Importance of a PHriend

By Kiara Tatum

Relationships are very important for young adults. We rely on our friends for their advice and thoughts on what to wear out, who to date, should I or shouldn’t I buy this scenarios and was I at fault for the argument dilemmas. We also need our friends for getting through breakups, arguments with our parents or boy/girlfriend. We met these friends because we went to the same high school or college, attended the same church, grew up together, lived on the same block, or have mutual friends. You may like the same activities, same music, dress in a similar style and have similar values, but do they have a chronic illness called pulmonary hypertension like you? Do they know what it’s like to wake up and have a bad day and you can’t walk from your bedroom to the bathroom without resting? That you can’t go to the gym, go to the mall, go to the movies, nor do anything fun because it hurts to breathe? Do they understand that just because you don’t look sick and don’t always feel sick that you are sick with a rare and progressive disease? That’s where a Pulmonary Hypertension friend (PHriend) comes in.

There are some things that even a close friend just won’t understand about having a life-altering illness that shapes how you live. We don’t want our illness to define us, but it’s now a vital part of who we are. I can call my PHriend at 11:30pm and cry about how I wish I could go back to work, that I wish wasn’t sick, that I feel like a burden on my family or that I just want to be normal. My PHriend doesn’t have to ask questions like what PH is, what’s a 6-minute walk test, or what’s an echo? My PHriend would understand, has probably been there before, and can help me get through this low point. A PHriend is a great to have because you can have common interests besides PH. My PHriend and I have similar taste in music, are the same age, have to deal with family and relationship issues, and have similar values. We are there for each other at anytime to get through this illness together.

My best PHriend lives more than 1,000 miles away from me, so we can’t hang out every day. We rely on the phone and Internet to stay in contact. I like to hear her Southern accent, and she says I have a NY accent which I don’t hear. We met from a PHA focus group for young adults via conference call, and we been PHriends ever since. One day we will meet in person, but it doesn’t matter if we never do. We have been there for each other providing each other with strength, hope and love. She’s such a blessing in my life. Everyone needs at least one friend with pulmonary hypertension to help them through the low points and to share those high points that only a PHriend would understand.

Staying Active with PH: Melanie Kozak

I was recently involved in a very interesting webinar called “Staying Active with PH.”  The participants were two nurses, another pulmonary hypertension patient and myself.  The nurses were extremely educational talking about pulmonary and cardiac rehab and how exercise can be beneficial (following discussion with your doctor and when done in a controlled setting).

For my part I decided to talk about things to do when you aren’t feeling well enough to exercise.  I do understand exercise is important when you can do it but here is my list of the things I enjoy doing to remain upbeat and active on my bad days.

• Spending time connecting with my PH friends online
• Playing games online
• Going to bingo Tuesday nights with my aunt
• Going out with friends to dinner, the movies or just hanging out (I make sure my friends know my limitations in advance!)
• Shopping whether it’s going out or shopping online
• Cooking and trying new recipes
• Spending time with my husband … can be playing video games, watching a movie at home or just talking
• Going out to eat
• Redecorating my house (okay so I just come up with the ideas and hubby does the work!)
• Traveling
• Scrapbooking my travels and friends/family
• Reading
• Volunteering for PHA:

-          Working on the PHA patient-to-patient support line

-          Running two support groups and starting a third support group

-          Attending other meetings in my area

-          Writing for the Generation Hope blog

-          Helping out with fundraisers for other PHers

-          Moderating Generation Hope in Action

-          Advocating for PH

-          Creating awareness through videos

-          Connecting with other young adults to help them become more active

 

These are just some of the things I do.  As you can see a lot of my time revolves around PHA!

So what do you do to stay physically active?   And what do you do on your bad days?

Melanie Kozak: My Experience of Vacationing with Pulmonary Hypertension

In September, my husband and I went on a cruise to Bermuda for our one year anniversary.  I was a bit nervous as I was on I.V. medication at the time, and figured I would set off every scanner and security would be alerted.  Thankfully I was very wrong!

