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Wednesday, January 8, 2014

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.

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 ...


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”

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.


  1. Wow! Sounds so familiar. I was diagnosed in 2000 and had chf too. Seems like so long ago. I'm on flolan and oxygen full time, and I feel sooo much better than I did just 5 years ago. Since I've been diagnosed, I've survived a bone marrow disease, thyroid cancer, and CO2 poison. I AM surviving PPH. I love my life, and I am thankful every day for all my blessings!

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