Looking Back and Moving PHorward: PHighting to Breathe for 10 years: Part 2

On Sept. 6, 2013, I officially achieved "Long-term Survivor" status. To mark the anniversary, I decided to retrace my steps through my old college campus where I was "knocking on death's door." Now that I am "better than ever before," I wanted it to sink in just how far I have come. What follows is part 2 of my commemorative trip down memory lane. To read part 1, see yesterday’s entry.

9/6/13
From here, I go to the art building where I "inexplicably lost consciousness." This eighth passing out episode is where the "official" diagnosed PH journey begins. I keep realizing I never counted those years pre-diagnosis until this anniversary ...

I DID IT!!

The hill that was almost literally the death of me was barely an issue. Campus is quiet; no one else is around. Total "de-ja-vu" feeling – remembering how I was walking right along the concrete columns, how I grabbed onto every other one, then every one to support myself. I was SO out of breath. Then it all happened so fast: unbelievable burning in my chest, black spots, couldn't hear my friend Cassandra finish her sentence. Then, the world went black.
 
By the way, I'm writing this part while sitting on a bench right where I passed out.

Cassandra must have called 911. When I woke up, I was on my back surrounded by medics. I remember being lifted into the back of the ambulance but being so out of it. By the time we got to the E.R., I felt fine. Yet again, I was frustrated and scared, but physically, I felt fine. I let them do blood work but refused any more tests. I had them all done before, and they always came back normal. I couldn't stand to hear another, "I don't know what's wrong with you."
 
This all happened the Thursday before Labor Day. The local cardiologist did a T.E.E. (Transesophogeal Echocardiogram) on Friday. The following Tuesday, we were at an out-of-state PH center where a right-heart catheterization was scheduled for the following week. In the meantime, they sent me home on continuous oxygen.
 
After the cath, I passed out on my way to the bathroom. As I regained consciousness, I was being wheeled into the I.C.U. where I stayed for about a week. And we were off and running. (Wow, poor choice of words, but walking at all sure felt like running.)
 
A lot more is coming to the surface, but it’s almost time for me to take Tyvaso. I need to start walking back to my car. I feel physically really good. I'm glad I did this. Sitting in the spot where I nearly died, feeling calm and conscious. My breathing is fine, and it's beginning to register just how far I've come.
 
Tore out a journal page, wrote a note and left it on the bench. I wanted a symbolic way of acknowledging the fact that I almost died in this spot.

The note said:
"Pulmonary hypertension – A rare, progressively debilitating lung disease that causes right-sided heart failure. Arteries in the lungs are constricted, making it increasingly difficult for the heart to pump blood to the lungs. The whole body is oxygen deprived. You are CONSTANTLY short of breath. A handful of medications can slow the progression, but today there is no cure. At some point, lung transplant may be an option for some patients.

I passed out – right here – seven years ago. A few days later, I found out I had had PH for the past three years and was now ‘knocking on death's door.’ I was 19 years old. Today, I am officially considered a long-term survivor. Please go to www.PHAssociation.org.”

By walking away, I was symbolically leaving the past behind. And if anyone does find it, it's a little bit of PH awareness, too. I felt very "light" walking away from that spot, very free. Classes started letting out, but I didn't turn around to see if anyone found my note. I got what I came for.

I can already hear that nagging, anxious voice saying, "Someday, you'll be back at that point. The disease WILL progress, eventually." But even if just for tonight, can that voice PLEASE be silenced? Let me just relax, physically and emotionally. 

I'm hoping that having officially reached this milestone, I will be able to keep "getting to know myself" beyond just "the girl with PH." I hope it will get easier as time goes on, provided I remain stable like I am now, to emotionally deal with, accept and move on from everything I have been through. I've been in "strictly survival mode" for so long. I'm only just beginning the emotional healing process.

The past 10 years have been one hell of a ride in every way imaginable, and then some. I still can't believe this: I AM a "Long-term Survivor." 

I am a PHighter.
I am a Survivor.
I am PHenomenal.

