May 9, 2019
In August 2015, I noticed I was swollen and my breathing was labored. I painted cars for a living and figured I had a respiratory problem from breathing those fumes in. My wife (girlfriend at the time) convinced me to go to the doctor. At this point in my life, I had never had any medical problems. The doctor sent me to the emergency room immediately. My oxygen level was close to 50 after walking. After one month in the hospital, it was determined that I have Factor V Leidon (a genetic clotting disorder). I had passed 10 blood clots through my heart and into my right upper lobe of my lung and I had one stuck in my heart.
They put me on blood thinners in the hospital to dissolve the clot that was in my heart. Then they gave me a RHC (right heart catheter) and diagnosed me with pulmonary arterial hypertension. It was caused by my Factor V Leiden, and I was scared for my life. I had never heard of this disease, and from what it sounded like, I was basically getting a death sentence.
I had to stop working; I was put on a bunch of medications and told that I needed a heart and lung transplant. I have a son, and a family that I love so much, and it crushed me thinking that my life was basically over and the thought of me leaving them made it even harder.
Over the next couple of years, nothing improved. My breathing was getting worse, my swelling was getting worse; I was getting to a point where I wouldn’t leave the house because just walking to my car would wear me out. Then I went to an appointment with my pulmonologist and he said he is doing everything he can, and referred me to a pulmonary hypertension specialist at the University of Washington in Seattle.
Before my first appointment I started swelling up really bad, and feeling really tired, so I went to the ER at UW. They gave me a RHC and did some other tests, and put me in the ICU for 16 days..
I lost 30 pounds from water retention.. 30 POUNDS!!!
And then my new pulmonary hypertension doctor (Dr. Leary) came to talk to me, and I had my first appointment with him in the ICU. He started me on Uptravi. And everything he talked to me about made sense. I finally felt like there was hope!! This was in January of this year. I’m still titrating up on Uptravi, and taking Sildenafil and Letairis. I take Bumex now instead of Furosemide (I was upto 120mg twice a day and it wasn’t working anymore.) I take 3mg of Bumex twice a day now and it works awesome. I’m at a point now where I feel so much better. I’m able to go do stuff. Nothing too crazy, but stuff that normal people wouldn’t think twice about… like tying my own shoes, and being able to bend over to pull my pants up.
I recently walked up my stairs without taking a break to catch my breath. I haven’t done that in almost 5 years!!! I never realized how much my oxygen level affected the way I feel. Now that I’m aware of what’s going on inside my body, I realize how important it is to keep an eye on my oxygen. When the numbers drop it can make you feel like your breathing through a straw.
These new meds are amazing. I’m now looking forward to the future, and what I’ll be capable of. I know there is no cure for PAH, but knowing that there is medication to make my quality of life better gives me a positive outlook.
I’m not going anywhere soon. I'm a PHighter. And my team of doctors and my family and friends are 110% behind me. I’m 40 years old, and I'm excited to tell people a success story when im 90.
