Friday, 11 July 2014

PHighter Friday: Nicole

I was very very healthy when I was younger. I didn’t really have any issues growing up except a few migraines here and there.

When I was 18 (in 2006) I went to the gym and passed out. I didn't really think much of it. A few months later I went to school and passed out walking up a flight of stairs (talk about embarrassing!!!!!) My parents decided that I should go to a cardiologist. I went and they ran every test imaginable and guess what?!!! They couldn't find anything wrong. They said it was all in my head!!! You know because I enjoyed making a fool of myself and passing out in front of everyone lol! (Def not funny at the time!!)

Three and a half years went by and I continued passing out, each time was worse and worse. I finally got a second opinion and that doctor said I had something called POTs. He put me on vasoconstrictor and sent me on my way. Six months later (may 2006) I got married and my husband’s job takes us to Missouri. I felt horrible the next 6 months. Tired, passing out, and just feeling miserable. I decided to take myself off my medicine. I could tell I felt a little better when I didn't take it.

Oct 1, 2006 my husband, his aunt, and I decided to go to a football game. We got home and I had a horrible migraine so I went straight to bed. I got up in the middle of the night to use the bathroom and passed out. My husband tried to get me to come to and he couldn't. He called 911 and they talked him through giving me CPR. He did that for the next 20 min until the ambulance got there. (We lived out in the middle of nowhere) I finally came to and they rushed me to the nearest hospital. Stayed there for 30 minutes when they realized that something was really wrong and they rushed me to the nearest big hospital.

I was scared but I had this sense of peace that everything was going to be ok. The next few days they ran so many test. Couldn't figure out what was going on. I passed out one more time in the hospital and my heartbeat went down to 11 beats. Scariest thing ever. My doctor finally came in and said we think you have Pulmonary Hypertension we need to do a right heart cath to confirm. They did a heart cath and found my pressures were in the 100s. At the time I didn’t realize how bad that really was.

The doctor had never seen or even heard of PH. So the first thing they told me is that I was going to need a heart double lung transplant! A what?!!!! I didn't even know that was possible.

He decided to call around and see if there were any other options. We were desperate for something other than a transplant. I was 22 years old for Pete's sake. I had tons of dreams I looked forward to accomplishing and that was not on my to-do list. The doctor finally came back and said there was this drug that they called the miracle drug...Flolan. He told me about it and I was excited and devastated at the same time. I stayed in the hospital in the ICU until October 31. I felt better on Flolan than I did in the past 4 years. It really was a miracle drug although a pain in the butt too! But it saved my life and I will forever be grateful for that medicine. I have since switched from Flolan to Remodulin and now I'm on the Tyvaso and Tracleer.
I am capable of doing almost everything I could before diagnosis with the exception of running. The best way I coped with being diagnosed is with prayer and keeping a journal.  I love looking back in my journal to see how far I have come since 2006.  I have also tried to keep a positive attitude!  I could let this disease get the best of me or I can make the best of having this disease.   

Since being diagnosed my husband and I have adopted two beautiful babies and are enjoying every minute of it.  Please feel free to email me with any questions at or check out my blog (that I haven’t updated in while..oops!!)

The PHight or Flight Project would like to thank Nicole for sharing her incredible PH journey for PHighter Friday!
* If you have an inspirational PH journey that you would like to share to help provide hope to those who are newly diagnosed, please contact me at More information about sharing your PH journey for a #PHighterFriday can be found under the Share Your PH Journey/Contact tab.

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