In Spite of PH

Kevin and Karen poses with some of their parade
walkers after Marietta's notoriously hot and humid Fair Parade.

It’s November and I am fired up. Is it because it’s PH awareness month? Possibly. Is it because I have learned a lesson in my life with PH and I am excited to keep going from here? Maybe. Final question, is it because I feel the last year has taught me something great, and I am burning to share it with the world? Well... it is a combination of all three, really. A year has passed since my first awareness month, and I have learned so much in the last year; talked to so many people; and I hope, helped one or two people along the way.

In January 2013 I decided that I was going to run for office in my hometown. It is something that I have always wanted to do, and I figured “why not now?” I am feeling better than I have in years, and I figured that if nothing else was learned, I would need to keep myself organized for my health, and to keep my PH from getting the better of me. At the end of the campaign though, as I look back at it, I realize I did something else entirely. As my wife, Karen, and I reviewed everything the other night, as we talked to our friends, the campaign volunteers, and the city officials who helped me prepare for my run for office, we came to a startling conclusion that hit us over the heads after my friend and fellow PHer Teresa Hayes stated “You live your life in spite of PH.” That’s when it hit me, she is right. Karen and I didn’t let PH rule us this year like it did last year; We lived our lives in spite of it; we did not let PH guide us, we controlled it, we took this “new normal” and just made it our “normal.” I didn’t let my pulmonary hypertension deter me, or hold me back. I actually used it as a springboard to start the conversation, I used my PH as the motivation to do this, to live this year with purpose and drive, and I didn’t realize I had done it until Teresa made her observation, and until Karen informed me that I had, in fact, done just that. Not at any point in the last year did we let PH deter us. If I had reservations about anything, Karen helped me find a solution that was beneficial to us both. I walked, I talked, I attended every event I could fit into my schedule, and I did it on my terms, in my way, making PH work for me. 

I understand that for every one of us, something may be different, that what works for me or you may not work for someone else, but it is possible to redefine ourselves with PH, and not let PH redefine us, at least not in a negative light. I have heard patients say that they feel different now, that the new normal has changed them. In some regards that’s true. Perhaps it’s a quiet fishing day now instead of a canoe trip on the lake. Perhaps its a relaxing car ride when before it may have been a bicycle ride. But you don’t have to let pulmonary hypertension change YOU; who we are at the core of our beings. That person who laughs; that person who enjoys a good book in the backyard; that person who strives to make their community better, they still exist. The only thing that changes is the means that we use to achieve our ends. You can still do what you want to do, you can still strive for something more than the sum of your parts. We, as chronic patients, have to deal with a myriad of things that “normal” people do not. That doesn’t mean we can’t make the disease work for us. I already see it in so many patients; people who have taken PH, and found a new cause, a new purpose, a new way of living that doesn’t restrict them. It empowers them to work for our community, and to work for a common cause. As patients in general go, we can do the same thing, but for our families, for our communities, and for ourselves. We don’t have to let PH define us, we can define it, and determine what this disease is to us. Is it the end of our world, or just a new chapter in our lives that we already have so much experience living? Is pulmonary hypertension a reason to curl up, or a reason to redefine ourselves and our purpose on this Earth? I think that it can be just that, a redefinition of not who we are, but what we are here to do.

Karen and Victoria play on the front porch. Life with PH
doesn't mean changing who we are, it just means altering
how we do things. Sometimes if a bike ride is not possible,
it's time to break out the bubbles for our family's
outdoor night.

I have learned so much about myself in the last year and how to live with pulmonary hypertension. This disease motivated me to throw my life into another gear, to do what I could with what I had and strive to make my world a better place to live. I used PH to start the conversation, and then to springboard from it into how we were going to make my town a better place to live. I took so much motivation from my fellow patients who have redefined themselves, and do not let this disease rule them, they rule it. We have to live with pulmonary hypertension, that is an unfortunate fact, but I believe we each can let PH rule us, or we can rule it. This last year, I learned how to not just live with PH, but how to make it work for me, how to use it, instead of letting it use me. I know one thing for certain, if I can do this, without realizing it, then there are so many more of you out there who can do this, too. We all need to find the exact path that works best for us. That is why I am fired up this November, because I have learned that I made my entire year an awareness event, without even trying. I may have lost my election (by 275 votes in a city of 15,000), but I feel I did so much more than just run a campaign, I feel I did so much more than learn to live with this disease; I learned how to redefine myself, I learned how to live my life in spite of PH, and I have learned that anything is still possible, we just have to learn for ourselves how to achieve it. 

Art & Coping: Relieving Stress Through Creativity

Mimi Jordan

“With PH, you can get a sense of feeling not as worthwhile; art has given me a feeling that I can still do things. It is something you can share with others, art of any type is a creative work, and is a positive and helpful thing to do.”

