A PH Story Continued

Part 2 by Eye Shaa Malik

A PH Story Part I

My story continues...

I normally visit my doc once in two weeks for regular checkup but my last worst hospitalization was on 6 April 2014. It left a mark on my mind and it brings tears in my eyes when I recall that day. I've got severe heart arrest at 3 am I was at hostel nobody was there to take me to hospital I was extremely breathless with hell pain in my heart. I was brought to heart center at 8 am next morning (that added to the severity of stretch of heart hole's muscles with insufficient O2 supply) by my roomie, I am thankful to God and then to her for saving my life. I was swooned afterwards and undergoing various treatments like O2, nebulization and injections repeatedly...

I don't know what happened then & when I revived my senses I found myself half-dead still ongoing spate of treatments. My family arrived near 4 pm I evoked my will-power and didn't heed to anyone , my doc said you are not in condition to go ,I insisted but I got breathless again and was brought to another hospital the same evening .... It was a severe jerk that I wasn't able to get up for approx. a 'month' but thanks to some good medical attention & I took my rehab seriously, brought myself to the level of fitness... It was spring and undoubtedly in these 12 years this "Crop-cutting" season aggravates my symptoms. During this turmoil I've written a poem "My scattered breath" that justify how my condition fully cox when you can't breathe nothing else matters!

              

            “My Scattered Breath"

        Night prevails to bring some rest...

        Even the birds flew to their nest...

       To sleep soundly is my quest...

       But being valetudinarian I am arrest...

       Spring's brutal to me ever, yet!

       Can't blame the crops that harvest...

       Once again I'll have to pass it like a test...

        Cox having "PH" is not a jest...

         Lots of fears, if it’s last spring lest!

          Dear lord! Waiting for you to manifest...

          The eternal heal that reveal the zest!

 My focus is to keep myself psychologically healthy. My parents have always told me that you are "RARE" not "SPECIAL" so my "expectation level" for care and affection from others is very low .......I cordially thanks my caregivers and try to return something to them (that can be a smile :)). I think when we are ill we can waste too much energy being mad or being glad about how people are caring for us, when we should be really there caring for others, our illness doesn't exempt from reaching out in fact, I think we are more accountable because we can understand journey better than those who have not yet taken it. I feel like now that I have PH I am aware of every my single breath to thank.  Never in my entire life anyone sympathized me because I never painted a sorry picture of mine and I feel that’s my success . Everyone and I mean each and everyone says this " You don't look like a patient " until unless I tell them that there is something wrong inside , my nails and lips give them a ill bit of clue rarely but I often hide it with some lip and nail colors..

                                                 

One thing for newly diagnosed patients with PH or any other chronic disease... Look! You are a higher, plight till last breathe, yes you are bearing up, but who isn't? In one way or other everyone is the part of any struggle. Never ever give up & keep marching forward. Everyone has to go one day, take your medication & rehab-process seriously, smile for your love ones and get out of dismal outlook and prove the world that you are a "WARRIOR”. Once you adopt things turn easy for you, HAVE A COMPLETE FAITH IN GOD. Keep your mind spiritually positive & patiently wait HE is the best healer, you all definitely be rewarded for this pain. He is aware of your struggle and the midnight sky and the silent stars have been witness of your devotion to freedom and of your heroism.

Generation Hope Goes to Boston

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Posted by Colleen Brunetti

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

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

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

Colleen with Jeannette Morrill

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

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

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

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

Another Love Story

By Kiara Tatum

 

