Sometimes It's PH!

Bringing PH Awareness Your Community

By Kiara Tatum

Doctors are taught in medical school that if they hear hoof beats, they look for a horse not a zebra.  Meaning if a patient is describing symptoms of shortness of breath, fatigue or other common symptoms, then doctors assume common ailments such as Asthma, Obesity or COPD.  However, we as Generation Hope PH patients know that sometimes it’s PH.  So it’s up to Generation Hope to spread the word about PH and since PH Awareness Month is around the corner in November, it’s time we take action.

 

With help from Yusetty Medina, Community Advocate Manager from Accredo, I set up an informational table at my local mall to hand PH pamphlets to crowds of people for PH Awareness Month.  The goal wasn’t to raise funds, but to raise awareness about Pulmonary Hypertension for early diagnosis.  I ordered the free pamphlets from PH Association and Yusetty brought informational brochures from Accredo.  There were also goodies to hand out: chocolate, candy and bottled water to key chains, PH Awareness bracelets, flashlights, pens, hand sanitizer and travel size Band-Aid holders.  Together we talked to many different people from the young to old about Pulmonary Hypertension.  This year, I plan to do the same, but with a little more help from my support group to have a bigger impact on the community.

Yusetty and Kiara at PH Awareness Event 2011

You can do it too.  It doesn’t take much time to organize an awareness event.  There have been a couple of Facebook events called “Show Us Your Stripes”, and that’s something that we can all do in November by posting pictures of ourselves, family, and friends wearing zebra stripes and posting pictures online and explaining to Facebook friends what the zebra stripes mean.  Another simple idea is setting up display boards for the month of November at your local community center, library, college campus, or wherever you can find a spot that will be seen by lots of people in your community.  You can also raise awareness through the media by telling your PH story with your local newspaper.  Additionally, if there is an event already planned in November, maybe you can have a table set up there about PH, such as a local school concert.  Or request an Awareness Month proclamation from your mayor and/or state governor.  There are other great ideas for you to get involved this PH Awareness month.  Check out PH Association at http://www.phassociation.org/AwarenessMonth2012 for more ideas.

I have said it before that the PH journey isn’t so smooth, but by each one of us spreading PH awareness to others, we can make a difference.  We can help others who may be experiencing symptoms of PH get the help and early diagnosis needed to stop the progression of PH.  Don’t let another November go by without doing something.  Take action!!!

No More Rebound Dreams!

By Michelle Joy Guerrero

Michelle Joy Guerrero

What was your dream when you were a kid? It was probably one of those grand things our parents  wanted all of us to be – to become a doctor, a lawyer, a nurse, a teacher, a politician, an engineer, a businessman. I dreamed one of those, too.  Ever since I was little, I’ve always wanted to become a lawyer, and a fierce one at that.  Later on I dreamed of becoming an essayist, a fictionist, and then I dreamed of being a visual artist, an art director, a creative director in a world-renowned ad agency.  We all have our own dreams, and more likely than not they do not differ from everyone else’s dreams. Only, at some point in our lives, we are challenged by the big question, “Can I ever do this?”

I had my open heart surgery when I was 16.  I had a congenital heart disease that kept me from keeping up with everybody else’s pace. After the operation I was free. I played badminton and table tennis.  I joined an Aerobic Dance class.  I was normal, finally.  And because of that I planned a lot of things.  I’d go to law school and then go to an arts school.  I had plans of moving out. I had plans of studying abroad, traveling around the globe, and learning different languages to experience different cultures.  I dreamed of being rich and getting my mom her own car, going on a shopping spree with my future nieces and nephews, renovating our house, and giving my sisters some travel gifts.  Until suddenly, I could no longer play sports or dance aerobics.  I could not even sit or stand still without having shortness of breath.  Suddenly, I was diagnosed with a life-changing illness called Pulmonary Hypertension.  Suddenly, I was facing something that has no cure.  My dreams started blurring, and I started asking myself, “Can I ever do this?”

Having a significantly diminished ability to dream and dream big is common among newly diagnosed PH patients.  There will be a time when you can come up with something you want to do, but you start questioning right away whether or not you can do it.  Sometimes you ask if your body will even allow you to strive hard for that dream.  Sometimes you ask if you even have enough time to reach your goal.  There will be a point in your life when all you can ever see vividly is today and tomorrow or the whole month, but you can’t see anything beyond three months.  Planning your whole life all over again is something your mind cannot react to immediately because of the limitations that you have, but then you have to.

There will be a time when we start planning on pursuing a new dream.  To others, they realize that it had been their calling all along.  To some others, it becomes a rebound dream, one that is not supposed to last a lifetime.  This rebound dream is merely a shot that will make one realize that he can still dream and pursue it, and that whatever it is, it’s going to be fine.

