable (thriving, even), all of my doctors are 100% in support of this decision, my business is growing, things have changed... and now we're ready as a couple and as a family.

Then it was just down to deciding on how to get her. International adoption held little draw now. I wasn't that interested in having to travel overseas with PH to go and collect her. Domestic adoption sure sounded good, but the tens of thousands of dollars it costs seriously deterred us. Surrogacy was also on the table... but I ended up deciding that if we really were going to do this, I needed to stay true to my original intent all those years ago and help a child in need.

And so, we were left with the foster system. We have chosen to adopt through social services and take a child whose parents can not care for her. It does not escape me that for us to get our daughter, someone else will loose theirs.

This path is scary. In fact, I should probably be much more jittery about it than I am. The child may come to us drug exposed, abused, neglected... who knows. We could be placed with a child, only to have the arrangement fall through because the system deems reunification with the birth family or extended family is better. But the truth is, the road to her has been so very long, sometimes so very hard, and now is the time.

It is going to be fine.

I have total peace about it. A peace that surpasses understanding, and I'm pretty content with that.

We're almost done with all of our DCF licensure requirements.

Now, all we have to do is wait for her.

The Long Road to Her was originally posted on Colleen's blog on July 2.  Follow Colleen's blog, PH and "The New Normal"

I Am Not My Disease!

By Kiara Tatum

Kiara and niece being silly

I was reading a youth worker journal article, and the topic was identity.  I haven’t seen it yet, but the article was referring to the movie, “Fault in Our Stars.” The movie follows the growing friendship of Hazel, who is diagnosed with cancer, who meets Augustus, also diagnosed with cancer, at a support group meeting.  Augustus asks Hazel, “So what’s your story?”  She proceeds to tell him about when she was diagnose with her cancer.  But he interrupts her and says, “No, not your cancer story, but your real story.” 

That statement made me think about how I defined myself since diagnosed with PH eight years ago.  I was someone before I was sick, and I built friendships, had hobbies, and participated in activities that didn’t revolve around PH.  Sometimes we are so focused on our PH diagnosis and that PH journey that we forget that we are much more than that.  How I identify myself is important when sharing my story with others.  Do I start with I was diagnosed with PH in March 2006 after years of knowing that something was wrong with me.  Or do I start with: My name is Kiara, and I like to be silly and have fun.  I love to watch the ID Channel, sing songs out of nowhere, laugh and smile a lot.  I love the Lord because He loves me and He has brought me through such hard times such as these that I want to show that love to others, so they too will know who the Lord is through my actions which is easier said than done. 

So you see I’m more than just a girl diagnosed with PH at the age of 26 who had to leave her job because she wasn’t able to continue to work.  I’m more than that, and so are you.  You are more than a diagnosis that your doctor gave you, and you are more than this disease that wants to destroy every part of you.  We are PHighters, we are survivors, we are warriors, and we are strong.  And we should not let ourselves be defined by our disease any more. 

I love to listen to music from alternative to country to pop to r&b; I love to laugh and smile; I love to spend time with my family; I’m an aunt, I’m a sister, and I’m a daughter.  I sometimes get mad for no other reason than I woke up that way and will probably stay that way for a few hours; don’t take it personal.  I’m terrified of spiders, and I love to work with youth.  So that’s a little bit about me. So what’s your story? Not your PH story, but your real story?

Dealing with changes in your health

Guest Blog Post! By Sara Hunt 

Like sufferers of most chronic illnesses, PH patients have to deal not only with the symptoms and impact of PH itself but also with sudden changes in our health and lifestyles. Booking a holiday a year in advance feels like tempting fate. Life is suddenly so much more unpredictable and fragile than it was pre-diagnosis.

My health has been particularly unpredictable. Changes in my health have happened practically overnight on more than one occasion. Three years ago a lung haemorrhage caused a dramatic increase in my pulmonary pressures and I went from perusing a promising career as a dancer to using a wheelchair for any kind of outing. Then, February this year, I simply woke up with worsening breathlessness that never got better. I'm now on the transplant list.

There's something about breathlessness and fatigue that once you settle into a routine of avoiding the amount of exercise that makes you feel unwell, you don't really notice improvements in your health until you're forced to do something you don't usually do and find to your surprise that you can do it without extreme breathlessness or dizziness. Worsening breathlessness is easier to notice and you suddenly have to make changes to the way you live to deal with them. Of course it's always important to do as much as you can but PH symptoms are so unpleasant it becomes impossible to push beyond a certain point. You have to make changes and this can feel like your disease is controlling your life.

