What Are You Eating?

By Kiara Tatum

One of the many hardships when dealing with Pulmonary Hypertension is the diet and nutrition.  As young adults, we tend to be on the go and just grab something that's quick and easy.  However, as you are aware, most of us have to restrict our diets to either low carb diets, low sodium diets, and we have to watch our vitamin K intake.  It's uncomfortable to be at out with friends knowing that you can't eat and enjoy majority of the foods listed on the menu.  Since the holidays are upon us and many of us have been eating since Thanksgiving, I would like to share some tips to eating that have helped me to watch my sodium levels during this holiday season.

1. Limit your fast food.  As I have been doing my holiday shopping, I have been out for hours.  I try to eat before I go out and bring a granola bar with me.  This way I'm not eating at fast food restaurants while out and about.  Although if you do have to eat out, look at the nutrition menu for the restaurant.  I find that a hamburger and small fry no salt is high in sodium; however, not as bad as Chinese food or a cold cut sandwich.  If you can eat one slice of pizza, then you can also do that as well.  As a drink for each meal out, get a bottled water.  No extra sodium to worry about counting with water.

2. Don't add salt.  Don't use the salt shaker after a meal has been already cooked.  And if your cooking your own meal just don't add salt.  In fact, I stopped buying salt years ago.  I only use Mrs. Dash to add flavor to my foods, and I don' miss the salt. Also cooking with onions and peppers as well as different fresh herbs adds flavor to your food instead of salt.

3.  Say no to processed foods.  This means no mac and cheese, flavored noodled soups, flavored rice, etc.  And don't put cheese on your burger or your sandwich.  It will save you a lot of sodium. A slice of cheese can be almost 340mg of sodium alone.  There are some snacks you can find that have no or little sodium.  I found potato chips that have 15mg per serving of sodium and with a sandwich and a bottled water, I have very filling and tasty meal.

4.  Do your own cooking.  It's hard to cook especially if you're only cooking for one person, but leftovers are good if probably stored.  Using meat that isn't already seasoned or meat that isn't already cooked is best since most of those meats will have higher levels of sodium.  I've also found ways to make a low sodium pizza meal that isn't too bad.  Cooking my own meals allows me to be creative and learn more about cooking healthy meals that my eyes, taste buds, and stomach will all find savory.

5. Read food labels.  It's very important to read food labels for the amount of sodium that's listed.  This will help you in all areas of nutrition and eating healthier not just with sodium levels.  I found a spaghetti sauce that's 40mg of sodium per serving.  So with whole wheat spaghetti, ground beef and spaghetti sauce, I have a meal that's about 120mg of sodium.

6. Use a smaller plate.  If you are going to a holiday party or dinner at family's home, then ask for a smaller plate.  Especially since you won't be sure what was added to the meal for flavor.  Most plastic plates are smaller than a dinner plate, so if they are plastic plates, then you should be okay.  And don't pile up your plate with lots of food.  If you put food all over the smaller plate, then your eyes will think you have a lot of food.  Either way your stomach will get nutrients and be full.  And don't go back for seconds.  Wait 2-3 hours before eating again, which means no dessert right after you eat dinner.

These are just some of the tips that I have learned over the last years about eating healthier and keeping low sodium levels in mind.  For more information about pulmonary hypertension and diet and nutrition visit PHA website.

Life ... and Death

By Michelle Joy Guerrero

How bad could death be?

Life.  Death.  I've never tried looking at these as two intertwined points in our lives. I've always thought that they are two separate dots: one being the starting point, the other being the end point.  Never did I consider thinking about that one straight line connecting the two.

When I learned that I have this disease, death became my monster.  I feared that it may be too close, or, if not, this disease might be an end point stretched well enough to make a dash – a prolonged death, a lifetime uselessness.  I feared that I may not become anything but a parasite.  I spent 3 sleepless nights thinking about how my life would unfold from then on, and then a lot more days in denial that this has no cure.

But there are things we have to accept, and the first one of them is the fact that Pulmonary Hypertension has no cure and that, second, in the natural course of things we will die from it.  It’s only after that time of acceptance that we can really move on with life.  It’s only after we stop fantasizing that we will all be cured from this that we can clear our minds and think about how we want our lives, to be rewritten by us, and not by this disease.

With this disease, we turn 180 degrees and change our lives in an instant.  It’s sometimes one of the things we believe to be negative, because we have to lose and quit a lot of things.  But death has its own beauty.  We live our lives thinking that soon, all that we have may just disappear: our careers, our independence, our active lifestyles, our adventures.  All the things we have now and all the things we want to have later, will go on the same day our hearts and lungs give up.  But once we think a little deeper than all these worries, we discover that the only thing that we worry about is life.  We think about how we would all live despite having a disease that threatens us.  We start to lose interests over things of material values, and instead start living  a life we want to look back to on our death beds.

If I’m going to die next year, do I have to cry for a year or run away from the fact that I am indeed dying?  What do I gain if I cry?  Does life become better if I run away from it?  I gain nothing, and life does not become sweeter if I run.  It only becomes worse, and my condition will only worsen.

