About Me

My Story

One night in 2007 after getting home from a camping trip, I started coughing up blood. Lots of blood. I was sitting on the couch and feeling completely fine, coughed, and blood came up into my mouth. I'm not going to lie, I was freaking out a bit.

This episode of bloody nasty coughing lasted about a week, during which time I was exhausted. I went to school, work, and slept. My parents took me to the doctor, who prescribed cough medicine. (WTF?!) At the time I didn't have a primary care physician (PCP), so we told him about this crazy disease that runs in my family. The doctor assured me that Pulmonary Hypertension would not make me cough up blood, but he was going to give me a referral to have an echocardiogram (ultrasound of the heart, ECHO), because of the family history.

I stopped coughing up blood, and never pursued my referral. There were red flags which I completely ignored. My friends would blow past me while out hiking, I was short of breath any time I walked up an incline - even though I worked out regularly. The second time I started coughing up blood I knew in my soul what was wrong with me.

That same morning on the way to work I called my grandmother, and I asked if coughing up blood was a symptom of PH. She assured me that I probably just had a cold, that it was not unusual for people to cough up blood when they are sick. She also informed me that with Pulmonary Hypertension, a patient wouldn't cough up blood unless it was really severe.

I promptly brought in the water bottle that was half full of blood I had coughed up during the night to the doctors office. Coughing up 8oz of blood is not normal. Not at all normal. The doctor referred me to an ENT (ear, nose, and throat doctor), because it was assumed that there was a problem with my throat, which was causing the bleeding.

The ENT could not find any reasons that I should be coughing up blood, but during the examination he found a lump in my neck. A few tests later I was on the operating table to have my thyroid cancer removed. At the time the doctor told me that if you had to have cancer, thyroid cancer is the one you want to have. This sounded asinine to me, but I have since realized that his comment was 100% the truth.

A few weeks after surgery I was taken in for a Heart Cath to measure the pressures in my lungs. They wanted to go through the neck, but I told them to screw off, they were not putting anything near my neck. After waking up from the procedure the doctor informed me that the average person has a pressure under 25, and that my pressure was over 100 - so yes I did have Pulmonary Hypertension.

I put on my big girl panties and I asked the doctor if he knew how long I might have left to live. The doctor was taken aback by this, and asked me what I knew about PH. I told him my family history, and he informed me that many things had changed, and many medical advances had been made. He was going to refer me to a specialist to get me on the proper medications right away.

The whole ride home I cried and cried. Then I shut myself into my room for two days and laid in bed crying. My life was over. I was going to die. On the second day I emerged from my room determined to live the rest of my life to the fullest. Now my life has completely changed, I have made it 8 years since diagnosis, and I plan to live at least another 50. Pulmonary Hypertension doesn't have to be the end.