Given the increasing unpredictability of my life I feel I might be able to offer some advice here.

1. Stop comparing your life to the lives of those around you.
Everyone is guilty of doing this. We crave constant reassurance that our lives are good. Imagine a healthy person exactly how they are now, but everyone else in the world is Ussain Bolt. Their health and lifestyle would be exactly the same as it is now, it's only in comparison to all the Ussain Bolts that makes it seem mediocre. It's the old the grass is always greener on the other side. But if you constantly compare your life to others you'll forget to enjoy it. Do what you can, there are always things you can do, no matter how ill you are. 

2. Don't compare your health now to your health in the past.
On a similar note, it's important not to lament the past. Treasure the good memories rather than becoming bitter about them. Make good memories for the future, you'll probably need them!

3. Find ways of making things feel normal.
Although your life is going to be affected by your health, it doesn't have to control it. Making small changes and making an effort to go out and do the things you used to is important. From simply having a evening meal with your friends instead of a late night out to going to see a show instead of performing in one yourself.

4. Learn to adapt. It's easier said than done but humans are designed to adapt to change. It's much more nurture that gets us stuck in our ways rather than nature. We are designed to survive and do it to the best of our ability. It's not easy but it's completely possible and your mind and body is designed to do it well.

5. Help yourself feel in control.
We are all in control of our own lives and having a disease doesn't mean you're not. Making the effort to change the way you do things rather than cutting them out of your life completely is how I maintain some kind of control over my life. There are things you can't change but there are lots of things you can, concentrate on those. 

6. Get out and try something new!
So you can't do some of the things you used to but there are plenty of new things to enjoy. Go to a food festival, check out the local book stores and go to a reading of an author you've never heard of, go to a comedy show, visit the local zoo, do something you'd never have thought of doing before and take a good friend along with you. It's easy to get stuck in a routine but new things and regular outings are brilliant for maintaining your sanity. And spending time with people you love is an extra special bonus.

Hopefully these were useful. You're probably doing all these things already but this post should give you fresh drive to this summer and you can never have too much of that!

Feel free to post any advice you have for dealing with changes in your health or even dealing with a new diagnosis. 

For more blog post by Sara visit her site at http://thegirlwithheartdisease.blogspot.com/2014/03/big-decisions.html

Here Comes the Sun

By Marissa Barnes

As we enter into the warm summer months, I wanted to introduce myself as PHA’s summer intern in the Patient and Caregiver Services branch. The summer time is my first and foremost favorite time of the year, not just because I break from school, but because every day I feel rejuvenated by the warm air and happier with the sun shining.  A few years ago I read this quote and since has been my life motto, to

“Always bring your own sunshine.”

 I know for some, being in the sun can cause irritation and the time spent under the sun’s rays for others their summer might not even be all that sunny, for me, living in D.C. we have thunderstorms lined up every day of the week. Regardless of the weather, I try to find a little bit of sunshine in everything I do. I had made a post on the Facebook group asking what some of your summer plans are to be this summer, whether you are vacationing, spending time with friends, involving yourself in certain camps or groups, etc.

 Kevin Mayhood – Paskawych shares his summer plans saying, “I have a slogan and its ‘if I can do it, you can do it’ and I keep trying to push myself to attempt new things, despite this. I am 32, I was diagnosed in 2012, and I have IPAH currently, although there is a thought that we may have an idea as to a potential associative disease. I am spending my summer in my hometown of Marietta, Ohio, but it doesn't mean I am not excited. When I was going through my diagnostic process, I needed something to keep my mind off of everything, so I jumped into an idea a friend, and fellow theatre professional, had about starting a professional summer theatre company in Marietta. So, we formed a group, and over the last two years built up what we needed to pull it off”. (Mayhood-Paskawych).

Kia Thompson-Allen who is 39 and was diagnosed with PAH in 2007, tells us this summer she will be, “keeping my 8 year old busy, taking him to St. Louis to six flags and the zoo there”. Kia recommends staying in the water parks to stay cool, plus drinking icy beverages and finding shade when you can.  Kia explains, “you know it's hard on us PH'ers in the heat, plus my son being a severe asthmatic heat isn't good, so most activities we plan are indoors: library, Chuck E. Cheese, and an indoor trampoline facility; all those places are air conditioned :) and ways to  have fun and stay cool for us”!

