Welcome Friends!
Shaye M.
Texas
Birth Date - May 16, 2000
Main Diagnosis - Pulmonary Hypertension
THEME: Fun Food
Biography
Shaye is 12 years old and was 9 years old when she was diagnosed with
Pulmonary Hypertension. Pulmonary hypertension (PH) or pulmonary arterial
hypertension (PAH) is high blood pressure in the lungs. PAH is a chronic,
progressive and terminal disease that can lead to right heart failure and death.
There is no cure, and eventually she will need a lung transplant. We live in
Katy, Texas a suburb right outside of Houston.
Shaye was diagnosed with extreme anxiety in 2007, but during the 2 years that
followed, her symptoms would continue to get worse, and her Dr would say it was
due to her anxiety. Heart palpatations, dizziness, sweating, nausea, chest
pains. What we would find out later is all of this was caused by something else,
something we could never have prepared ourselves for.
Shaye's story begins on February 19th, 2010. She fell at school in PE and hurt
her back. The nurse said she was fine and sent her back to class. She came home
and we did heating pads, tylenol, etc and a week later it still wasnt feeling
better. We decided to take her to the pediatrician. Her dad took her, and they
sent them to the hospital next door for xrays thinking she hurt her back
somehow. They told them it would be about 2 hours before the results would be
back and the Dr would call us. A couple of hours passed and they called my
husband and told him that she had fractured her spine, of course are you kidding
me???? Was our reaction. They said she needed to be taken to the Texas
Childrens hospitals ER. I left work and went by to get the xrays to take with
me. Picked up Shaye, while my husband stayed home with the other 3 children. We
left for the hospital which was about a 30 minute drive from Katy where we live.
We waited and waited to be seen, seemed like forever. We finally were taken to
a room. The ER Dr first listened to her chest and asked, " she has a heart
murmur"? I said no. He said, " she does now and it isnt a good one". He said
he was going to go look at the xrays and would be back. When he returned about
45 minutes later, he had another Dr with him who he introduced as the
cardiologist on call. Of course when I heard cardiologist, my heart sank. He
asked if I wanted the good news, or the bad news first. I said the good news, I
just wasnt ready to hear anything else. He said the good news is that her spine
and back were perfectly fine. The bad news is something is wrong with her
heart! My heart sank. The cardiologst took over, and told me that he was
ordering an EKG because the xray also showed an enlargement of the ride side of
her heart. She failed the EKG so he told me they were ordering an echo
cardiograham. About 3:30 in the morning, they were doing the ech
o on her. It took a very long time it seemed, at least an hour and 1/2. He told
us they were admitting her for more tests.
We were taken to her room on the cardio floor about 5 am, and I thought we would
be able to get some rest before more tests were done, but as soon as we were in
there, the Cardio came in and told me they suspected Pulmonary Hypertension. We
had no clue what that was, but our lives as we knew it was about to be changed
forever!
The reason for her back pain when she fell the Dr said that her lungs were at
their full capacity due to the high pressures so when she fell she felt pain. We
have been told without medication she has about a year. With medication, they
arent certain, it all depends on the medications and how they work. Her levels
are severe, and all we can do is hope and pray the medications keep her levels
low to slow down the progression. PH is a progressive terminal illness, so
there is no cure, but hopefully we can slow the progression down. We have taken
a step back and learned to look at life differently, because you just never know
when your child, or someone you love can be taken from you. Life as we knew it
has been changed forever.
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