Before boarding the ship, I passed through security with my medication.  No one even stopped me: I was happy already!  Then, onboard, we requested a sharps container which was no big deal at all.  We were able to mix in the room and use the mini-fridge for the medication.  As for the ice packs, we went to the infirmary and advised them that we needed to keep my ice packs frozen.  They didn’t ask why.  They just did it.

On arrival in Bermuda, I was a little anxious about going through customs.  However, we moved through to the island without any hitches!  We rented a scooter that my hubby drove to get around the entire island so I didn’t have to walk everywhere and waste my energy. We found some great pink sand beaches where I could actually go waist high in the water without anything getting wet.  It was so much fun.  We even went to a beach that had roosters walking around.  Now that’s something I’ve never seen!  We visited the aquarium and zoo.  Both were great because they were small and had plenty of places to stop and sit.

Getting back on the ship was a bit of a hassle the first time.  They put my back-up bag through an X-ray scanner and kept insisting I was carrying needles.  Which of course I wasn’t!  We tried to explain pulmonary hypertension and the medication to them.  Eventually after 5 minutes of talking they let us back on the ship and after that never bothered us again. 

Back to enjoying the vacation and how relaxing it was!  We window shopped all of the expensive stores.  We even went to a few more beaches and some of the forts on the island.  We took a ride to the lighthouse but I wasn’t feeling up to climbing 200 stairs to get to the top.  Another great time was at the science museum.  It was great to be inside for a bit after all the heat we were dealing with.  Plus they had this amazing collection of shells.  There was also a shark attack cage where they did a simulation of what it would be like to have a shark hit the cage.  Being the brave girl I am I was the first to jump in.  It was hysterical because I didn’t know the cage would move when the fake sharks (on film) hit it and I literally jumped.  Then I started giggling because everyone was looking at me.

As we sailed home we only had one issue.  I didn’t bring my diuretics because I had been taken off them the previous week.  I should’ve known to bring them but you know how it is trying to pack everything…  So I went to see the ship’s doctor and I basically just told him I have PH, explained it to him and showed him my legs.  I told him the only thing that would help was diuretics. He said “apparently you know more about this disease than I do” and just gave me a few pills.  I walked out of there laughing!  Did I really just tell this doctor what to do and he listened?  It was great.

I even got a massage on board.  No worries there either.  Just showed them the pump and line and they worked around it.  The massage therapist never made a big deal over the pump she just told me to place it where I felt comfortable.

I think I’ve decided that for my next vacation I would really like to cruise again.  It was easy with my medication, a lot less stressful then airport security and it was so relaxing!

Have you vacationed recently? Where did you go and how did you manage your PH?

Finding Your Voice

This year I’ve been learning a lot about finding my voice. Not my singing voice, that is reserved for solo car rides and the occasional group karaoke.  No, I mean my PH Voice. The voice that gives me the power to make a difference.

See, for the first year or so after diagnosis, I didn’t have much of a voice. I had a case of nausea from trying to deal with all the drama that PH brings, but wasn’t doing much about it. What could I do? I had this disease and it was supposed to side-line me before too long.

But then Generation Hope came along, and I realized that I had a lot of ideas of what I could do, and we as patients as a group could do, to make our experience (and ultimately then our outcome) with this disease better.

I found my gift is talking and writing. Other people have gifts in fundraising. Good for them, because while fundraising is the obvious way many people think of for making a difference, it isn’t my gift. And that’s okay, because we need people to put on incredible fundraisers and we need people like you to do… well, whatever it is you do.

So I started talking, and I didn’t shut up. Haven’t shut up, in fact. And the crazy thing is, people are listening. People at the PHA listen and when patients have ideas and wishes and hopes, they do everything they can to make them come true. Friends and family are listening. Because I’m talking, they better understand what PH is and some have stepped up to really do amazing things for our community. Even my state is listening, because I had a chance to go on Connecticut Public Radio and participate in an interview with Rev. White from PHA and Dr. Trow from Yale. 