We ALL are.

PHenomenal Hope. PHenomenal Courage. Every breath. Every day.

Looking Back and Moving PHorward: PHighting to Breathe for 10 years: Part 1

It started out slowly, getting out of breath going upstairs or running laps in gym class. They said I had asthma. A year later, I began passing out. They said I had epilepsy even though my "unexplainable losses of consciousness" didn't fit the definition of a seizure. Eventually, I was gasping for air walking from one room to the other. After three years, I was finally correctly diagnosed with PH. I was 19 at the time and was "knocking on death's door."

That was seven years ago. I went from "don't get your hopes up" to embracing my "new normal." Three years later, the disease progressed. In just five months' time, "stable" was replaced with "heart failure" and "borderline kidney failure." Then, after transplant evaluations, I improved to "better than ever." Of the 12 drugs currently on the market, I've been on seven.

On Sept. 6, 2013, I officially achieved "Long-term Survivor" status. I decided to revisit the college campus where I was "knocking on death's door." I wanted to retrace my steps – and the many stopping points along the way – from the psychology building up to my dorm. Everyone else's five-minute walk became my 45+ minute ordeal. I also planned to walk from my dorm to the art building where I passed out for the eighth time. This was finally the turning point that brought us to the PH diagnosis. Now that I am "better than ever before," I wanted it to sink in just how far I have come. I was also hoping to quiet the lingering fear that this stable and, dare I say it, good "breath of fresh air" is all just a temporary, albeit wonderful, dream. It worked.

What follows is part one of the journal entry I wrote as I walked that day:

9/6/13

Long-term survivor TODAY. Weather is perfect.

In the bottom floor lounge of the psychology building writing this. The elevator was my first rest stop. Most days I was able to at least make it that far, still feeling okay. Well, here we go …

My second stop: right outside the front doors. I'm actually SHOCKED right now how short that distance felt. My next stop, a tree in the parking lot across the street, doesn't seem far at all.

I remember leaning on this tree GASPING for air. If I thought about it, I had my phone out ahead of time so that every time I had to stop, I could pretend to be texting. This tree isn't even half way yet, and many times I would be ready to cry already. I did notice a gradual incline as I crossed the street this time.

Crossing the parking lot, which is slightly uphill, was definitely my farthest distance between stopping. It took me under two minutes to reach the big rock across the lot. Felt my heart working a little faster, but I was only S.O.B. for a few seconds. This is the halfway mark. Again, I would be GASPING for air at this point. Still being told I had only "minor" health issues. Looking at these distances now, seven years later, its like, "WOW." They seem so short. It’s hard to believe. This reaction is exactly what I was hoping for. Next, I go around the cafeteria to a picnic table alongside the building. From this point on, it’s all steeply uphill …

The picnic table was gone. I just kept walking. Definitely more of a workout this time. The hill got really steep. Some steps, too. Sitting in front of the dorm now, just long enough to write these few lines, and my heart rate and breathing are already coming back to normal. By this point, I would have been BEYOND EXHAUSTED. My roommate, Kelly, said I was "the soundest sleeper she ever knew." I never realized how completely exhausted I always was by the time I got back to the dorm room.

I can't tell you how many times I felt myself starting to pass out on the way to the English building (uphill from the dorm, a lot of steps into the building). I would tell myself, "Just make it inside. Don't pass out now on the street. More people will see you in the building." We still had no idea why I was "inexplicably losing consciousness." That class is all a blur. I was too worried about staying conscious to care about Shakespeare.

So much is going through my mind. Above all else is the realization that my main thought right now is not: "OH MY GOD, I CAN'T BREATHE!" Or how badly my chest burned with every inhale, like my insides were being torn apart. Or how dizzy I was. Every step, every breath felt like it would be my last.


Check out tomorrow’s blog post to see how my journal entry concludes.