February is American Heart Month, and it’s almost Valentine’s Day.  I don’t have a sweetheart for Valentine’s Day, but this year I do have someone in mind that I would like to show my love.  That would be me, myself, and I.  I’m always hoping that each year I will find someone to love me for me despite my illness, but I haven’t found that one yet.  Which doesn’t surprise me because how can I love someone when I can’t even love myself with PH.  So this year, I’m going to love myself. Sounds easy enough; however, with PH, I don’t always love this life.  How can I love myself when I don’t like my circumstances?  How can I love myself when I have to take medication throughout the day?  How can I love myself when I have to drag around supplemental oxygen?  How can I love myself when I have to change my medication pump every 3 days?  How can I love myself when I…?  So sometimes life can be hard and I just don’t want this life and I can’t love the person that is going through this journey.  But this year, I’m making it my goal to learn to love myself more.  Not just on Valentine’s Day, but each and every day.
To help I refer to the love experts… romantic movies.  The formula usually is boy meets girl; boy loses girl; boy gets girl back.  Within this scenario, there is always some conflict why the boy and girl can’t be together.  Sometimes the girl doesn’t even know the boy exists, or the boy is only a best friend to the girl, and the girl dreams of someone else that she is supposed to be in love with.  Well in this PH journey, the boy is actually yourself, and when you were diagnosed with PH you lost yourself, maybe you lost friends, your job, control, and your lifestyle.  PH is the conflict standing in your way to loving yourself.  So we have to find a way to get yourself back and that is the journey of love we are going on with ourselves.  The journey to win yourselves back and fall in love with yourself.  Here are 5 simple ways to love yourself.

1. Get to know yourself.  The best way to do this is to start journaling.  You are more honest with yourself when you know no one else is listening.  Using guided statements, quotes or questions such as what’s on my mind?; what’s missing?; what keeps me fulfilled?; what are my favorite things?; what is my life like now?; what makes me happy, smile, laugh?; who am I now?; list how you a wonderful person, list things you love, have a conversation with your 99 year old self, etc.  You can find more examples of guided journaling statements and questions online, CreateWriteNow or in journaling or books.
2. Spend time with yourself. It’s great to just have alone time.  I like to listen to music and dance, go for a short walk, watch a good movie on Netflix or On Demand, do something creative, or just think.  It’s great to know what makes you smile, laugh, and happy.
3. Create a personal visual board.  This is a collage of images or words from magazines, books, photos, or from any other materials that resonate with you.  Cut those images and words out and paste on a big poster board.  When finished, look at the board and see what it reveals about your personality and preferences.
4. Do something different.  If you are always doing the same thing, you might lose interest in yourself.  So try a unique or a different activity: take a yoga class, try a new hobby, etc.  You will start to reconnect with yourself and discover more strengths.
5. Redefine your life.  You have been diagnosed with a chronic illness, and it caused you to lose your past lifestyle.  You may not be able to work or attend college classes, but that doesn’t mean you’re not productive, not successful, or not valuable.  You have to redefine those words for yourself according to what your life looks like now.  You have to show yourself some compassion and not criticize yourself for your life not looking like it once did since your PH diagnosis.

I met me and knew me, but then I lost that old me when I was diagnosed with Pulmonary Hypertension.  By getting to know me and spending time with me the way I am now, it’s helped me to fall more and more in love with me and build my self-esteem.  That girl I stare at in the mirror is more than just a girl with Pulmonary Hypertension and a congenital heart disease.  Sure she has thin hair from the medication, and dark spots all over her belly from injection sites and tape marks.  Lips are dry and a bluish color, and she has to wear a nasal cannula that connects to oxygen concentrator.  That won’t change.  But she’s more beautiful than ever before because she’s got beauty that can’t be seen but shines from within.  She’s got strength, hope, faith and love.  She’s got strength that can climb the highest mountains.  She’s got hope that soars with the birds, she’s got faith that can conquer any battle on the field, and she’s got a love that dwells deep in her heart for herself and others.  She always has a smile and a positive presence despite the hardships of her life.  That’s who I love and I’m falling in love with me.

So sometimes it’s not about finding another person that you can love and fall in love with.  Falling in love with yourself and loving yourself more can be more empowering to you than you know.  This Valentine’s Day love yourself and spend more time with yourself.  Enjoy American Heart Month and Happy Valentine’s Day!

 

 

 

 

 

I Am What I Am Because of PH

By Kiara Tatum

The Latin proverb says, “Sickness shows us what we are.”  Like the proverb, pulmonary hypertension has taught me exactly who and what I am.  My life drastically changed since the onset of PH symptoms 7 years ago.  I graduated from college and started my career, and then my losses began: financial stability, friends, my home, my car, control and independence.  However, my diagnosis of PH has many positive outcomes as well as negative.