Mimi Jordan has found a way to turn the hardships of living with pulmonary hypertension into something positive, art. While Mimi has always been an artist, due to PH and limiting physical activity, she has found more time to focus on her painting. Mimi paints on average four-five hours a day, five days a week, or whenever he schedule permits. She states, “It is easy to become negative about the things you cannot do living with PH, you need to find some way to cope in a positive way.” Painting, for Mimi, has become a meditative experience and an important part of her PH. She believes, “you need to find something positive, and creative, art has given me a feeling that I can still do things.”

Unfortunately, due to her physical limitations, Mimi is unable to visit museums or art galleries; however she enjoys browsing various art websites online such as One Art World and Saatchi Online. In addition to this, Mimi has a site of her own! Take a look at Mimi’s paintings.

BreAnn McFarland

Similarly to Mimi, BreAnn has also found comfort in art work.  Always being interested in art, BreAnn quickly realized how great a coping mechanism it was for dealing with her PH, and migraines post lung transplant. As a child, BreAnn possessed the talent for being able to draw something by just looking at it. After diagnosis, she was no longer able to keep up in school and had to switch to homeschooling. Fortunately, BreAnn was given the gift of a lung transplant that rid her of PH, unfortunately, the side effects of the medication she was placed on were chronic migraines. In the process of enrolling into college, BreAnn needed an activity that could get her out of bed and rid her depression. She soon realized that school could not become a part of her plan anymore, and became a full time crafter.

PH bracelet made by BreAnn

BreAnn makes stationary ranging from cards and boxes, to gift bags and jewelry and even temporary tattoos! She is also an avid Photoshop user. She states, “doing what I like to do every day gives me a reason to get up. I love more than anything to make things for people.” Through crafting, BreAnn has also acquired an online family from sites such as Facebook, Paper Craft Planet, and Crafts digital art center (CDAC).

Although she would like to, BreAnn is unable to visit museums or art galleries due to her lack of mobility caused by the migraines. Even though she is unable to enjoy art in those ways, she expresses her feelings on the benefits of creativity and art work. “You need some way to express what you’re feeling creatively as a way to get your feelings out. Great art has come from bottled up emotions. Art is not something you have to share, but something that helps!”

Brandi Stickney

Although Brandi has always been interested in art, she more recently has become interested in taking photographs both for herself and for others.  Upon diagnosis of PH two years ago, Brandi realized that photography was something she was really good at, and an activity of little physical demand. Brandi spends about 2-3 days a week, and around 20 hours a week on her photography. She has found children her favorite subjects to photograph because of their innocence and realness. Brandi states, “it makes me feel like I can do something that is in my control, because I cannot control the way I feel.”

Brandi frequently enjoys visiting museums and looking at other people’s art work to get inspired. For others who have not yet found that perfect coping mechanism, she shares “having a hobby you really love gives you a sense of control in an otherwise chaotic situation. It keeps your mind off of the things you cannot do.”

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!

PH Goes to College

Part I by Kiara Tatum

It’s August, which means its back to school time for students.  But when you have Pulmonary Hypertension, it can change the flow of the college experience.  Whether you are a commuter or live on campus, having PH and going to college is rough.  I had symptoms of PH while enrolled in college; however, I wasn't diagnosed until two years after graduation.  However, I know how difficult it was for me to get around the college campus and to balance the shortness of breath, fatigue, chest pains, and stress of the college course load as well as a social life with friends.  Here’s some helpful advice that might be helpful to you during your college days.

1. For those living on campus or away from home, find a PH specialist that is near your college campus that you can turn to during a medical emergency.  However, you should be keeping in contact with your PH specialist from home since you will be returning home for doctor appointments and care while not in school.
2. Go to the campus disability office or office of accommodations right away.  By going to the disability office you can find out what services are offered to students with disabilities and what your rights as a disabled student are, especially if you have to be hospitalized and will miss classes as well as need to make up exams, labs, or special assignments.  Make sure that the disability office has a copy of your necessary medical documentation on file.
3. Let your professors know that you have Pulmonary Hypertension.  Explain to them that you may miss classes due to your illness.  However, you will inform them via email or voice mail, so that you can continue to keep up with your studies and assignments.  But you may need extra time to complete assignments if become hospitalized or have bad PH days.  
4. Whether you live on campus or commute, be prepared for a medical emergency.  Keep the emergency documentation on the room refrigerator, keep in backpack, or even put on your cell phone.  And make sure the campus medical office has a copy of your medical records as well as wear a medical alert ID bracelet.
5. Use your academic planner to keep track of not only of all your assignments and due dates, but of your medical appointments, medication reorders, and medical contact information.  This will help you be less stressed when trying to balance the college life with your medical world.
   
