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.

A PHighting Disease Turned Into a PHenomenal Diagnosis

Haley Ann Lynn

When asked to do a guest blog of course, I excitingly agreed, then sat back and pondered on what the hell that exactly meant. Guest blogging? What was I supposed to be writing about or HOW was I supposed to be writing all this? Well, these lovely folks sent a list of writing ideas that I scanned over and after spending a day at the pool in the Texas heat, my idea came over me like a wave.

Who would I be without Pulmonary Hypertension? I tell people all the time, “Don’t let this disease define you, don’t let it consume you,” blah blah blah. But I ended up swallowing my own words because I've let nothing but this disease define me, for the good. Pulmonary Hypertension in a way rescued me, letting not only myself know, but skeptical others around me that in fact something WAS wrong. I was not normal; I was never meant to be normal. I've always been PHenomenal!

Rewinding far back into my life, the day I had my first episode, I was eleven years old in a 6^th grade gym class. We were expected to run these laps, and I just rolled my eyes—being the pre-teen I was—because for some reason I never enjoyed gym. This particular gym class was crowded with athletic girls who participated in track and basketball.  It made this this task just so uneasy. That day during my laps, I felt an extraordinarily strong pain come over my body, my vision was gone and I began gasping for air. I threw my hands behind my head and stumbled to the line where girls were finished, and I pretended nothing was wrong with me. From that day on these “episodes” were a constant companion. I had to make room for them in my life when I walked up stairs, in dance class… everywhere. I hated them, but I learned to work around them. My friends, however, not so much.

Moving into high school the episodes grew just like my body. They were not only everywhere, but they were all the time. Stairs? Impossible. PE class? Hell no. How was I supposed to function like a normal high school kid if I couldn't even walk around like one? Sports, walking to class, climbing bleachers for football games and just keeping up with friends in the hallway…these were all hard work. My physical body began to wear down, and my mental state began to fade as well. Friends and people in general were horrific. I was an outcast, a girl who faked breathing problems, a girl who was gaining weight, a girl who wasn't cool and eventually a girl who had no friends. People had fallen victim to this invisible disease not believing a word or a thing I did. It was easier to distance myself from normal life and exist in my own private world than to deal with the cruel people who broke my world every day. I was a loser at this normal life thing and extremely broken, inside and out. Graduation Day was like being let out of a damn cage, and it felt so good! I turned 18 a month later, and then quickly after I had my first appointment with a cardiologist. The minute Dr. Ray looked me in the eyes and said, “Something is very wrong with you!” I smiled the biggest I had in years. He turned me toward a mirror and exposed me for exactly what I was, showing me the invisible monster growing on the inside of my body. It wasn't always the easiest thing to accept, wake up to and deal with on a day to day basis, but after a while this monster went from a disease to a PHenomenal diagnosis.

Overall, who would I be without Pulmonary Hypertension? I would still be a loser, so called liar, pudgy, overdramatic, very alone and depressed outcast that I was. I would still be this “different” person that people use to make fun of, push away and call names. I would still be a non-normal person trying to live a very normal life. I never fit into that, and I wasn't supposed to, so thank you to all of those high school jerks that told me that! Turns out you were right! Pulmonary Hypertension showed me how strong, capable and simply PHenomenal I always have been and always will be.

-haley.

www.phenomenalhaley.wordpress.com

Haley Ann is a blog not centered on a disease, but a lifestyle change with having a disease. Covering issues from doctors, treatments, mental struggles, tattoos and even fashion. This blog is not to remind you of your flaw but how to live PHenomenally with your diagnosis.

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!!!