The Unpredictable Road Ahead

By Kiara Tatum

It’s the New Year 2014, and we made it through the obstacles of 2013.  However, it doesn't mean that 2014 is guaranteed to be easier than the previous year.  Life is a journey or perhaps it is more like a cross country road trip with family and/or friends, and you will have great moments and memories along the trip. However, you will also run into bumps on the road. Whether it’s a flat tire, running out of gas, overheating of the car, disagreements along the way, it’s definitely not an easy trip. Having PH makes our journey a little bumpier than others.

2013 was a very difficult year for me. I was grieving a loss of my good friend, who died from PH complications.  I had built up anger, and I was feeling very depressed and hopeless.  Also, my family grew with a brother-in-law and his family as well as a new baby nephew.   I started teaching two classes a semester at the local community college, so I had stress from work.  I started dating which is another posting in itself.  I was even hospitalized at the beginning of the year.  And I was involved in some conflicts that I was getting into throughout the year because of my anger and being on that emotional rollercoaster.

But I learned a few lessons in 2013 that will help me get through 2014.  I would like to share some of those things with you which you may already know or practice now.  

1. Let go of the anger.  I’m so tired of being angry about having PH.  I want a life that is not controlled by PH, a PH free life, but I know that doesn't exist for me at the moment, so I have to learn to live within the bounds of PH.  By giving up PH’s control over my life, I see that I have accomplished more this year than I thought would have been possible.  I've taught two classes each semester, spring 2013 and fall 2013 despite being hospitalized in January 2013 just before my first time teaching two classes a semester. I spent lots quality time with my family; I went to Boston for PHA on the Road; I spent time with friends near; and talked to friends afar.  I think I have spent enough time being angry about PH.
2. Be content in every situation.  I was reading a devotional one day, and it talked about being content in every state. It's a hard lesson to learn, but I'm learning it. Whether I'm spending time with my family or lying in a hospital bed, I will be content.  No matter what the circumstance is, I have to learn to be content.  No more wanting something different, no more anger, and no more hopelessness.
3. Know you’re never alone.  As a patient or even as a caregiver, family or friend of a PH patient, we take on a lot of the burden all by ourselves.  Situations become more difficult for anyone to handle all by yourself.  There was a moment when I was so low that I didn't know what to do, so I prayed and then called a friend.  She talked to me, and then after work she came to my house and stayed with me for a while.  We had dinner out and talked about what I was going through. Through my faith, my family, and friends, I knew I wasn't alone and that I was loved by a lot of people.
4. Have ME time.  I realized that I need on a daily basis at least 15 minutes to just be with myself.  I take that time to get away from others, my cell phone, Facebook, and television.  I take that time to either write in my journal or read a devotional. Make time to be with yourself.  This can be a time for meditation, a hot bath, or whatever you need to do for yourself to relax, renew yourself, and refresh from the day.
5. Be hopeful.  Stop faking being hopeful; just be it. Throughout the year, I was trying so hard to be hopeful, but I couldn't feel it inside.  I was so hopeless about my situation of having PH, not being able to have a child of my own, and feeling lonely.  But as I said before, I'm never really alone. I'm seeing that my family is growing, I have so much love in my life from others who care so deeply about me.  I let the hope of a cure, finding love, and so much more fill me up, so that I can make it through each and every day.  

These may help you get through 2014 when you come across those speed bumps on the road.  I have been able to get through those challenges, troubles, storms, obstacles along my journey to make it through 2013, and I am going to try to make it through 2014 despite PH.  Have a wonderful New Year!!!

In Spite of PH

Kevin and Karen poses with some of their parade
walkers after Marietta's notoriously hot and humid Fair Parade.

It’s November and I am fired up. Is it because it’s PH awareness month? Possibly. Is it because I have learned a lesson in my life with PH and I am excited to keep going from here? Maybe. Final question, is it because I feel the last year has taught me something great, and I am burning to share it with the world? Well... it is a combination of all three, really. A year has passed since my first awareness month, and I have learned so much in the last year; talked to so many people; and I hope, helped one or two people along the way.