Everyone dies.  Even the richest man dies.  Even the greatest doctor dies.  The only difference between everyone’s deaths is how much one is prepared for it.  But how do we prepare for it?  We live in the moment.  We pursue careers we want to pursue.  We spend time with people we love.  We read books we've always wanted to read.  We listen to music.  We go out and get to know our neighborhood.  We watch movies we used to have no time for.  We tell people how much we love them.  We say sorry and thank you to people that deserve them.  We laugh, and we laugh harder.  We do things that will be good for our body.  We eat proper meals with our specific diet.  We exercise to keep us fit.  We take our medicines on time.  We sleep well.  We live our lives thinking and making sure that we don’t have regrets floating in our heads when it’s finally our time to go.  We do things that make us happy, and we do all the things we could to make sure our disease does not ruin our lives.  We live ensuring ourselves that when that time comes; we peacefully say it’s time.

I used to fear death, until I came to think that it’s too shallow to look at it as the last day everyone refuses to face.  Although it had always been the end point, the only thing that really matters is how beautifully and smoothly we've drawn the line from start to finish.  And although we know that there will always be an end point in the future, we are never really sure how close it is.  So go on, draw the line beautifully until you reach the end, or, better yet, draw the line as beautiful and long as you can so that when the day comes that PH finally has a cure, you can simply draw over that point and move the final point much, much further.

PH Awareness Month Continues

By Sean Wyman

With November here, social networks and support groups are bustling with discussion of what people are doing to raise awareness for Pulmonary Hypertension Awareness Month. If you didn’t know already, November is Pulmonary Hypertension Awareness Month, and is one of the greatest times of the year in my opinion. Though many people raise awareness for PH throughout the year, this is one time that globally the PH community unites and goes forward to teach as many people like politicians, health care providers, and their local communities about our rare lung disease and raise awareness worldwide.

There are many ways that you can get involved with raising awareness for PH this month, and you can see many examples by contributors in Generation Hope already. Colleen Brunetti has coordinated a Zumbathon on November 9^th. Also, Alex Flipse (Maryland) and Jen Cueva (Texas), both members of Generation Hope, have already gone forward and received proclamations from their cities and surrounding. If you’re interested in getting a proclamation from your area, you can find the easy steps and templates for the official paperwork on PHA’s website.

Other individuals have used their support groups to put on PH Fun walks and have raised awareness that way. If you are doing a major activity, utilizing the media is a great way to raise additional awareness. A guide regarding how to contact the media about PH and your events is enclosed later in this entry. However, really, ways to raise awareness for PH are only limited by your imagination, so let your imagination go wild! Another example of PH awareness is Alex Flipse’s “PH Warrior” photo’s that she has been making this year. Any inspirational image you can come up with and share on your social media (Such as Twitter, Facebook, Myspace and so forth) is a fine example of raising PH Awareness!

Other people, like me, are doing even more off the wall things. Last year, at the very end of Pulmonary Hypertension Awareness Month, I created a video giving examples outlining ways to raise awareness for the condition throughout the year. This year, I am taking it a step further, this year I am doing a series of shorts that I am calling The Adventures of PH Man. Stay tuned I promise to make it as enjoyable and relatable as possible. Also, going to school at a health science university, I will be in contact will be in contact with the President of the university and he also will be on board with raising awareness on campus, especially since WesternU has graduated a fellow Generation Hope-r and currently has one enrolled here. The possibilities are limitless!

If you’re interested in raising awareness through the media the PHA has plenty of guides to help you raise awareness. Further, there are plenty of people at the PHA that are willing to help you raise awareness. If you are interested in contacting the media to raise awareness check out the Media Guide which can be found on PHA’s website.

Other easy things that YOU can do are post meaningful status updates in your social networks (Facebook, Twitter, Myspace, etc.). Tell your friends, family, and followers what it means to have PH. You’d be amazed at how fast things can go viral and be shared through these outlets. Share the “Sometimes It’s PH Campaign” on your social networks or links to something that you find meaningful on PHA’s website. Just about anything is possible! As William Arthur Ward said, “If you can imagine it, you can achieve it” and when it comes to raising awareness for PH throughout PH Awareness Month, and after imagine it, dream big, and in the words of Nike “Just Do It!”

If you have questions, comments, or are interested in discussing your ideas, I welcome your emails at Sean@PHAmentors.org.

Please Understand...

By Suzanne Kenner

 

Having Pulmonary Hypertension means that many things change. Just because you can't see the changes, it doesn't mean they aren't real.

Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...

...These are the things that I would like you to understand about me before you judge me...

I am scared. I don't know what the future holds for me. Will I end up dead or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. PH has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry, please understand it's PH I am angry with, not you.

Please understand that having PH doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit, I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. PH has affected my lungs and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go out with everyone else, but it hurts when you exclude me. Maybe I can't do what everyone else can.

Please don't tell me you know how I feel. You don't! Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain. Even on a good day, I feel like you do after you have run a mile. Please keep that in mind.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years.  PH is a rare disease.  Even if I was only diagnosed recently, I can't be miserable all the time.  In fact I work hard at not being miserable. So if you're talking to me, and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. There currently is NO cure for PH.

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.