6. Get email and cell phone number of at least one person from each of your classes that you contact and obtain a copy of notes and/or class assignments if you have to miss class. This will help you to stay caught up if you have to miss classes due to bad PH days or hospitalization.
7. Stay in contact with your parents or caregiver.  This is especially important for those who will be attending college for away from home.  Those who love you should hear from you each and every day.  It can be a quick text if you’re busy, but they should know how you are feeling in regards to your PH and well being at school.  If you’re not doing well, then be honest and let them know that today wasn't such a good day and explain to them why. 
8. Oxygen can be an asset when walking on a large college campus.  Getting around on the college campus can be difficult, so adding oxygen or using medical equipment like a scooter or motorized wheelchair can help you get around the campus with ease.
9. Take good care of your physical and emotional needs especially if you live on campus and are away from home.  Always make sure that you take your medication as prescribed and use your coping tools to get through stressful times.  It’s great to have a social life, but keeping a good balance will help with the course workload and keep your body and mind less stressed.
10. Know that it’s okay to say that you have to go home or that you have to drop a course.  Sometimes you will miss too much class due to hospitalizations or bad PH days and need to drop courses during the semester.  You may not always be able to keep caught up during that semester, so taking a leave may be necessary.  Just be okay with that decision and know that you can always go back next semester.  Even though you may feel angry and disappointed, stay motivated and positive.  You will get your degree, no matter if it takes you a little longer than someone without PH or a chronic illness.

Stay tune for PH Goes to College Part II.  Hear from the voices of current college students that are diagnosed with Pulmonary Hypertension.

A PHighting Disease Turned Into a PHenomenal Diagnosis

Haley Ann Lynn

When asked to do a guest blog of course, I excitingly agreed, then sat back and pondered on what the hell that exactly meant. Guest blogging? What was I supposed to be writing about or HOW was I supposed to be writing all this? Well, these lovely folks sent a list of writing ideas that I scanned over and after spending a day at the pool in the Texas heat, my idea came over me like a wave.

Who would I be without Pulmonary Hypertension? I tell people all the time, “Don’t let this disease define you, don’t let it consume you,” blah blah blah. But I ended up swallowing my own words because I've let nothing but this disease define me, for the good. Pulmonary Hypertension in a way rescued me, letting not only myself know, but skeptical others around me that in fact something WAS wrong. I was not normal; I was never meant to be normal. I've always been PHenomenal!

Rewinding far back into my life, the day I had my first episode, I was eleven years old in a 6^th grade gym class. We were expected to run these laps, and I just rolled my eyes—being the pre-teen I was—because for some reason I never enjoyed gym. This particular gym class was crowded with athletic girls who participated in track and basketball.  It made this this task just so uneasy. That day during my laps, I felt an extraordinarily strong pain come over my body, my vision was gone and I began gasping for air. I threw my hands behind my head and stumbled to the line where girls were finished, and I pretended nothing was wrong with me. From that day on these “episodes” were a constant companion. I had to make room for them in my life when I walked up stairs, in dance class… everywhere. I hated them, but I learned to work around them. My friends, however, not so much.

Moving into high school the episodes grew just like my body. They were not only everywhere, but they were all the time. Stairs? Impossible. PE class? Hell no. How was I supposed to function like a normal high school kid if I couldn't even walk around like one? Sports, walking to class, climbing bleachers for football games and just keeping up with friends in the hallway…these were all hard work. My physical body began to wear down, and my mental state began to fade as well. Friends and people in general were horrific. I was an outcast, a girl who faked breathing problems, a girl who was gaining weight, a girl who wasn't cool and eventually a girl who had no friends. People had fallen victim to this invisible disease not believing a word or a thing I did. It was easier to distance myself from normal life and exist in my own private world than to deal with the cruel people who broke my world every day. I was a loser at this normal life thing and extremely broken, inside and out. Graduation Day was like being let out of a damn cage, and it felt so good! I turned 18 a month later, and then quickly after I had my first appointment with a cardiologist. The minute Dr. Ray looked me in the eyes and said, “Something is very wrong with you!” I smiled the biggest I had in years. He turned me toward a mirror and exposed me for exactly what I was, showing me the invisible monster growing on the inside of my body. It wasn't always the easiest thing to accept, wake up to and deal with on a day to day basis, but after a while this monster went from a disease to a PHenomenal diagnosis.

Overall, who would I be without Pulmonary Hypertension? I would still be a loser, so called liar, pudgy, overdramatic, very alone and depressed outcast that I was. I would still be this “different” person that people use to make fun of, push away and call names. I would still be a non-normal person trying to live a very normal life. I never fit into that, and I wasn't supposed to, so thank you to all of those high school jerks that told me that! Turns out you were right! Pulmonary Hypertension showed me how strong, capable and simply PHenomenal I always have been and always will be.

-haley.

www.phenomenalhaley.wordpress.com

Haley Ann is a blog not centered on a disease, but a lifestyle change with having a disease. Covering issues from doctors, treatments, mental struggles, tattoos and even fashion. This blog is not to remind you of your flaw but how to live PHenomenally with your diagnosis.

Celebrate Your Friends the Right Way This National Girlfriends Day

August 1^st is National Girlfriends Day!  National Girlfriends Day is the celebration of friendships between women. It is a time to recognize all of the girlfriends that you have in your life. Positive relationships with friends and family are especially important to young adults living with pulmonary hypertension (PH). Good friends are there to help when you need it most; whether it is to help you run errands, raise awareness, be there for support or talk to you when you are feeling down.