Kristine and family at Detroit Zoo

Kristine Green is 35 and was diagnosed with idiopathic pulmonary arterial hypertension in July 2011.  She says, “This summer, I am ALL about family time! I am blessed to stay home with my four year old son. So far, we have gone to Movies Under the Stars- where you watch a movie outside up on the mountain to support our local firefighters, library reading programs, both of the "splash pads" in our town and played a lot in our yard. I am most excited to go camping on the Umcompagre Platuea and for a rafting trip on the Colorado River. Too cool off, we load up our three pups and head to the river or swimming pool (minus the dogs)! We like to make our own Popsicles or freeze fruit to munch on to stay cool too. My son and I are supposed to visit family/friends in Michigan (where I am from) for 17 days- visiting numerous cities while there. However, I am not sure about going right now since I am experiencing troublesome side effects from meds. If we do go, we'll go to Lake Michigan, the Detroit Zoo, festivals and maybe a Tiger's game! I will need a vacation from vacation after that! I like a lot about summer, but harvesting fresh fruits and veggies from our garden, camping and spending time with friends are probably my favorites”.

We love hearing from all of you and your plans for this season. Sometimes the heat can be intimidating to get outside and have fun, but there are many ways to stay cool and still enjoy yourself. I hope you all can find a little bit of sunshine in each part of your day

Generation Hope Goes to Indianapolis

by Kiara Tatum

It's almost time... conference starts on Friday, June 20.  And as people are traveling to Indianapolis for this year's conference, I see many postings from Generation Hope about their travels on Facebook. I'm very excited to meet up with PHriends that I haven't seen in two years, meet new PHriends, and see PHriends in person for the first time.  I"m a bit nervous about flying again.  My family isn't able to attend with me to conference, so I'll be traveling alone.  So as we all check in to the conference over the next days, don't forget review your conference program book.  There are many sessions centered around young adults that we hope you will attend.  There's also a special meet up for Generation Hope.   Generation Hope After Dark will be held on Friday, June 20, 8:30pm.  I hope you'll make it out. Previous Generation Hope After Dark in Florida was a lot of fun!  Brittany Riggins wrote about Generation Hope After 2012 in a previous posting.  This year we're adding a little game which you can win prizes, so you don't want to miss this one.  Join us for an evening of fun!!!

Safe travels to everyone!

Be Like a Kangaroo!

By Kiara Tatum

A few days ago, I was reading my daily devotional, and it was talking about how kangaroos -- due to their shape of bodies and large tails -- cannot walk or bounce backwards.  However, they bounce in forward movements very easily.  And I thought about how I move in my life, and how I can get stuck in certain places.  But the kangaroo can’t go backwards, and they move forward as part of their nature; I want to be like a kangaroo.  I want to always be moving forward.

This sounds easier for a kangaroo to do; since, it’s their animal nature, but it’s a lot harder for people, especially those with a chronic illness like PH to follow this concept.  To add this concept as part of our human nature; it seems almost unnatural.  As a PH patient, I’m always having thoughts about why did I get PH; what if I didn’t gain so much weight, would I have gotten PH; if my pediatrician saw the whole in my heart when I was younger, would I have PH now; if I didn’t decide to go back to work would I be dealing with Social Security complications; and so on and so on.  I don’t want to stay stuck on those things of the past because it's a lonely, dark, sad place to stay.  As I read in the devotional I can’t really live there, and I don’t want my PHriends to live in the past either.  I had to learn and I’m still learning these lessons in life:

1. Leave the past behind you
2. Reach for things ahead of you
3. Think positively 
4. Be hopeful
5. And know you’re never alone

I will be like a kangaroo; always moving forward.  I will learn from my past, but leave it behind me, so that I can live a more fulfilled, joyous life.

PH Goes To College: Part 2

By Becca Atherton

When I was just a few months old, my parents were told that I had only a 13% chance of living to the age of five. High school, Prom, getting my license and graduating high school were experienced my family never thought I’d get to experience – let alone college! But here I am today, twenty-one going to college, majoring in Psychology with a minor in Family/Marriage counseling. While going to college is an amazing experience that so many of us with PH thought we’d never get to have, there are some things about the experience that will be different for us than it would other college students.

The first PH conference I went to, I was just sixteen years old and I sat in on the ‘PH Goes to College’ panel, wanting to get some tips on how to deal with the stress of college and my disease at the same time. The students on that panel had some wonderful advice such as choosing classes later in the day so you’re not waking up super early, get in contact with disability services, e-mail your teachers before you meet them to tell them about yourself and not over-scheduling yourself when it comes to classes and after school activities. The only thing I wished had been different about the panel was their array of colleges. Everyone on that panel chose to go to a four year university – some even lived in dorms!

