“I hope for people to understand that just because we look ‘okay’ doesn’t mean we are.”
By Tanya Turrentine
“I have lupus and CREST (a connective tissue disorder). In June 2018 I was diagnosed with pulmonary hypertension (PH). The hardest part was going from being a person who exercised five times a week to a person who gets out of breath from walking to the restroom and is tired all the time. Living with a constantly pounding heart, pressure in the chest and never having enough ‘air.’ When my family wants to do ‘outings’ I worry that I won’t be able to keep up. My treatment began with Letairis and Tadalafil. After five months my symptoms came back. Now I am on O2 and triple combo therapy, which adds Uptravi. Unfortunately, it’s not working for me.
“There is still hope! We are discussing moving to continuous IV. My hope is that PH will be diagnosed quicker and treatment will begin sooner for future sufferers. I hope for a complete cure. I hope for people to understand that just because we look ‘okay’ doesn’t mean we are. We don’t want sympathy, just understanding. My family is my biggest hope because I just hope to spend lots of good years with them.”