I’ve had one rebound dream before.  I dreamed of becoming something I could easily be and tend to forget everything else I had planned all along.  It seemed practical because I could still pursue a career I could easily do, yet it seemed outrageous because I should forget about who I ever was and everything I could ever be.  But still I tried as much not to think about the things I loved to do because they remind me of things I thought impossible.  But little by little my rebound dream kept reminding me that if I can see a future with a job I do not even like, chances are I can see myself better with a job I love doing.  And so I went back to things I really love and let go of the little details I do not need.  I went back to learning a beautiful craft and decided that this is going to be my future.

Our dreams, our future, are not necessarily ruined just because we have Pulmonary Hypertension. They are still our dreams and our future. The only thing that is changed is how we approach it because we have to make sure we prioritize our health as well. It does not really matter how fast or slow we get there; the important thing is we are being true to ourselves and we are making ourselves happy.

If you are one of the patients who still have a diminished ability to make plans and those who withdraw from their interests, remember that all this is merely an aftershock of your diagnosis. It will wear off eventually. Never ask yourself again the question, “Can I ever do this?” Tell yourself, “I can do this.” Chances are YOU CAN!

Breathing Fire: PH and Anger

By Kiara Tatum

Have you ever gotten so angry that you wanted to hit something or throw something?  Have you ever been so mad that you gave a tongue-lashing to someone?  Have you ever been so angry that your body felt so hot?  I’m sure I’m not the only one who’s been there, but we have every right to feel angry.  We have a chronic, incurable, life-threatening illness that has drastically changed our lives.  

I get mad at people who just don’t get it; I’ve been mad at someone for staring at me while I’m walking with my oxygen tank.  I’ve been angry at my mom when she asks me if I’m okay; I’ve been mad when I see another medical bill I can’t pay.  I get mad when I can’t walk at the pace of other people; I get angry when I have to cancel plans with friends.  I get mad when I can’t focus.  I get mad when I don’t have any more spoons left; I get angry when I have to spend a day in bed.  I get mad when I can't go to the club with friends.  There are probably more than a 1,000 things that cause me to get angry about my PH and how it affects my life.  

But behind that anger is sadness and depression, and I’m most angry with having PH and my body.  The pressures and frustration of having a chronic illness build up inside.  It’s so hard to have an illness where I can’t take an antibiotic to get rid of it in 10 days.  I wake up and I’m still in the same body that I fell asleep in the night before.  I’m still sick.  I get frustrated when I know that I used to be able to do something and I no longer can do it since my PH symptoms started.  I have PH.  It hurts my soul, and I cry out sometimes.  But it’s okay to feel anger, sadness, and hurt.  

But just because we have PH, doesn’t give us a free pass to explode on family, friends, or complete strangers.  My sister once told me that it was hard to live with me because she didn’t know how I was going to be from moment to moment.  It’s hard to deal with the anger, so use some of the outlets available to us to deal with it such as posting on the Generation Hope Google email group or Generation Hope: Young Adults with Pulmonary Hypertension Facebook page or share at a local support group meeting.  We can also talk to a friend, family, or professional; write in a journal; pray; listen to music; or punch a punching bag.  Continue to have hope and be positive.  Also, remember that we are not alone with this illness and anger.  A cure is burning up!!!

My First Time At Conference

By Kiara Tatum

 

Kimberlee Ford & Kiara Tatum

Despite being diagnosed in March 2006, this was the first year that I felt like I could really go to conference.  I could travel, take a plane and meet my phriends that have supported me through the years.  However, wanting to go wasn’t the problem; there were some challenges that I would have to overcome in order to get to Florida for the PHA International Conference.

Applying for the PHA conference scholarship was the first step and the easiest part of the traveling experience.  I was granted a scholarship; however, I wasn’t prepared for the extra cost.  I thought I was going to have plenty of funds from the scholarship, but the scholarship usage was explained, and I had to come up with more funds.  I thought my family was vacationing with me; however, my mom changed her plans.  I needed 4 LPM of supplement oxygen; however, my local oxygen company only supplied 3 LPM.  I needed oxygen delivery in Florida, but I used a local oxygen company in New York.  So you see all the dilemmas I had to experience, and I hadn't even left for Florida yet.  But even though I had these troubles, I still was determined to get to Florida for the PHA International Conference this year.  With help from my parents with extra money and transportation to the airport, a discussion with my PH specialist about decreasing oxygen levels while in flight, coordination with my local oxygen company with another company in Florida, everything was put into place.  