I’ve been on this rollercoaster ride of loops and upward and downward slopes.  Before my diagnosis, I thought I knew what and who I was: a licensed social worker, a daughter, a sister, an aunt and a friend.  I exercised regularly with a trainer and ate healthy food.  My plan in life was to open a private practice and focus on psychotherapy for adolescents with emotional and learning disabilities.  After my diagnosis, I had to overcome many challenges and obstacles.  I slept on a futon in my mother’s living room.  We moved to a bigger apartment, but then I shared a bedroom with my little sister and later-on, with my sister and nephew.  My income went from a good salary to less than half that, and then I had no income for months.  But I still had to pay medical bills, an electric bill, car insurance and other bills.  I was depressed, angry and felt like I was nothing.  What I didn’t expect was that this PH journey would be good for me.  

I learned what I am from PH,  I am strong;  I have the strength I need to get up every day and take medication, to deal with the not so good PH days, and to be okay with having PH.  The strength I gained from rebuilding my life, a different life.  No more sleeping on a futon or sharing a bedroom; because I moved to my own apartment and I sleep in my own room.  I receive Social Security Disability Insurance with Medicare and supplemental health insurance.  I also teach as an adjunct instructor at my local community college.  I may not be able to climb Mt. Everest, but I have enough strength to hike to Stone Church in Dover, New York.  This strength I have allows me to overcome any obstacle such as heart failure that PH puts in my path.

Kiara with mom, niece, and nephews

My faith deepened.  I learned to rely more on God for my strength and guidance.  His strength and power gives me strength and provides hope when I’m weak, tired, depressed and angry.  My priorities in life have changed from self-focused to other-focused.  I share my free time in service for others such as volunteering in my community, being a support group leader for PH patients, etc.  I also realized that I have more support than I thought, and I formed stronger bonds with family and friends.  My mom, sisters, nieces and nephews have been there for me through the hospital visits, doctor’s appointments, but also through the fun days of family outings.   My nephews and nieces carry those heavy oxygen tanks for me, attend my PH support group meetings, and we spend quality time together.  Staying in contact with close friends is important to me no matter how far away those friends live; Facebook and texting help.  I created new friendships, “phriendships.”  I met and talk to people with PH from all over the world, through PHA conferences, support group meetings, Facebook and even focus groups.  My “phriends” and I go through similar experiences, so we empathize with one another and don’t have to explain PH. 

A chronic illness changed my life, negatively and positively.  What about you?  What are some positive changes PH has brought to your life? Comment below.

Sometimes Plans Have to Change

By Kiara Tatum

Life doesn’t always go according to the plans, especially when you have PH.  You can plan for a great outing with your friends; maybe see a movie and have a nice lunch with your friends.  But with a chronic illness like PH, you may wake up that morning and feel not so good and have to cancel the planned outing with your friends.  Sometimes your plans just have to change.

I was recently hospitalized for five days, but I had lots of plans made.  I had a doctor’s appointment, meetings to attend, a meet and greet to prepare for at my church, prepare for the upcoming spring 2013 semester, a blog to write for PHA, and had to….  I had plans!  So of course when I started to notice that something was wrong, I ignored it.  I denied that something was wrong.  However, I needed at least one more day to get some things completed because I couldn’t stop just right yet.  But then my body knew it was time to go to the hospital, it was not letting me do anything.  I could barely walk from the living room to the bathroom without hugging the wall and feeling short of breath.  Well then I thought, I’ll go into the emergency room, get stabilize, and be out in and out.  That was doable.  So true because of these plans I had, I had certain things that had to get done before I could call ambulance.  So here I am ready to go to the hospital, and I’m calling around to people to ask if someone could come get the display board to finish it for me.  I figure if I couldn’t finish it; someone else could finish it.  I had everything laid out, so it would be real easy.  Well no one was able to do it for me.  And after an hour, more than an hour, I decided to call the ambulance.

I get to the hospital, and things don’t go according to my plans either.  I get put on fluids since I was dehydrated, and I get all the testing like blood work, chest x-ray, EKG, etc. completed.  The on duty doctor reviewed my results and says I need to be admitted.  Well that didn’t work with my plans.  So now I’m a little frustrated.  Okay so re-strategize.  I’m in the hospital a day or two which gives me plenty of time to be ready to teach for the spring 2013 semester, which is still doable.  After hours of waiting for a bed, I get admitted.  The ICU experience didn’t go according to plan either.  While in the ICU, what could go wrong at that moment did go wrong, so this prompted my PH specialist to have me transferred to his hospital as soon as a CCU bed became available.  So now I’m angry and furious.  I know I need to go, but this just really changed the plan. 