You find your gift, you find your voice, and people sit up and pay attention.

What’s your gift? My sister is a hobby photographer, so she started Amharc Photography and donates a significant portion of her proceeds to PHA. My friend Sam is a nurse, and she donated her skill and know-how to help me write an article on talking to your kids about your disease. My phriend Kimberly has a gift of bringing people together. The facebook groups she’s started online have grown by leaps and bounds in a matter of months. My phriend Stu has the gift of networking. Want to know what’s happening in the PH Community? Who needs a helping hand or a round of applause? Ask Stu! Jack Stibbs has a gift for I don’t even know what exactly, but the man has raised over a million dollars for PH through his annual fundraiser, and that’s nothing short of amazing. Carl Hicks has the gift of compassion. Even after he lost his daughter Meghan last year, he continues to stand by us and fight.

I could go on and on naming people who knock me out on a daily basis with what they put in and accomplish for us. The people in our community are incredible, and if you’re a part of that, you have something incredible to offer too. What is it?

Put Your Headphones On

Getting Through Those Down Days

Living with pulmonary hypertension is like being on the Kingda Ka roller coaster at Six Flags as you're propelled by a hydraulic launch mechanism to 128 miles/hour in two seconds. When you first receive diagnosis, it's an immediate life adjustment. Being unable to do certain activities like swimming, hiking, working out in the gym or walking the mall, that other young people our age take for granted can cause stress, frustration, sadness, anger and other feelings. We have great "sun shining" days, and there are those "stormy, cloudy" days. Here are some pick-me-ups for getting through those down days:

1. Put your headphones on. Listening to inspirational lyrics can get you through the not so good times. One of my favorite songs on my playlist is "Skyscraper" by Demi Lovato. I put this song on repeat until I feel the words in this song:

You can take everything I have

You can break everything I am

Like I'm made of galss

Like I'm made of paper

Go on and try to tear me down

I will be rising from the ground

Like a skyscraper

Like a skyscraper

It's a great to have a preset playlist ready to go during your down days, so that you can just go to it and start to play it as soon as you feel a storm brewing. I usually will sing out the song loudly and dance around my room. It's such a great release for me.

2. Get creative. Start a journal and don't worry about punctuation, grammar, spelling, and neatness. Just write it down! You can even draw, paste pictures or words, or doodle. If you don't know what to write; you can write a letter to someone, or ask yourself questions: what was a low point for me today, what makes me sad, what makes me happy, or if my life could be any way I wanted, what would it look like? It's your journal entry to express how you feel, so do it any way you want.

3. Get focused. Guided imagery is relaxing and healing that uses your imagination to direct your focus. Find a quiet place to sit with no distractions around. You can sit with your legs criss-crossed on the floor or sit in a comfortable chair. Put your hands palm side up on your legs and close your eyes. Take a deep breath in for a count of five, hold for a count of five, and release for a count of five. Repeat a few times. Start relaxing each part of your body from your head down to your toes by focusing on that body part and relaxing it. Now image you're on a beach; you feel the sun shining on you and can hear the waves crashing into the rocks. You can feel the sand between your bare feet as you're walking down the beach. You are safe and at peace. You are relaxed and when you feel like you can open your eyes again; then do it. This a great way to refresh and re-energize yourself.

4. Get it out. If you need to cry, scream out loud or into a pillow, punch a punching bag or a pillow, or a combination of these things; then do it. But limit the amount of time you stay in that place. I give myself no more than 10 minutes to cry and scream, and then I'm done. I can't stay in that dark place, and neither can you. So just get it out, and move on to some of the other ideas for getting through the down days.

5. Call a phriend. No one can truly understand what you're experiencing, so sometimes it's helpful to call a PH-friend that can listen and identify with how you're feeling. That phriend has been there before and can help you through a tough time.