In January 2013 I decided that I was going to run for office in my hometown. It is something that I have always wanted to do, and I figured “why not now?” I am feeling better than I have in years, and I figured that if nothing else was learned, I would need to keep myself organized for my health, and to keep my PH from getting the better of me. At the end of the campaign though, as I look back at it, I realize I did something else entirely. As my wife, Karen, and I reviewed everything the other night, as we talked to our friends, the campaign volunteers, and the city officials who helped me prepare for my run for office, we came to a startling conclusion that hit us over the heads after my friend and fellow PHer Teresa Hayes stated “You live your life in spite of PH.” That’s when it hit me, she is right. Karen and I didn’t let PH rule us this year like it did last year; We lived our lives in spite of it; we did not let PH guide us, we controlled it, we took this “new normal” and just made it our “normal.” I didn’t let my pulmonary hypertension deter me, or hold me back. I actually used it as a springboard to start the conversation, I used my PH as the motivation to do this, to live this year with purpose and drive, and I didn’t realize I had done it until Teresa made her observation, and until Karen informed me that I had, in fact, done just that. Not at any point in the last year did we let PH deter us. If I had reservations about anything, Karen helped me find a solution that was beneficial to us both. I walked, I talked, I attended every event I could fit into my schedule, and I did it on my terms, in my way, making PH work for me. 

I understand that for every one of us, something may be different, that what works for me or you may not work for someone else, but it is possible to redefine ourselves with PH, and not let PH redefine us, at least not in a negative light. I have heard patients say that they feel different now, that the new normal has changed them. In some regards that’s true. Perhaps it’s a quiet fishing day now instead of a canoe trip on the lake. Perhaps its a relaxing car ride when before it may have been a bicycle ride. But you don’t have to let pulmonary hypertension change YOU; who we are at the core of our beings. That person who laughs; that person who enjoys a good book in the backyard; that person who strives to make their community better, they still exist. The only thing that changes is the means that we use to achieve our ends. You can still do what you want to do, you can still strive for something more than the sum of your parts. We, as chronic patients, have to deal with a myriad of things that “normal” people do not. That doesn’t mean we can’t make the disease work for us. I already see it in so many patients; people who have taken PH, and found a new cause, a new purpose, a new way of living that doesn’t restrict them. It empowers them to work for our community, and to work for a common cause. As patients in general go, we can do the same thing, but for our families, for our communities, and for ourselves. We don’t have to let PH define us, we can define it, and determine what this disease is to us. Is it the end of our world, or just a new chapter in our lives that we already have so much experience living? Is pulmonary hypertension a reason to curl up, or a reason to redefine ourselves and our purpose on this Earth? I think that it can be just that, a redefinition of not who we are, but what we are here to do.

Karen and Victoria play on the front porch. Life with PH
doesn't mean changing who we are, it just means altering
how we do things. Sometimes if a bike ride is not possible,
it's time to break out the bubbles for our family's
outdoor night.

I have learned so much about myself in the last year and how to live with pulmonary hypertension. This disease motivated me to throw my life into another gear, to do what I could with what I had and strive to make my world a better place to live. I used PH to start the conversation, and then to springboard from it into how we were going to make my town a better place to live. I took so much motivation from my fellow patients who have redefined themselves, and do not let this disease rule them, they rule it. We have to live with pulmonary hypertension, that is an unfortunate fact, but I believe we each can let PH rule us, or we can rule it. This last year, I learned how to not just live with PH, but how to make it work for me, how to use it, instead of letting it use me. I know one thing for certain, if I can do this, without realizing it, then there are so many more of you out there who can do this, too. We all need to find the exact path that works best for us. That is why I am fired up this November, because I have learned that I made my entire year an awareness event, without even trying. I may have lost my election (by 275 votes in a city of 15,000), but I feel I did so much more than just run a campaign, I feel I did so much more than learn to live with this disease; I learned how to redefine myself, I learned how to live my life in spite of PH, and I have learned that anything is still possible, we just have to learn for ourselves how to achieve it. 