Kiara Tatum & Colleen Schnell

I was so excited about going to conference, but as the flight date approached, I became scared and anxious.  I had never traveled alone before, and now I was traveling alone, diagnosed with PH, and using supplement oxygen.  What if there was an emergency?  How would I handle it?  What hospital would I go to?  But I was determined to go.  Traveling there was okay if I don’t count almost passing out while waiting for wheelchair assistance to board the plane.  The flight was smooth, and I was able to watch a free movie, “This Means War” with Reese Witherspoon.  Loved that movie!  While sitting in our wheelchairs outside the airport waiting for the super shuttle to Renaissance Hotel, I met a fellow support group leader, which made the ride to the hotel very enjoyable.  Although I had three items confiscated at the Orlando International Airport, the return flight home was even better due to a kind and helpful woman who sat next to me.  

Kiara Tatum, Kimberlee Ford, Kia Allen & Tammy Lewis

When I arrived at the Renaissance Hotel and met up with good friend, Kevin Roberson, I finally felt relief.  My oxygen hadn’t been delivered yet, but I still wanted to go to the Meet-and-Greet and meet my friends.  Then I saw Tammy Lewis, Alex Flipse, and other friends that I had met previously.  Because we had never met in person before, I was very excited about seeing my good friend, Kimberlee Ford.  She and I had been talking for years on the phone.  When I finally saw her face, I had to touch it to make sure she was real.  And I was so excited to meet my other good friend, Kia Allen, who was bringing her husband and son with her.  I met people from PH Family Facebook page and there were so many other people that I got to meet.  But if I list them all, you will stop reading the blog.  It was the best feeling to be surrounded by people who were just like me – diagnosed with PH and full of hope.  It truly felt for the first time I wasn’t alone anymore.  Everyone describes the conference as a family reunion, and it’s so true.  These weren’t just friends; we are family.  

All the sessions I attended were informative, and one in particular was full of laughs.  The women’s only session was a blast.  Even though there were laughs, there were real issues that women of all ages who have PH have to deal with, and I’ve been avoiding relationships because of my illness.  Wearing oxygen tubing isn’t hidable, and I felt like I would be a burden on someone if we started a relationship.  But hearing some of the women’s stories was very inspiring, and I’m ready to start dating.  I also had the opportunity to be part of the speaker panel for the Words for Wellbeing session.  I shared how journaling and now writing for the Generation Hope Blog have helped me and empowered me in my fight against PH.  I was nervous, but everyone said they didn’t see it.  People gave me positive feedback, and they enjoyed the tips I shared about journaling.  

Kevin Roberson & Kiara Tatum

There was so much to do at the conference.  I attended the Support Group leader luncheon, and it was great to see so many leaders from different states and even different countries.  I went to the Generation Hope After Dark event and had a great time hanging out with friends.  I had a fun time visiting the different booths at the exhibits, from the makeup station to the photo booth station.  I may have spent a little too much time at the photo booth trying to get a decent picture.  The fashion show was so entertaining from the co-hosts to the models.  The opening ceremony speeches, the Power of One Dinner speeches, the Journeys Luncheon speeches, Scaling Mountains to Achieve Our Dreams Breakfast speeches were very inspiring and empowering.  There was so much to experience, and I wanted to experience it all.  I made new friends and grew closer to my good friends.  I didn’t get to go to Sea World because of tropical storm Debby; however, I did get to experience Thai food for the time with Joshua Griffis and Colleen Brunetti.  With the money saved, I was also able to buy souvenirs for my family at home.  

Kia Allen, Wendy Bondy, Kylen, and Kiara Tatum

I didn’t just want to go to the PH conference; I needed to go to this conference.  It empowered me and renewed my hope and faith.  I’m still so filled from the conference, and it has been over three weeks since it happened.  If you have never been to a conference, you really should see what you can do to get to the next one. You should talk to your doctor and your family and apply for a PHA conference scholarship.  I can’t wait until 2014 for the next conference; Indianapolis here I come!

Generation Hope After Dark 2012

By Brittany Riggins

Advisory Board Members

In 2006, I attended my first PHA International Conference in Minneapolis, MN.  I had only been diagnosed for about 9 months at that time.  While I had been attending my local support group meetings, I had yet to meet another patient even close to my age.  So at conference, I sought out the few other patients from across the country that were also in their 20's and affected by PH.   We bonded, spent a lot of the conference together and promised to keep in touch.  The thing that I couldn’t understand was that I had been continually told that pulmonary hypertension primarily affects women in their 20's and 30's.  So where were all the patients my age? Why weren’t they at the conference or the support group meetings?  Why wasn’t there some way we could all come together and help each other deal with this disease that was thrown at us at such a pivotal time in our lives?  Fortunately I wasn’t the only one seeing this gap in the PHA programming.  With the help of the wonderful staff at PHA, three other young adult patients and I were asked to be on the advocacy board for what would become Generation Hope in 2009.  And it was like we suddenly weren’t alone anymore.