National Girlfriends Day is a special day for women all around the country. It is a great time to reflect on your friendships and how much they mean to you. In honor National Girlfriends Day, let’s learn more about the importance of friendship and what having good girlfriends can do for you.

What are you celebrating?

Through celebrating your girlfriends this National Girlfriends Day, you are recognizing your appreciation for the women in your life and celebrating the benefits of these relationships. Having good girlfriends can benefit you in ways you may not even know about. The benefits of having good friends include:

• Helping you live a healthier lifestyle - Friends can encourage each other to be active, eat healthier and overall live a healthier life style.
• Increased happiness – Having good girlfriends can make you happier.
• Better coping skills – Friends can help you cope with difficult situations.
• Other possible health benefits

Learn more about the importance of good friendships online through the Mayo Clinic.

PH and Girlfriends

Colleen Brunetti expresses the importance of her girlfriends and some of the things they have done for her since being diagnosed with PH. Colleen says that her friends are always there to support her. From her best friend to people she knows from around the community, she has found that she can depend on her girlfriends when she needs it most.

According to Colleen,  “My girlfriends get me through - whether helping me to cope as a mom with a major illness, supporting fundraising efforts, listening to my fears, or cheering me on, I know I can count on them for a supportive shoulder, a listening ear, and sometimes a much needed laugh.

My best friend Rachel is the one I turn to when I not only need to talk, but when I need a kick. I told her right at diagnosis, "There will be plenty of people to hold my hand and let me cry about this. YOUR job is to tell me to buck up and move on if I get too self-indulgent and mopey."

My friend Jen and I knew each other from the dance studio where I work out but hadn't done much more than say hello in passing. When I held my Zumbathon fundraiser last year she TOTALLY stepped up to the plate and helped create these amazing t-shirts that were a huge hit. I now count her amongst my dearest friends.”

How to Celebrate Friendship This August

If you have girlfriends that mean a lot to you, make sure to honor them on this year’s National Girlfriends Day.  Here are a few ideas of what you can do this August 1^st to celebrate your girlfriends:

• Recognize your girlfriends through social media by posting pictures of you together, writing on their Facebook wall or giving your friend a shout out through a tweet on Twitter.
• Send your girlfriends a small gift, like a friendship bracelet.
• Write your friend a letter (or send an e-card).
• Have a girls day doing your favorite thing.
• Be a good friend all year long, not just today!

For more ideas, check out this list of 20 Healthy Ways to Celebrate your girlfriends this National Girlfriends Day! To learn more about girlfriends and friendship in general, check out Girlfriendology. This website focuses on helping women build and maintain positive relationships with each other.  It also encourages women to celebrate their friendships and voice their appreciation for the women in their lives year round.  This website provides lots of good information and tips that will help you continue to have successful relationships with your girlfriends. Enjoy celebrating your girlfriends and all the benefits of friendship on this year’s National Girlfriends Day!

By Laura Johns, Patient & Caregiver Services Intern 

"I Breathe; Therefore, I live." A Life Lesson From My Grandmother

By Kevin Paskawych

I know we all have heroes. We look up to athletes, celebrities, politicians; the list goes on. Patients are no different, though our heroes include spouses, children, parents, doctors, and even other patients often make the list. I have to say that my biggest “PH Hero” is someone who taught me how to deal with a “new normal” and life in general, years before I ever knew I would need the lessons. Charlotte Mayhood lived her life completely, raising five children, and centering herself in the lives of her grandchildren. She was a published poet, a cornerstone of her community, and above all taught her grandchildren to use our imaginations. My Grandmother taught me so much, but perhaps her biggest gift to me I didn’t realize until just this last year. Sadly, it was 6 years too late to thank her for the lesson, so I figure the best way I can thank her is to pass on these teachings... are you ready for it? “I’m still breathing, so I guess I can’t complain.”

It seems like an odd lesson, if you can call it one at all, and it has been my standard response to greetings for years. I picked it up from my Grandmother Charlotte, who used it as her standard response, although that is precisely why I find it special. My grandmother was diagnosed with severe Rheumatoid arthritis at an early age, doctors predicted she would be crippled by 40... and they were, more or less, right. When her first grandchildren started arriving she was beginning to stiffen, and by the time her last grandchildren were born the bones and joints in her hands and feet were fused, as she had had several surgeries to replace her ailing joints. Despite her limitations she would still play as well as she could with all 12 of her grandchildren, write her poetry (with a pen for the longest time until finally she began using a typewriter.. using her middle finger on each hand to type) and try to make herself as involved in our lives as she could. Through all of it, and the 24 years that I knew her, she never complained. If you ever asked her if she needed something, or if you simply wanted to ask her how her day was, the response was almost always “I can’t complain, I’m still breathing.” 