I have PH that drastically changed my life almost seven years ago, and now the one thing that has been keeping me afloat the last few months was going to be taken away from me.  I couldn’t teach if I was in the hospital.  Now my plans have to change again because of PH.  I couldn’t stand for it again.  These plans made were needed to make myself feel like I was productive and that I was like everyone else that worked and earned an income, and it was something that I loved to do.  I was angry, hurt and sad.  I started to panic, and I knew that I had to at least try to hold on to my teaching position.  I contacted the school and was informed that I could have someone cover the classes for me while I was in the hospital and the whole semester if necessary.  I also received a telephone call from a newly appointed dean, and he reassured me that whatever happened I would have a position at the school. 

So what can we do when PH disrupts the plans we have?  We can’t do anything.  Hardest lesson to learn, but it must be learned.  We have to just be okay with the fact that plans change.  If I wasn’t going to be able to teach this semester, then it was just going to have to be that I couldn’t teach this semester.  We must eventually accept and let go of the anger, the frustration, the let down, and accept that sometimes plans have to change.  Having PH means were going to have a lot, more than those without a chronic illness, of changes to our plans.  Those changes to our plans at first may seem to anger you, make you feel sad and hurt, but it will make you stronger and more creative.  It’ll all be okay.

A New Year, Let's Reflect!

By Kiara Tatum

It's a new year, and what usually happens at the beginning of the year is that people start to make new year's resolutions.  We feel that it's a time for new beginning, a time to start over, and a chance to make things better.  However, we still have Pulmonary Hypertension, and we still have a not so smooth journey ahead of us.  And a typical problem for everyone, regardless of chronic illness is that after a couple of months,--four months if your a little more dedicated--you stop working on your resolutions.  Going to the gym 3-4 times a week turns into paying for a membership that you never use.  I would tell you to throw away those resolutions; however, I know that they are important to us all and give us guidance over the next year.  What I would suggest is to look at some of these tips that may help you to accomplish those resolutions this year.

1. Reflect on last year.  Look at those resolutions that you developed last year, and give some positive and negative feedback to yourself: what worked well and what didn't work; did you learn or discover anything new about yourself?  Review the one's that you accomplished, and think about why those resolutions were accomplished.  Sometimes it's because they were realistic, clear, concise and rewarding.  Maybe those resolutions challenged and pushed you, but were within your limits to complete.  Then look at the resolutions that you didn't accomplish.  Were they unrealistic and too complex?  Were they too far beyond outside limits?
2. Know your strengths, weaknesses and limits.  I'm good putting together a lesson plan; however, I can't seem to keep my apartment organize.  I can walk two blocks without stopping; however, I can't do an hour Zumba workout. I can design a great calendar/schedule; however, I'm such a procrastinator that the schedule doesn't really help.  I'm sure over the years that you have discovered what your strengths are and what your weaknesses are as will as your limits.  So don't forget about them when creating resolutions.
3. Let go.  Sometimes we hold on to the past and that feeling we have no control over.  It's time to let go of it and move on.  If I'm holding on to the anger of having of PH, then I'm never going to be able to find out how much stronger I have become since my diagnosis.  Whatever has been said to you or done to you in the past; learn to forgive and let go.  Sometimes journaling about it the situation, writing a letter that you won't mail out, talking to person in an empty chair, or even crying it out can help you to release the feeling and finally let go of it.
4. Pick a word for the year.  It's a creative way to do New Year's resolutions, but with just one word.  This chosen word will be your focal point throughout the year, and it will guide you on your not so smooth journey. Read more at Create Write Now.  If my chosen word was Hope, then Hope will guide me throughout the year.  Whenever something seems to hard or challenging; I will remember to have hope and will get through it.

I hope this tips will help you through your New Year's Resolutions.  And remember just because it's a new year, and you have a fresh start; it doesn't mean that it will be an easy and smooth journey.  Throughout every year, we have our ups and downs, so just don't be too hard on yourself.  Learn from it and let go!  If you have tips you would like to share with others, please post in the comments.  Happy New Year!!!

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.

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.

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!

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.

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.