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."

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.

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

Need A Pick-Me-Up

By Kiara Tatum

I don’t know about you, but I have been having an extra hard time these last few weeks.  And all of sudden last week it hit me that it was my good friend’s birthday.  She died from PH last year in October.  She was my first friend that I had gotten to know, and we became good friends and had more in common than just PH.  We talked about everything and even cried together.  It just been sad to not be able to do that with her anymore.  I have been in a fog for almost an entire year and not really coping well with her death because I tried to cover it up.  So I think I just needed to let the hurt, the anger and sadness out.  I needed a pick-me-up.

But I think as we are ending another year with holidays and celebrations, we are all going to be cycling with feelings of sadness and anger which we are going to need some fast acting pick me ups to get us through these months ahead.  I have been finding that journaling is my go to pick me up, but sometimes even journaling is hard for me to be honest with my words.  So I've been allowing music to do my feeling for me.  Let music—Pop, Country, R&B, Rap, Jazz, Classical, Rock, and any genre—be your voice and just let go!

Music heals the soul.  One of my favorite songs on my playlist that always helps me fight another day against PH and have hope is Roar by Katy Perry.  It came in handy when I was just feeling down about the unknown.

I got the eye of the tiger, the fire

Dancing through the fire

'Cause I am a champion

And you're gonna hear me roar

Louder, louder than a lion

'Cause I am champion

And you're gonna hear me roar

You have to fight this illness with faith, hope, and music.  Because this illness has a way of bringing you to places you don't want to go to, it can be difficult to find your way back. So let the music play on!

Depression and PH

Depression is a battle many people with Pulmonary Hypertension and other chronic illnesses have to face from time to time.  Living with chronic medical conditions puts strain on a person not only physically, but emotionally, spiritually, socially, financially, and cognitively. This can be very overwhelming if not addressed.

Find the Source

First, we must step back and as clearly as possible examine what could be causing our depression.  What is the root of our emotional pain?  Medications and their side effects can cause depression.  There are some medicines that cause pain that could be making the depression set in or the medication itself causing emotional imbalances.  I like to not only read the side effects of new medications from the pharmacy, but also look up the medicine online.  My favorite website is www.webmd.com , but keep in mind everything you read online (even a reputable source) may have misleading/scary information.  Also, discuss what you are feeling to your doctor.  He/She may know the source and can help you better cope with the cause of your depression, whether it is medication side effects, pain management or another source.

Reach Out and Talk It Out

When I was depressed I wanted to just stay in bed with my head covered and block the whole world out.  Some days I cry very easily.  At first it was hard to open up about how I was feeling, but after I started to talk about it I started feeling better.  There are different ways and people you can reach out and talk to about your feelings:  close family and friends, PH support groups and mentors, and counselors.  I have my husband to talk to, but my mom lives far from me so I call and email her.  I have also attended support groups and counseling.  Often, I communicate with my mentors about certain issues that may arise or just to talk to a friend.  That constant communication helps me cope and provide clarity about what is stirring on inside my mind.  A couple links to PH mentors are http://www.phassociation.org/Mentors and http://peernetwork.net/.

In Addition…

There are other ways to help with depression or even preventing from getting depressed although it does sneak up on you sometimes:

• Get involved with volunteering, clubs/organizations (like a book club), or use your special talents to help others
• Meditate on positive messages, such as Bible verses, quotes, or proverbs
• Journal-- writing it out is another way I found of releasing my feelings
• Relieve stress by making lists, delegating responsibilities, using planners and alarms
• Talk to your doctor about medication for depression
• Get out, not just seeing the doctor, getting your labs done, or going to work, but to have fun!

Living with PH and other chronic illnesses can be overpowering at times.  I don’t want it to rule my life and I don’t want it to rule yours.  If you have any other ways you cope with depression please share so we may help and uplift each other.

May peace be with you,

Shawna