My Grandmother wasn’t that stubborn, don’t get me wrong. If she really needed help with something, she would ask... it just wasn’t incredibly often. After my Grandfather passed away, our family openly worried about how to take care of her, and she answered our concerns with remodeling her house with chair lifts and special furniture that made her life easier. She spent the next twelve years living mostly on her own, still insisting that most family Thanksgivings be held at her big blue house, even though it meant more work for her overall. Ok... she was a little stubborn... but her light heart made up for it. Even though she could barely walk, she loved being outside. Despite not being able to use her hands, she loved to write; and although she was in nearly constant pain for much of her life, she loved living. It’s why I admire her so much even to this day, and when a friend asked me several months ago how I was dealing with PH and my “new life” so well, I knew how to answer him. My Grandmother taught me how.

The Author with his Grandmother Charlotte, circa 1986.

 I realized that as long as I was still breathing, things could be worse, and that I needed to stop fretting over what was wrong with me, and start enjoying the world around me. It’s not easy, as I am sure all of you know, and I still have my bad days, but every time I hear myself say “I’m still breathing” I have to smile a little, and realize that in fact, I am still breathing, which means I am still here. My Grandmother was the first person who taught me to use my mind, and it lead me to study the philosophical concepts of Descarte and his “I think, therefore I am” idea. I guess now I should say “I breathe, therefore I live.” It is something I think that everyone, no matter who you are or what you do, needs to contemplate; but for us, for patients, this is something that can really help us on our down days, and make the good days even more enjoyable. We all have things we can complain about, and we do. But they are trivial when you look at the big picture. I like looking at that big picture, and even though I can’t make a friend’s wedding because of a doctor’s appointment, or my Adcirca gave me a wicked headache today; I was still here to have the headache, to see the doctor and find out how I’m doing. I am still here, I am still breathing. I can’t complain about that.

I know it’s not an easy lesson, and some patients may think that it is just hot air, but I am telling you, it works. Take a few minutes every day, and just breathe. It doesn’t matter if you are having an up day or a down day. Just breathe. Contemplate your day, think about the world around you, and when someone asks you how you are doing, I dare you to try it. Answer them with “I can’t complain. I’m still breathing.”, and see how you feel. Try it once.... I triple-dog dare you.... and remember that “I breath, therefore I live.”.... and when you crack that little smile, and the next breath you take smells a little sweeter... say a Thank You to Charlotte Mayhood somewhere in your mind, I always do.

Generation Hope Goes to Boston

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Posted by Colleen Brunetti

On June 8^th, PHA brought their education program “PHA on the Road” to Boston, MA. Doctors, patients, caregivers, and family members convened at a beautiful hotel on the Charles River. It was a day of education and networking, a time to make new friends, and a time to meet up with old.

The day started with pre-forum support groups where newly diagnosed, longer-term patients, parents, and caregivers could meet up specifically. I, along with Kiara Tatum, led the newly diagnosed group. I remember the early days of diagnosis…wondering how to find the right doctor, trying to have confidence in your treatment plan, the worrying and wondering that comes with a diagnosis like pulmonary hypertension. So many patients reached out to support us in those early days – it is a privilege to pay it forward and offer that support for others.

The opening session went over diagnosis, treatments, and long-term management of pulmonary hypertension. No matter how many times you attend these events, a refresher always helps, along with the very good chance that you will pick up one or two new things along the way. Break-out sessions throughout the day offered time to learn about more specific areas of interest, such as exercise and diet, congenital heart disease, and preparing for travel and emergencies.

Colleen with Jeannette Morrill

The highlight of the day’s events for me, as I’m sure for many others, was listening to Jeannette Morrill talk about her journey with PH.  Jeannette has been diagnosed for 37 years!  This is totally unheard of in the PH world - especially as her diagnosis came in 1976 prior to any real treatments being available.  Jeannette's story is one of perseverance and hope, brutally honest in the challenges, and full of celebration in the triumphs.  

Finally, the day wound to a close, ending on a high note, with an overview of clinical trials for new treatments, some perhaps not so promising, but several that may be set to offer new hope for patients.

As the conference wound down, Generation Hopers gathered in the hotel restaurant for our meet-up. We’ve had meet-ups like this a few times before, but it never ceases to amaze me, sitting there watching everyone interact. The connections that happen are nothing short of spectacular. PH can feel pretty isolating, but I could look across that circle and see another mom raising young children while she battles PH, and I know she “gets it”. Two other patients connect as they share news of their pending lung transplant evaluations. What’s it like to be in your 20s or 30s and staring down a full lung transplant? I don’t know. But they do. And when you face anything like this, you need each other.

By far the highlight was sitting in that circle, listening to each attendee talk about their hopes – what gives them hope, or what they have hope for. Hope that children will no longer know their mom as “sick”, hope for a favorable transplant experience, hope to have to use less oxygen, hope for new and better treatments… the hope that binds us together and spurs us forward. Thank goodness for moments like these.