Due to an unfortunate combination of pay cuts, long plane rides and general bad timing, I was unable to attend the previous International Conference in California.  It was the first conference that held sessions and programming just for the young adult group.  It broke my heart to be missing it, but after seeing all the photos from the Generation Hope After Dark mixer, I was so proud to have even had a small part in encouraging so many young people to come together at conference.  It was announced that the next conference would be in Orlando -- a much more reasonable trip from my home in Atlanta --, so all that was left was to wait two years.

As conference started up, I connected the names and photos I had seen so many times on the Generation Hope list serve and Facebook with the actual people.  I had done this in the past with friends from the PHA message boards, but it was so much more exciting this year.  We had a party to look forward to!  Generation Hope members were given metallic purple slap bracelets -- if you're in your 20's or 30's you remember what those are -- in their registration packets as their pass in, but by the end of Friday night you could see them shooting across the bar.  There was a chocolate fondue fountain, a selection of tiny delicious desserts, and even a specialty cocktail created just for the event.  The Generation Hope After Dark mixer was such a raving success that I never bothered to count how many patients attended, I barely took photos, and I didn’t get to bed until 2:00 am the next morning.  Seeing so many young patients from across the world in one place bonding and sharing stories was something I never thought I’d get to see.  There was easily 50 of us; all with the same concerns and hopes about life, love and fighting PH.  We had a presence and now a voice.  

The most surprising part of the After Dark event was our unexpected party crashers.  They came in the form of a high school aged mob.  A mob sounds like they had torches and pitchforks, but you know what I mean.  They were eager to try out the chocolate fondue fountain, or so I thought.  A lot of these kids have been battling PH a lot longer than some of us and will soon be joining us in Generation Hope.  While we were hesitant to let them in  -- do their parents know they’re going to be around a bunch of rowdy, drinking, 20 and 30 something --, in reality they are our future.  As much as we want to, none of us are going to be allowed to stay in Generation Hope forever.  Eventually, we will have to pass the torch onto this next group, who I feel like were elementary school age just a blink of the eye ago.  I look forward to the new energy and ideas they will bring with them.  

LtoR Chanda Causer, Brittany Riggins, Dalia Golchan,
Colleen Brunetti, Carl Hicks, and Jack Nino

I left this conference feeling more than inspired.  I left with a fire inside of me.  There are so many ideas running through my head of how we can make Generation Hope After Dark even better in 2014 -- it’s in Indianapolis if you haven’t heard --, how we as Generation Hopers can spend more time together at conference, and how I can see all these new friends without waiting until 2014.  Also on my mind is how we as Generation Hope can make a difference in the fight against pulmonary hypertension beyond the support we give one another.

Let's Get Together!

By Kiara Tatum

LtoR Mike MacDonough, Melanie Kozak, Jhenna Pacelli , Jason Kozak, Tara Suplicki, Kiara Tatum, Joshua Griffis, Collen Brunetti, Kevin Roberson, Braden Buehler, Kirsten Larson, Alex Castro Flipse & Picture taken by Debbie Castro (PHA/Director of Volunteer Services)

Planning for the first Generation Hope meet up started in the winter with the idea from Melanie Kozak and Colleen Brunetti.  They wanted all those who could get to NYC to come out and to have Generation Hope get together.  I suggested doing it during the warmer months because I know how difficult winter can be for me despite this winter being as a warm as it was.  I was really excited to meet some of the people that I known from Facebook.  Three days before the meet up, I had an emergency and was sent to the hospital by ambulance.  I really didn’t want to miss out on this gathering, so I prayed and hoped that I wouldn’t be admitted, and I wasn’t admitted.  I left the hospital later that evening with a prescription and instructions to rest for a few days.  However, I had to prepare for the meet up on Saturday.  I had to get my hair styled, so I did.  The medical emergency took a lot of energy away from me, but by Saturday morning I was ready to take the train to NYC to meet my phriends.  I looked forward to the meet up for months, and the lack of energy and an emergency hospital visit wasn’t going to keep me away from going to this. 

