I decided to start this blog to talk about my experiences dealing with a rare condition and as a way to update my friends and family while trying to keep myself sane. I also hope that this can serve as a tool to inspire/educate others.
I was diagnosed with Pulmonary Arterial Hypertension a couple of years ago. This is basically a disease that causes high blood pressure in the arteries of the lungs. This causes the right heart to pump too hard to move oxygen through and can lead to right heart failure. PAH is relatively rare, however, it is difficult to diagnose and often times is not diagnosed because it mimics other illnesses. I have PAH due to a side effect of the treatments I was given when I was a child to cure my cancer. I was treated for Neuroblastoma when I was two until I was six years of age.
The past couple months have not been easy for me. We had a series of terrible fires in our area this summer and the poor air quality, I feel, sort of kick started the PAH into high gear. Most of you know by now, I was put on oxygen and have been in and out of the hospital. I have been through several tests, missed way too much work and slept a lot! On Monday, I saw my Pulmonary Hypertension Specialist, Dr. Joseph (Dr. J). The plan is to start me on a new medication called Opsumit. This drug will hopefully, help slow down the progression of the disease and help improve my life by helping increase my endurance, walk farther and do normal things without becoming so short of breath. I hope to get started on that next week when all the paperwork, insurance has gone through.
Dr. J also recommended that I go to the UW to be evaluated for the potential of a lung transplant. This is huge and honestly scares the shit out of me. He said that because of the damage the radiation did to my lungs to cure my cancer, it has left me with 42% lung capacity. This will unfortunately continue to decrease as I age. I have strong feelings about this but trying not to let my fears spiral out of control. After all, it is only an evaluation. I don’t have to commit to anything yet.
It’s funny because sometimes I feel that I am looking at all of this from someone else’s body. This isn’t really happening to me is it? Haven’t I been through enough already? But it is me and I am going to do what I always do, laugh, keep my head up and pretend I am not scared.