In 2008, I started having
fainting spells. For example, my family went to Mustang Island (near Corpus
Christi, TX) for my mom’s birthday. While there I was body surfing with my little
cousin. One of the times we went out, I remember starting to feel dizzy, my
hands went numb, and the next thing I knew I was on the beach in my dad’s arms
with the ambulance pulling up next to us. My cousin’s dad had started to make
his way towards us in the ocean because he thought we were too far out. Thank
God he did because as he got closer to us he said I yelled out to him “I’m not
feeling well” and then went under the waves. He ran to me and pulled me up and
carried me to shore. That was just one of countless times I would pass out. I
spent a little over year going from doctor to doctor trying to figure out what
was wrong with me. None were able to find anything.
Late
May of 2009 I was still living with my parents at the time. Once night I stayed
up watching a movie, once the movie ended I stood up reached over my head to
turn off the ceiling fan light. As I brought down my arm I felt my world spin,
and elastic band gripped my chest and I felt like I couldn’t take a deep
breath. My heart was pounding in my chest, I felt like a marathon runner looks
after a race. I was panting and shaking, my face legs and arms started to
tingle then slowly went numb. I carefully got up and went into my parent’s
room. I told my mom we needed to call another doctor in the morning because I
wasn’t feeling well. When I told her my symptoms, she rushed me to the closest
hospital, which at the time was SE Baptist.
On
June 1, 2009 I was diagnosed with Pulmonary Arterial Hypertension (PH or PAH
for short). I was given 3 months to live, but again I out lived my prognosis.
After months of testing doctors determined it was Idiopathic, meaning there was
no underling cause for my PH. What is pulmonary hypertension? It’s high blood
pressure in the lungs. PH can cause right heart damage in untreated. Because my
PH took so long to diagnose the right side of my heart is about 3 times larger
than normal. My life has been turned upside down and inside out sing my
diagnosis. Because of lack of oxygen I am often tired and have trouble walking
to my front door. There is no cure for PH and it is a progressive disease (only
gets worse over time). Eventually I will need a heart and double lung
transplant.
Today,
6 years after my diagnosis I am taking 15pills a day and I have a permanent
Hickman port in my chest that gives me intravenous medication 24/7.
Last
Wednesday, September 16, 2015 I was hospitalized because I developed an
infection at my port site. Due to the deadly effects an infection can cause a
PH person, I was put on intravenous antibiotics to treat the infection
aggressively. On Friday, doctors decided to let me go home with a pick line
(like an iv but it goes straight to through an artery and into my heart.) with
the iv antibiotics. These antibiotics are very expensive and unfortunately for
me cost $50.00 a day. I found out today (9/21/15) at my checkup I need these
antibiotics for at least another 7 days. Thankfully a friend started a gofundme
account and it has been how I paid for the 1st 4 days ($200) but now
I am struggling to get the money together to continue the antibiotics I need.
The Infusion Medication Company needs the payment before they deliver the rest
of my antibiotics. I will run out of the antibiotics on Tuesday, September 22,
2015 at 5:30pm. I am praying for yet another miracle.
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Top Left: Pick line for the 2 iv antibiotics I need
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Once
this infection is gone my doctor wants to start the process for requesting the
heart and lung transplant. I will not give up on hope, I will keep fighting for
my life. I have never been the type to give up and I am not going to start now.
To help with cost of antibiotics: https://www.gofundme.com/sarahrios
In this short video, Dr. Vallerie McLaughlin explains the basics of pulmonary arterial hypertension (PAH).
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