Art & Coping: Relieving Stress Through Creativity

Mimi Jordan

“With PH, you can get a sense of feeling not as worthwhile; art has given me a feeling that I can still do things. It is something you can share with others, art of any type is a creative work, and is a positive and helpful thing to do.”

Mimi Jordan has found a way to turn the hardships of living with pulmonary hypertension into something positive, art. While Mimi has always been an artist, due to PH and limiting physical activity, she has found more time to focus on her painting. Mimi paints on average four-five hours a day, five days a week, or whenever he schedule permits. She states, “It is easy to become negative about the things you cannot do living with PH, you need to find some way to cope in a positive way.” Painting, for Mimi, has become a meditative experience and an important part of her PH. She believes, “you need to find something positive, and creative, art has given me a feeling that I can still do things.”

Unfortunately, due to her physical limitations, Mimi is unable to visit museums or art galleries; however she enjoys browsing various art websites online such as One Art World and Saatchi Online. In addition to this, Mimi has a site of her own! Take a look at Mimi’s paintings.

BreAnn McFarland

Similarly to Mimi, BreAnn has also found comfort in art work.  Always being interested in art, BreAnn quickly realized how great a coping mechanism it was for dealing with her PH, and migraines post lung transplant. As a child, BreAnn possessed the talent for being able to draw something by just looking at it. After diagnosis, she was no longer able to keep up in school and had to switch to homeschooling. Fortunately, BreAnn was given the gift of a lung transplant that rid her of PH, unfortunately, the side effects of the medication she was placed on were chronic migraines. In the process of enrolling into college, BreAnn needed an activity that could get her out of bed and rid her depression. She soon realized that school could not become a part of her plan anymore, and became a full time crafter.

PH bracelet made by BreAnn

BreAnn makes stationary ranging from cards and boxes, to gift bags and jewelry and even temporary tattoos! She is also an avid Photoshop user. She states, “doing what I like to do every day gives me a reason to get up. I love more than anything to make things for people.” Through crafting, BreAnn has also acquired an online family from sites such as Facebook, Paper Craft Planet, and Crafts digital art center (CDAC).

Although she would like to, BreAnn is unable to visit museums or art galleries due to her lack of mobility caused by the migraines. Even though she is unable to enjoy art in those ways, she expresses her feelings on the benefits of creativity and art work. “You need some way to express what you’re feeling creatively as a way to get your feelings out. Great art has come from bottled up emotions. Art is not something you have to share, but something that helps!”

Brandi Stickney

Although Brandi has always been interested in art, she more recently has become interested in taking photographs both for herself and for others.  Upon diagnosis of PH two years ago, Brandi realized that photography was something she was really good at, and an activity of little physical demand. Brandi spends about 2-3 days a week, and around 20 hours a week on her photography. She has found children her favorite subjects to photograph because of their innocence and realness. Brandi states, “it makes me feel like I can do something that is in my control, because I cannot control the way I feel.”

Brandi frequently enjoys visiting museums and looking at other people’s art work to get inspired. For others who have not yet found that perfect coping mechanism, she shares “having a hobby you really love gives you a sense of control in an otherwise chaotic situation. It keeps your mind off of the things you cannot do.”

Need A Pick-Me-Up

By Kiara Tatum

I don’t know about you, but I have been having an extra hard time these last few weeks.  And all of sudden last week it hit me that it was my good friend’s birthday.  She died from PH last year in October.  She was my first friend that I had gotten to know, and we became good friends and had more in common than just PH.  We talked about everything and even cried together.  It just been sad to not be able to do that with her anymore.  I have been in a fog for almost an entire year and not really coping well with her death because I tried to cover it up.  So I think I just needed to let the hurt, the anger and sadness out.  I needed a pick-me-up.

But I think as we are ending another year with holidays and celebrations, we are all going to be cycling with feelings of sadness and anger which we are going to need some fast acting pick me ups to get us through these months ahead.  I have been finding that journaling is my go to pick me up, but sometimes even journaling is hard for me to be honest with my words.  So I've been allowing music to do my feeling for me.  Let music—Pop, Country, R&B, Rap, Jazz, Classical, Rock, and any genre—be your voice and just let go!