Seeing all these young adults up there, some going to Berkley and some even going to college out of state – it gave me unrealistic expectations for myself. I felt that if I went to community college that I wouldn’t be doing enough, that I wouldn’t be good enough. If they can go to a four year with PH, why can’t I?

PH and its symptoms are different from person to person. The amount of stress someone’s body can take is going to be different than yours. I had to remind myself that, and tell myself that at least I was going to college because there are some PH patients who can’t even get out of bed. So if you’re sitting there, thinking about going to college but not sure if you can handle the huge campus of a four year, I want you to know that community college is an option and it does not make you any less of a college student if you go.

Some of the best things about community colleges are its smaller campuses; so your classes won’t be too spread apart and the class sizes are smaller so your teacher will actually know you. When you get into a class of 500, the teacher isn’t going to know you or your health, which means, if you miss a day and need notes from that day, they probably won’t even realize you were gone. I was worried about dorm rooms in college. What if my roommates are up too late? Staying up late and not getting enough sleep has a tendency to put me in a tired mess when it comes to my PH.  What if my dorm mates got sick? I shouldn’t be around that. Staying at home was the option I chose and I don’t regret it for a minute. So I don’t get the ‘dorm experience’, I can just have my friends sleep over on the weekends if I want that.

One thing I noticed was how much cheaper it was than a four year. Sadly due to medical issues, I had to withdraw from classes last semester. Imagine paying all this money and then not even being able to finish the course? I lost money last semester, but not nearly as much as I could’ve.

Because my health was still a problem by the time this semester rolled around, I am taking this semester off and it kills me.  College makes me feel normal. I’d get up in the morning, get dressed and go to classes, hang out after school, come home and do homework. It gave me something to do and it made me feel like I was actually doing something with this life that my parents and I have fought so hard for. Sitting at home all day, not only is it boring but it makes me feel like I’m wasting the precious time that I have. I know that its not my fault and I know that it doesn’t make me some lazy person but I hate it when people ask me how classes are going because I have to answer with, “Oh I’m taking a semester off.” And I worry that I sound like one of those college kids who just got lazy or flunked out so they aren’t going to school this semester. If you are in this situation too, we have to remind ourselves that we are doing the best that we can. The standards for us are going to be a little different and there are going to be times when we have take breaks from college. Yes it means getting our degree later, but at least we are working towards it.

College can be a bit crazy and stressful, but it can also be so much fun. I’ve met a lot of great an amazing people through college and I’ve learned so much. I’ve had amazing experiences and gotten involved in a great club after school. (I did not do more than one club at a time due to stress and activity level). Just take it slow, remember that you don’t have to get everything done at once and that you’re on the right track.

Get Ready For Rare Disease Day!

By Kimberly Smith, PHA Intern

February 28^th is Rare Disease Day and it’s time to celebrate! Rare Disease Day was established in 2008 by EURODIS (Rare Disease Europe) and its Council of National Alliances, and is celebrated annually on the last day of February. Rare Disease Day was created to raise awareness and advocate for rare diseases that many people are unaware of, but that so many in the world are affected by. Events are held in countries throughout the world, from here in the United States to Spain, Japan, and everywhere in between! Many people use this day as an opportunity to raise their voices about rare disease and go to their local politicians and advocate, and events are happening at State Houses across the country, sponsored by the National Organization for Rare Disorders (NORD).

The Global Genes Project, a non-profit organization dedicated to rare and genetic diseases, is also celebrating Rare Disease Day with various events and activities dedicated to raising awareness. Their “Wear That You Care” campaign allows participants to order, for a small donation, a “Genes Ribbon” to wear along with their favorite pair of jeans to show their support and raise awareness for rare and genetic diseases. Click to learn more about the Global Genes Project and their Rare Disease Day events.

There are so many ways you can celebrate Rare Disease Day! Here’s a few ways some members of the PHA Community celebrated last year:

• Last year on Rare Disease Day Colleen went in for a haircut and decided to donate 12 inches of her hair to Locks of Love! She had planned on donating it sometime in the future, and after a little encouragement from her hairdresser, she decided it would be a great way to mark the day.  
• Rachel made cupcakes with names of rare diseases on them to celebrate last year. Delicious!

How will you celebrate Rare Disease Day this year? Visit www.rarediseaseday.org to find events happening near you! 