Love and Having PH

Jen Cueva and husband

Whether you are dating, engaged or newly married, having your significant other transition into a caregiving role can be difficult and overwhelming. You may feel guilty for placing a “burden” on your significant other. You may even feel unsure about how to initiate the conversation about PH. You can tell your significant other has a lot of questions too. We spoke to PH patients who have been through this challenging time and received some of their advice:

Build your relationship. Especially if you are in a new relationship, you may feel reluctant to reveal the realities of living with PH and that’s okay. Diagnosed at age 5, Hannah spent her dating years with PH and says she “never made a big deal about [her] disease.” Instead, she notes it is important to get to know each other first. Regardless of your disease state, all relationships are based on mutual trust, care and respect. Once your relationship has a solid foundation, feel free to share as much or as little as you want about your life with PH.

Hannah Lahmeyer, husband, and precious daughter

Be honest. When you do decide to talk to your significant other about taking on a caregiving role, it is important to be honest. You want to make sure you significant other is prepared for living a life with PH. Consider these tips when preparing to talk to your significant other about PH:
1. Encourage your partner to visit the PHAssociation.org/AboutPH to educate themselves about PH
2. Take your significant other to a doctor appointment with you and give your significant other a chance to ask the doctor or nurses any questions
3. Do not hide or exaggerate any part of your diagnosis or medical needs

Especially if you are engaged or considering marriage, you and your significant other may also want to discuss finances. As you already know, treating PH can be very expensive and your significant other may be unaware of the full costs. Ensure you talk openly and honestly about budget and health insurance concerns. If you and your significant other have a tight budget, meet with a financial adviser or visit PHAssociation.org/FinancialAssistance to find ways to cut drug costs and other expenses.

Split up responsibilities. As Kevin, a newly diagnosed patient, admits “daily chores can be doubled, as the caregiver is doing for themselves as well as for us.” Though this may be the case, there are still things you can do to help ease the workload of your significant other. If it is difficult for you to go grocery shopping, consider creating the grocery list and planning meals for the week instead. If your significant other provides the income for both of you, make the budget and find ways to cut costs. On good days, try to wash clothes or straighten up around the house. Even if you cannot do as much as you’d like, your significant other will appreciate your efforts.

Kevin Paskawych and wife

Care for your significant other. Kevin reminds us that your significant other chooses to live with PH and care for you. Don’t forget your significant other has needs and feelings too! Diagnosed in 2005, Jen’s husband did not hesitate to take on a caregiving role. She admits she feels her husband “gets the bad end of the deal” from the ups and downs of PH and works very hard to take care of her. However, Jen does what she can to stay connected with her husband and ensure he remains healthy.

Jen recommends making sure your significant other has time for self-care. Encourage your significant other to take a few hours or a day to spend time with friends and other family members. Look for a fun art or fitness class for your significant other to take. If your finances allow it, surprise your significant other with a massage or spa day. Also, suggest joining PHA Caregiver Mentors or a PHA Support Group.

It is also important to pay attention to your significant other’s mental, physical and emotional health when they become your caregiver. Try to make a daily habit of asking your significant other about their day, and how they are feeling and encourage them to answer honestly. Pay attention to symptoms of caregiver burnout, which include changes in weight, changes in sleep patterns and feeling sad and irritable. If your significant other demonstrates any of those symptoms, consider talking to them about seeking help from a doctor or counselor.

Most importantly, don’t let caregiving get in the way of your romantic relationship with your significant other. Go out for dates, or plan one at home. Complement each other. Laugh, love and most of all have PHun!

By Imani Marks, Patient & Caregiver Services Intern 

Special thanks to Jen, Hannah, and Kevin who contributed their stories and advice for this story. 

Article also featured in PathLight

Like Oil and Water - Work and PH

By Kiara Tatum

The academic school year has finally ended at the college, and my return to work after seven years has a summer break.  It felt great to be working, using my master’s degree in social work, teaching diverse students, having discussions on contemporary social problems, and actually getting paid to work.  I didn't know if I could actually do this, but I wanted to try it—failure or success didn't matter.  I didn't let my fears, anxiety, or self-doubt stop me from pursing this new journey in my life.  

Working and having PH can be a difficult especially if you don’t have an idea as how to start, what job you can physically and mentally do, or support on the job.   For those of you thinking about returning to work and those of you who are working, I have a few helpful tips to share with you that I learned from my own experience.