Music heals the soul.  One of my favorite songs on my playlist that always helps me fight another day against PH and have hope is Roar by Katy Perry.  It came in handy when I was just feeling down about the unknown.

I got the eye of the tiger, the fire

Dancing through the fire

'Cause I am a champion

And you're gonna hear me roar

Louder, louder than a lion

'Cause I am champion

And you're gonna hear me roar

You have to fight this illness with faith, hope, and music.  Because this illness has a way of bringing you to places you don't want to go to, it can be difficult to find your way back. So let the music play on!

PH Goes to College

Part I by Kiara Tatum

It’s August, which means its back to school time for students.  But when you have Pulmonary Hypertension, it can change the flow of the college experience.  Whether you are a commuter or live on campus, having PH and going to college is rough.  I had symptoms of PH while enrolled in college; however, I wasn't diagnosed until two years after graduation.  However, I know how difficult it was for me to get around the college campus and to balance the shortness of breath, fatigue, chest pains, and stress of the college course load as well as a social life with friends.  Here’s some helpful advice that might be helpful to you during your college days.

1. For those living on campus or away from home, find a PH specialist that is near your college campus that you can turn to during a medical emergency.  However, you should be keeping in contact with your PH specialist from home since you will be returning home for doctor appointments and care while not in school.
2. Go to the campus disability office or office of accommodations right away.  By going to the disability office you can find out what services are offered to students with disabilities and what your rights as a disabled student are, especially if you have to be hospitalized and will miss classes as well as need to make up exams, labs, or special assignments.  Make sure that the disability office has a copy of your necessary medical documentation on file.
3. Let your professors know that you have Pulmonary Hypertension.  Explain to them that you may miss classes due to your illness.  However, you will inform them via email or voice mail, so that you can continue to keep up with your studies and assignments.  But you may need extra time to complete assignments if become hospitalized or have bad PH days.  
4. Whether you live on campus or commute, be prepared for a medical emergency.  Keep the emergency documentation on the room refrigerator, keep in backpack, or even put on your cell phone.  And make sure the campus medical office has a copy of your medical records as well as wear a medical alert ID bracelet.
5. Use your academic planner to keep track of not only of all your assignments and due dates, but of your medical appointments, medication reorders, and medical contact information.  This will help you be less stressed when trying to balance the college life with your medical world.
   
6. Get email and cell phone number of at least one person from each of your classes that you contact and obtain a copy of notes and/or class assignments if you have to miss class. This will help you to stay caught up if you have to miss classes due to bad PH days or hospitalization.
7. Stay in contact with your parents or caregiver.  This is especially important for those who will be attending college for away from home.  Those who love you should hear from you each and every day.  It can be a quick text if you’re busy, but they should know how you are feeling in regards to your PH and well being at school.  If you’re not doing well, then be honest and let them know that today wasn't such a good day and explain to them why. 
8. Oxygen can be an asset when walking on a large college campus.  Getting around on the college campus can be difficult, so adding oxygen or using medical equipment like a scooter or motorized wheelchair can help you get around the campus with ease.
9. Take good care of your physical and emotional needs especially if you live on campus and are away from home.  Always make sure that you take your medication as prescribed and use your coping tools to get through stressful times.  It’s great to have a social life, but keeping a good balance will help with the course workload and keep your body and mind less stressed.
10. Know that it’s okay to say that you have to go home or that you have to drop a course.  Sometimes you will miss too much class due to hospitalizations or bad PH days and need to drop courses during the semester.  You may not always be able to keep caught up during that semester, so taking a leave may be necessary.  Just be okay with that decision and know that you can always go back next semester.  Even though you may feel angry and disappointed, stay motivated and positive.  You will get your degree, no matter if it takes you a little longer than someone without PH or a chronic illness.

Stay tune for PH Goes to College Part II.  Hear from the voices of current college students that are diagnosed with Pulmonary Hypertension.