Day of Love!

By Kiara Tatum

It’s Valentine’s Day and everyone, whether you are anti-Valentine’s Day or pro Valentine’s Day, will be celebrating somehow.  This can be hard time for those with PH and single because it’s not so easy to feel free to love someone when you are coping with PH.  And those who are in a relationship may not have enough money to afford a gift for their love one.  PH is a rather expensive illness to treat.  So have three tips for the singles and for the couples.

Single Phriends:

1. Go out with your single friends.  Maybe go bowling or catch a movie together.  Celebrate being single with other singles.
2. Stay home with your family.  Sometimes going out on Valentine’s Day is too much because there is red hearts, roses and chocolate everywhere you turn.  So just hang out with family or invite some single friends over to spend time with them.
3. Take a chance and go out on a blind date.  Use those newest dating apps and find someone who’s single and meet up.  You never know, the day of Love can be a great day to find your true match.

Valentine’s on a Budget:

1. Have a picnic dinner indoors.  Make a wonderful dinner for you and your love one.  Spread out that picnic blanket on the floor and sit on the blanket and share a cooked meal together.
2. Write a love poem or love letter to that special someone.  Sharing your thoughts and feelings this special day will make that someone special fall in love all over again with you.
3. Take your love one to McDonald’s.  Seriously, I hear that McDonald’s is setting up Valentine’s Day seating with candlelight dinners.  That’s sure to fit into anyone’s budget this Valentine’s Day.

These are just some of my thoughts to share with the singles and the couples this Valentine’s Day. You can find other ideas all over the Internet. Everyone have a wonderful day full of love from friends and family.

I Can't Believe They Said That!

I Can’t Believe They Said That!!!

From one patient to another, we have all had that moment when we think to ourselves, “I can’t believe they said that!”  Sometimes it is a stranger at the grocery store, a coworker or the naïve family member.  Normally the closer the person is to you the more it hurts and the longer it consumes your thoughts.  It is very difficult for others to understand what life is like living with a serious medical condition.  The purpose of this post is for you to share with those most involved in your life.  My hope is that it will be a gentle guide to help the communication between you and them.  The following guidelines pertain specifically to Pulmonary Arterial Hypertension (PAH).

What NOT to say…

• “You don’t look sick.”  Just because we do not look sick does not mean that we are not feeling poor.  This disease is a microscopic internal struggle between the heart and lungs.  PAH affects millions of tiny blood vessels that branch off from the larger pulmonary artery that is connected to the heart.  Every breath and heartbeat requires more energy for a PAH patient than for a healthy person. 

• “It’s not that bad.”  A patient struggles regularly to perform daily tasks that would otherwise be simple.  This is incredibly frustrating and an emotional battle.  We struggle with acceptance of the limitations that are placed on us by this disease.  We struggle with the social embarrassments of needing to take breaks because of lightheadedness or turning blue when performing a task that requires an increase in oxygen.  It is discouraging to be meet with non-sympathetic statements. 

• “I know how you feel.”  You do not know how we feel so please don’t say so.  Our high blood pressure feels very different than the more common type of high blood pressure.  We experience side effects from medications you have never taken.  Multiple hospital stays, doctor visits and medical tests are physically draining.  The way this disease affects us is individualized and it is impossible for you to know how we feel.

What to say…

•            “I believe that you are sick.”  Instead of telling someone that they don’t look sick, you should believe them.  The way PAH affects the individual fluctuates day to day.  On the worse days it is nicest to know that you’re believable.  Denial of the impact of this disease is only harmful.  Conveying that you believe the patient is sick allows us to feel that you are willing to fight this with us.
•            “I’m sorry this is something you are going through.”  Sympathy: the perception, understanding, and reaction to the distress or need of another human being.  Telling us “It’s not that bad” while meant to be encouraging is actually naive.  This disease is bad, life or death bad.  To be encouraging say, “I’m sorry this is something you are going through.”  It conveys sympathy to our situation.  It is encouraging to know that our pain saddens you. 
•          “Help me understand.”  While you may not know how the patient feels, you are able to be more supportive if you gain understanding of PAH.  Listen to us talk about how diagnosis changed our life.  Learn about the science of the disease.  And one of the best things you can do to understand is attend a patient support group meeting.  A few of my friends went with me in college and I clearly remember how enlightening it was for them and how supported I felt.

This is just the tip of the iceberg of what not to say and what to say to a PAH patient.  Please add your own in the comment section below.  Remember share this article with your family and friends!