1. Know your rights as a disabled employee.  All employers have policies, and knowing what those rights are helps get through times when you do have to miss work because of your illness.  After my hospitalization at the being of the spring semester, I learned that I had the right to cancel classes, and it was based on how many classes and hours of each class that determined how many classes an adjunct instructor could cancel before it impacted your contract with the college for the semester.  And even before my return to work, I met with a disability advocate that helped me to understand my Social Security Disability Insurance when I start work.  I found that to be most beneficial to me because I didn't want to lose my Medicare insurance because I wanted to try work again.  Disability Law Handbook 2013
2. Don’t do it alone.  Each state has an organization to assist those with disabilities to return to work or assist with maintaining employment.  Find out what your organization is and go to them for help.  They have services from job readiness workshops to job coaches.  I met with an advocate to help me navigate the different systems that were involved if I decided to return to work.  I met with her almost a year before I actually decided to look for employment.  There are people who know these policies and advocate on the behalf of the disabled.  There is so much I have to do to maintain my Medicare medical insurance as well as my Social Security Disability Insurance, but I didn't lose those necessary benefits despite going back to work.  I even received information on transportation options for work since I don’t have a car and can’t rely on my family to chauffeur me to and from work. Social Security Administration and Work Site
3. Don’t hide your illness.  The whole company or in my case school doesn't have to know, but at least your direct supervisor and a close colleague or two should know that you are diagnosed with PH.  This will help you when you have an emergency at work, have to take a sick/personal day, or need support on the job.  I always feared that I wouldn't be able to find employment because of my oxygen tank travelling with me.  But I felt very comfortable interviewing for the job, and I obtained the job based on my knowledge, skills, and experience.  I couldn't hide my illness, but I didn't feel the need to hide it.  Slowly I shared my illness with a few colleagues once I felt comfortable, and some colleagues were curious and did ask.  I shared the PH diagnosis with my students on day one. I wanted them to be comfortable in the class and not staring at me during a lesson.  It especially helps when I’m having a not so good day or have to cancel or miss class.  
4. Give yourself a break.  Whether it’s a summer break, a week’s vacation, or a personal day, take that time.  I may not have a full-time job, but teaching is full-time work.  I have to create class lessons with attention grabbing activities, create and grade assignments, exams, and projects and be supportive to the students.  It’s a lot of work, so the summer break will be a great way to rejuvenate myself and spend leisure time with my family and friends.  You need to have “you time” every once in a while.  
5. Do it your way.  Sometimes how others do the job may not be the way that you can do the job, so do what works best for you.  Because I have a chance to be creative when teaching, I don’t lecture the entire time.  I have break-out sessions for students to participate in small group discussions.  This allows me a chance to breathe and relax if I need it.  Also a chance to blow my nose and drink some water—I use oxygen supplement, so my nasal passages aren't the best and I’m always dry and thirsty.  Sometimes employers are able to assist you with the right equipment needed for you to do your job efficiently for you.  Just ask your supervisor, which is also a reason you don’t want to hide your PH diagnosis.  This gives you opportunity to be creative and persevere despite having PH.  
6. BYOL – Bring Your Own Lunch.  I did notice that I was retaining fluid more during my work days because I was eating at the college rather than preparing food at home.  I tended to eat more unhealthy foods such as bacon, egg, and cheese breakfast sandwich and for lunch turkey sandwich with mayo, lettuce and tomato and a side bag of chips.  To a healthy person this would be okay, but for someone on a low sodium diet bacon, cheese, and turkey cold cuts are on the list of foods not to eat.  So by preparing healthier meals at home and bringing them with me, I was able to control my fluid retention easier.  It’s not fun working and being short of breath and lightheaded because you’re eating the wrong foods.  
   
7. Prepare ahead of time.  With PH, you can wake up have a bad PH day.  So by preparing the night before or preparing Plan B and even Plan C or D; you can still work despite not feeling so good.  Lay out your clothes out the night before, utilize a planner for your schedule for the day in advance, and give yourself at least two hours in the morning before you have to leave for work.  You would have plenty of time to shower and dress for work, to eat a healthy breakfast, to prepare a healthy lunch and a couple of healthy snacks, and to relax and not rush in the morning before having to leave for work.  I like to watch the news in the morning before I leave for work, so I leave myself about three hours before work.  And when I get to the college I have an additional two hours to review my lesson plan and make copies.  If I’m having a not so good PH day, I can change my teaching style for the day.  I may have more break-out sessions as opposed to me lecturing for class.  I can also incorporate an activity to go along with the lesson, so I have a lot less work to do.  I also may sit rather than stand during lecture if I'm not feeling so well.  But I allow myself to have options.  Maybe at your job, you can do a day of paperwork from home or something less strenuous on the job that wouldn't require you to lose a day of work if you’re having a bad PH day.  
8. Don’t be so hard on yourself.  I know sometimes you want to push through and be like every employee or even go beyond what’s expected of every employee, but your body won’t always allow you to do it.  And that’s okay.  I know that if I can’t come to the school because I’m in the hospital, there’s nothing I can do.  I also know that it’s okay that I can’t come to the school on a different day from what’s scheduled with the bus company, but I won’t let it keep me from supporting my students any way I can.  If I can’t grade an assignment because I needed to take care of me; then I have to just do that.  I think this was the hardest lesson for me to learn through my work experience, but I’m always ready to relearn this lesson as new challenges comes my way, and I have to let go of my issues because it is my issue.  Everyone else was okay with me having to say no, but I just wasn't okay.  I have students who said I was an inspiration to them; I had students that wanted to know what other classes I would be teaching, so they could register for those classes.  I even had students tell me that I was their favorite teacher this semester.  So sometimes by being different, being more creative, and being honest have a way of benefiting others just not yourself.  

This academic year has been exhausting and stressful but fantastic and exciting.  I can't wait to do it all over again fall semester.  I met so many new people with different personalities, and I had so many different conversations on various topics, and I just socialized with regular people.  Going back to work a rewarding experience for me because I felt like I was productive.  I haven’t felt so good in a long time.  And it is possible to work and have PH!

