A Journey Not So Smooth

By Kiara Tatum

Kiara's Family On Path to Stone Church

I was noticing that over the last week there were more postings of people with PH venting and feeling down on the PH Family Facebook page.  Although I didn't post it, I also had a couple of low days last week.  And one day, I stayed in my bed all day long because I just couldn't face the day and wanted to hide.  This PH journey isn't a smooth, a steady or an easy path that allows you to simply take medication, and you will be cured.  It's an uneven, bumpy, rough and difficult path.

Kiara and her nephews

I was reminded of last summer when I went on my first hike since I was diagnosed with PH.  It was a place I wanted to go to for years.  I printed up the brochure in 2007, and I told my family and some friends that I wanted to go to Stone Church in the Town of Dover, NY.  Knowing I was on oxygen and I could barely walk a block at that time, I had to see it.  During my six-minute walk tests, I would have chest pains, dizzy spells, would have to slow down and hold my chest, so going on a hike to Dover Stone Church just seemed impossible.  But I wanted to do it.  So summers would pass, and I never went.  I knew I wasn't physically ready to go.  Then in the fall of 2010, I started Remodulin subcutaneously, and it gave me hope to reach my goal of going on the hike to Dover Stone Church.  In the summer on August 20, 2011, I made the journey. 

Stone Church Entrance

We had to drive up and around the mountain which presented thinner air as we got closer to the site.  I had to climb stairs, I had to cross rocky paths, I had to walk over slippery wet rocks, walk up a mountain, but I did it.  I slipped, but I didn't fall; my oxygen tank rolled the wrong direction, but I pulled it with me.  I had to let my mom hold my oxygen tank for me, but I kept walking; I had to stop for breaks, but I never gave up.  I had to catch my breath, but I had more breaths left and I reached the top, and I saw Dover Stone Church.  When I walked inside the cave, I knew my journey was complete.  I was so proud of myself, and my family was proud of me as well.  It was so beautiful and so serene.  Knowing what I had to go through to get to that point made the journey so much more meaningful and powerful for me.  I had the strength, courage, faith and hope I needed to take on that not so smooth journey to see the natural beauty of this world, and I did it!

Path to Stone Church

So sometimes you may want to give up because you feel like you don't have any more strength to fight, but hold on a little longer.  It's not going to be easy or straight, and you're going to feel depressed and angry sometimes.  Just remember there is going to be something--a medication change, an inspirational song, an encouraging word from a phriend, or anything--that will give you more hope, courage and strength needed to fight another day and another day to get out of bed, to take your medicine, to do the simple yet hard tasks of the everyday.  Also remember you are not alone; you have your family, friends, and phriends to help you through each day.  Have hope on this not so smooth journey!  And maybe one day, we won't have to fight any more.

Planning for College: Know your Rights (and Responsibilities)

By Colleen Brunetti

Having Pulmonary Hypertension can throw a few kinks in your plans, but it doesn’t mean things like college are now impossible. What it does mean is that you may have to do a little extra footwork to prepare for a major transition like college, or to adjust your current college experience to a new diagnosis.

There are many supports and legal rights put into place to support students with health related disabilities, and they fall under the Americans with Disabilities Act and/or Section 504 of the Rehabilitation Act of 1973. Under these two laws it is up to you if you want to report your health condition and request special supports, and it is the responsibility of the school to take certain steps to support these needs. But you have to know, and you have to ask.

The Federal Government has put together a very comprehensive guide on this topic, which can be found here: US DEPARTMENT OF EDUCATION

You may also find PHA’s other college planning resources helpful, found here: MAKE THE MOST OF COLLEGE WITH PH

Remember, PH doesn’t mean life stops. It means we adjust and find new ways to make things happen. Good luck with college!

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.