I know it gets difficult to always be hopeful, positive, happy and smiley, so don't be so hard on yourself when a bad comes your way. Check in with yourself on a regular basis by asking how am I really doing today. And when you feel a little down, do one of the pick-me-ups. Feel free to share some your own ideas here with other GHers.

Share your PH Video Story!

Please enjoy the latest Generation Hope in Action (GHA) video from Sean Wyman, as he discusses Tips for College with a Chronic Disease.  GHA is a subgroup of Generation Hope that strives to raise awareness, advocate for the cause and increase education for young adults living with PH. If you are interested in social networking, civic engagement or letter writing, we would like to hear from you.  Currently, we are planning several video messages to share with the Generation Hope community and their social networks.

Are you asking yourself, “What can I talk about?”

• Tom Lantos Pulmonary Hypertension Research and Education Act of 2011
• Dating with PH
• Adoption and PH

• College life and PH

• Working and PH

• Managing insurance and PH

This is a fun and easy way to educate the general public about living with PH as a young adult. If this sounds interesting to you, I would like to invite you to share your story!  PHA is happy to loan you a flip camera to make your video message.  For more information, on how to get started, please contact Chanda Causer at PHA.

A New Year, Get Active!

It’s the start of another year, and most people are working on the traditional New Year’s Resolutions: eat healthier, go back to college, change career, lose weight, work out more … you know, the usual resolutions! But those of us with pulmonary hypertension don’t always have the same priorities as others. One of our top priorities is to remain active, even though, the simplest task can be difficult. But there is a way to get active this year that’s a little different from the norm. You can start your new year by becoming involved in the community that surrounds you.

There are many different ways to get active in the community. Why not start with your local PH support group? You can co-lead a support group, help with getting sponsorships for meetings, make telephone calls to other members or local PH doctors, help with topic ideas, get speakers for your support, help with a PH awareness event or fundraiser, and much more. And if there isn’t a local support then create your own support group. PHA can help you get started on creating a support group, spreading the word to other PH patients in your area, and help you maintain your support group. For more details visit PHA.

I started my support group in November, 2008 because it was over two hours to a support group, and I had a chance to give back to the PH community and stay hopeful. PHA helped me to get started with topic ideas, leaders training webinars and information to maintain my group. Through my support group, we have had PH awareness events from participating in a parade to setting up informational tables. It has been a wonderful experience that keeps growing and growing.

If you want to try something different outside the PH realm,there are always not-for-profit agencies. Most non-profit agencies survive on the help of their community volunteers. Generation Hopers can make a difference in the lives of the people in their community or to a special cause. You can work with the homeless population in the soup kitchens serving or cooking meals or volunteer in your local hospital and nursing homes. Sometimes sitting with other patients in the hospital or reading to the elderly for a few hours a week can be really fulfilling. You can even volunteer at your local library, domestic violence shelter, youth shelters, and so many other places. If you need help, contact your local United Way agency for more volunteer sites.

I recently joined a board of a non-profit agency’s new youth program in the local high school, and I have impact on the curriculum development, community events, advertising of event, fundraising ideas and much more. I’m so excited to get more involved in this great new program this year.

Where I dedicate most of my time and energy is at my church. I do this because it gives me the most spiritual and emotional fulfillment, and gives my life purpose and meaning. I joined my church’s Website Ministry and Youth Ministry. I love the Website Ministry because I do most of the work from my home computer and I use the least amount of energy. I’m able to serve God by sharing information with others without ever leaving my home especially on not so good days. But I wanted to do more and I wanted to serve God deeper, so I joined the Youth Ministry. Working with the Youth Ministry allows me to minister to the youth of my church in different ways. I can be a resource to the local youth and help with coordinating youth program, events and activities. I find it challenging, but I love to learn more of how I can help the youth today and serve the Lord.

Life is more than your PH diagnosis, so don’t let your illness stop you from anything. Get active this New Year! Look at what you would like to do and your strengths, and then match it to what surrounds you in your community. You can make a difference. Getting involved and volunteering in your community keeps you active, gives your life purpose and meaning, and empowers you with hope.