In May, All Things Are Possible

By Kevin Paskawych

There is something in the air... and I am not referring to the pollen that constantly reminds me of why I actually “kind of” like winter. My allergies aside, there is something magical about this time of year; as my grandmother used to say, “May is the most hopeful month of them all.” I have to agree. May has always been a month of hope for me. Graduations bring the hope of new adventures, new jobs bring the hope of personal betterment, and new friends bring the hope of something more to this life. This year, my hope is for continued improvement with my condition and for a new life adventure that last year seemed to be on hold indefinitely.

Arguably, the hardest part of dealing with PAH is the fundamental lifestyle change that most of us have to endure. What was our daily life is quite often thrown out, and we are forced to adapt to what is so often called our “New Normal.” Activities that we once knew as routine can be forbidden. And for some of us, working and even our hobbies become impossible tasks. Having to make so many changes so quickly can be depressing, and I have heard more than one patient comment on how their work or hobbies—activities now forbidden—were the reason for them to be alive. It is easy to feel the pain in a statement like that; it is harder to understand that all is not lost, and, especially at this time of year, there is hope.

Perhaps it is fitting that World PH Day is in the month of May, particularly for younger patients. If May is the most hopeful month of them all, then I believe in a beautiful symmetry with being a part of the generation of PHers known as “Generation Hope.” We have the hope of new research, new findings, and new medications that are working towards giving us longer, fuller lives. We also have our peers and their stories of improvement, their stories of overcoming obstacles many of us have, and their support as part of the group to get through the new challenges we face in our lives. For my own part, this May is particularly hopeful.

One year ago my fiancée Karen and I had to postpone our wedding indefinitely due to my then “unknown” condition. We had to stop our strolls along nature trails around Marietta and kayaking afternoons and bike rides stopped. We wondered if we would ever get to do these things again the way we once had. Then, we discovered that changes in life did not mean we had to stop life. Kayak trips became fishing trips from the shore; nature hikes became light strolls through the neighborhood. We didn’t let PH take joy from us; we simply adjusted our activities and time together fittingly. We found our own hope in finding things that I could still do, that were adequate substitutes for what we used to do. We found hope in our doctors who diagnosed me, and worked with both of us; we found hope in the medications, and how quickly I seemed to respond to the various treatments. Finally, we found hope when the doctors agreed to release me for pulmonary rehabilitation. One year after we initially postponed our wedding, Karen and I were married this past weekend. We have found yet more hope in the month of May, and we have hope aplenty for the time to come.

May is an amazing month, and I believe it can prove to any of us that hope is there, that joy is there. We have to find it for ourselves; the path of one is not necessarily the path for another. In my case hope came from my improvement while on medication, the joy from finding new, more easily doable hobbies and pastimes; and being able to do that which had been postponed last May. The year takes shape this month. As the days get longer, the weather gets warmer, and we see the rebirth from winter’s cold grasp. This is going to be another year of hope; that there will be new research, that there will be new therapies, and that we will all have a good year. May is the month of hope. It is the month of rebirth. It is the perfect time of year.

Spring Into Action!

By Kiara Tatum

With warmer temps here, it finally feels like spring in the air.  Keeping that in mind, it’s time to get outside and spring into action.  It’s not easy for young adults with pulmonary hypertension to do a lot of outdoor activities because of the limitations that our bodies have.  We can’t run or jog 10 miles a day or swim laps.  Here are some tips that might help you get started to getting active this spring.

1. Before you start any exercise or activity program, consult with your pulmonary hypertension specialist.
2. Start slow.  Begin with a short distance and short sessions.  Start walking, riding a bike, or whatever chosen outdoor activity for about 10 minutes per day, at least three times a week, and close to home.  Once you notice that you are able to endure that without becoming too short of breathe for you, then increase your days and distance or time you do that activity.  Then maybe by the end of the summer, you will be able to take a nice long hike or ride on a bike trail.
3. Be prepared.  Make sure that you have bottled water with you or access to clean water, wear sport socks and appropriate sneakers, and lightweight clothing.
4. Don’t be ashamed to rest.  If you are doing an outdoor activity, and you feel yourself becoming short of breathe, dizzy, heart palpitations; then just stop and rest.  It’s nothing that you should be ashamed, embarrassed, or afraid to do.  Your body has limitations, and because of your PH diagnosis can’t always push yourself on.
   
5. Pay attention to the temperature and humidity.  Don’t do an outdoor activity if the temperature and/or humidity is too high.  It’s harder to breathe in the humid weather for those with pulmonary hypertension or other lung illnesses.  
6. Don’t do it alone.  Sometimes what’s great is to have a friend, family member, or even your dog tag along with you.  Just remember that you need to set the pace for the walk, hike, bike ride, or whatever chosen outdoor activity.

Whatever outdoor activity you choose—walking, bike riding, etc., enjoy it and have fun!  It feels so good to be able to be outdoors and enjoy the warm fresh air.