Kiara, Debbie, Tara, Kevin, Melanie

Weather was beautiful and I was anxious, but happy to be meeting up with phriends my age.  My support group members are older than me, and some of the patients have children my age.  So this meeting was important to find phriends that shared common interest with me and not just PH. First I met up with my NYC “tour guide,” Kevin, and he brought me to Ellen’s Stardust Dinner – Colleen’s choice in restaurant – near Time Square.  After two buses and a couple blocks of walking, we arrived. I was there amongst friends that I talked to on Facebook or email, but today we were in person.  So surreal!  We greeted each other with hugs and laughs as we waited to be seated at the diner.  Did you know that Generation Hopers are very talkative?  Well at least that day we all could be together and have a great time at the diner.  Enjoy the good food and company – great pick Colleen!  The wait staff sung songs from the musical "Rent" (Joshua Griffis's favorite musical) and "Mamma Mia", performed a Whitney Houston and a Michael Jackson number, and even did a great job rapping to Nicki Minaj’s "Super Bass".

Alex and Kiara

After brief discussion of what to do after we ate, we then headed to Time Square.  There were vendors in the streets, and we all shopped and looked around.   We had such an interesting time getting to know each other out in Time Square. Some of us – Alex Castro and myself – stopped and brought some jewelry.  And I’m not sure how many cups of coffee Debbie Castro had, but that girl loves some Starbucks coffee, and there are plenty of them in NYC.  While the man prayed for over me, Alex had my back just in case he decided to go pick pocketing or something.  And thank you to Melanie for coming to my rescue when the woman in the yellow t-shirt, who was mediating with other yellow t-shirt people, said to me that I could be healthy if I mediated.  Melanie gave a quick PH lesson – with a Jersey attitude – to the woman.  Using oxygen always seems to attract people of all kinds.  It’s hard to get used to the stares, but it felt great to have my new phriends around to support me.  It was getting late, and I know I had to get back to the train because I was running low on oxygen.  So I took the taxi with Jhenna and her husband, Mike to Grand Central Terminal.  We sat down and hung out at Grand Central before our trains arrived.  It felt so good riding home on that train.  Joshua posted on Facebook that the remaining phriends saw the musical Rent that night, one of my favorite musicals.  I wish I could have seen it with them, but you know that your life is controlled by your oxygen supply.

Kiara with Elmo

I really needed that day.  Being with other PH patients that are going through similar situations and your age was just perfect.   We may talk on Facebook, but it’s not real until you see each other.  It’s like you know you’re truly not alone.  That day brought more light to the darkness of having PH, it empowered me and I gained a little more hope, and now I’m more armed against my PH fight.  We already agreed to have another meet up possibly in October.  And maybe more Generation Hope meet ups will start popping up all over the world.

Young Adult Advisory Board: Driving Generation Hope Home

By Sean Wyman

Sean Wyman

During 2009 things were changing at PHA, and questions were being asked of the young adult patients on how PHA could better serve those who utilize their service. I was privileged to be a part of a focus group conference call with several young adults who have pulmonary hypertension, and we were being asked questions on how PHA could better serve us and others like us. I think at that moment was when things started to take place and soon after this conference call, myself and several others received emails asking if we would like to be part of the Young Adult Advisory Board for PHA. The goal of the Young Adult Advisory Board was to help develop programs for young adults and young professionals in their 20’s and 30’s.  Many of us have different needs than the children and older adult counterparts. Throughout the last two years, the Young Adult Advisory Board has helped bring forth the Generation Hope Google group, Facebook page, blog, and other resources for young adults with pulmonary hypertension.

Lindsay Nicol

Colleen Brunetti

 The advisory board consists of several young adults who are active in the community raising awareness and are advocates for pulmonary hypertension. Colleen, Brit, Lindsay, Sean (me), and our newest addition Josh have been working within our communities—online, locally, and beyond—to help enrich the lives of others that are much like ourselves, young adults that want not to be defined by our PH, but to inspire others to continue to fight and continue to hope. Colleen summed it up best when she said, “I helped start Generation Hope because I wanted to give back to the community and create a safe space where people our age could gather and share similar experiences.” Personally, I share the same sentiment, and I know that Brit, Josh, and Lindsay feel the same way. We work closely with Chanda at PHA to continue to provide ideas on how to improve PHA and Generation Hope services for young adults.

Brittany Riggins

Joshua Griffis

In closing, we on the Young Adults Advisory Board are here for you and always welcome comments and ideas. If you’re fortunate enough to be joining us at the 10th International PH Conference and Scientific Sessions, and you see us, let us know what you think. Finally, Colleen, Brit, Lindsay, Josh, and I would like to invite you out to Generation Hope After Dark on Friday, June 22, 2012 at 9pm. We hope that you’ll come out and meet with us and other young adults like you.  Rumor is a Special Generation Hope Drink will be availabe for purchase. We look forward to seeing you there!