“Luckily, some friends directed me to the PH Association website… That restored my hope!”
“Hi. My name is Christa and in May 2010, I was diagnosed with idiopathic pulmonary arterial hypertension (PAH).
“On May 19, 2010, I had an appointment to see the doctor. There is a free/by income clinic downtown. I didn’t have insurance, so this worked best for me. This was my first visit to establish a relationship. They did a physical, etc. They were checking my pulse and oxygen saturation. When the nurse came back in to see where my pulse and stuff was, she looked at my finger and then had me rest for five more minutes. The number read 86. I had no idea what that meant. They seemed to be alarmed enough to do a chest x-ray. The doc came in and never said anything about the x-ray except for I’d be getting the results in the mail. That didn’t sit right with me!
“I went to visit one of my best friends and she was kind of concerned. She hopped online and talked with a mutual friend we’ve known online for a long time who’s a retired registered nurse (RN.) After they went back and forth a little, they asked if I was short of breath at any time. I told them I hadn’t noticed except from walking to one end of the mall to the other. I had to go to the bathroom, so I told her when I got back, we’d both pay attention to see if I was experiencing shortness of breath. I was, so our retired RN friend suggested that I go to the ER.
“They ran some tests and then the ER doc comes back with “Well, I suspect it’s either right heart failure or pulmonary hypertension (PH).” I remember thinking “high blood pressure? I can eat better and stuff, it’ll be fine!” I had no clue that PH is NOT the same as high blood pressure.
“They admitted me to the hospital and ran EVERY test they’re supposed to run when checking for PH except for a right heart catheterization. I was released May 21, 2010. I had a right heart cath in August to confirm my PAH diagnosis and my local pulmonologist referred me to my amazing specialist in Augusta, Ga. I have been on a combination therapy of Adcirca and Letairis for eight years and I’ve been stable for the last four years. I’m also on Lasix and supplemental oxygen with sleep and exertion!
“I had googled pulmonary hypertension (the WORST thing to do! Haha!) and all I could focus on was “fatal,” “incurable,” “life expectancy,” “prognosis” and whatever else scared me. I had lost my long-time career (that I loved so much and miss!) of a hairstylist, I lost hope, I lost faith and I lost who I was before getting sick. I had to grieve the loss of the old me before I could rebuild and embrace the new me!
“Luckily, some friends directed me to the Pulmonary Hypertension Association (PHA) website. I learned so much about my lung disease. I was able to read other people’s stories — people who had been diagnosed 15, 20, even 30 years ago. That restored my hope! It has taken me three or four years to embrace the whole “I have PH but PH doesn’t have me” mantra.
“I got lucky. There are SO many stories out there involving people being misdiagnosed for years before they finally get the right diagnosis of PH. If it weren’t for my two friends getting me to the ER and if it weren’t for my doctors suspecting PH right away, I wouldn’t be here today. I was already in heart failure when I was first diagnosed! I try to spread as much awareness as possible because early diagnosis is so important!
“I have had many people, friends and acquaintances express to me that I’m so positive given my diagnosis. It wasn’t so easy until I found PHA’s website. I’ve encountered many ER doctors in the last nine years who didn’t really understand what PH is. I once had an ER doctor who knew exactly what it was and he quizzed me! He was very impressed with my knowledge and told me that a lot of people who have been diagnosed with something serious don’t take the time to research and learn about their diagnosis.
“I’m not much of a support group participant. In my experience, when I tried online support groups for PH, it triggered my depression because of the majority of negative attitudes. I understand that no one with a chronic illness (fatal or otherwise) can be positive 100 percent of the time. I’m not going to deny that my depression tries to keep me down at least one week out of every month. For the most part, I am positive and I like to surround myself with positive people!
“There was a TV show on NBC called “Undateable.” The entire cast, writers, and crew were very involved with the fans via Twitter. I was able to send the writers PH Awareness bands during PH Awareness Month and they tweeted out a photo in support!
“Through that show, I’d became aware of a few comedians. I’ve been to their shows several times and they’ve been very supportive friends to me! If Brent Morin, Jason Collings, Tone Bell or Rojo Perez are ever in your city — check them out! I’m biased but I’m still going to say that they are hilarious. Going to their comedy shows are my happy place. Also, Jason Collings has a twin brother named David and he is also a very supportive friend. I am so thankful for these people. I love them very much. Also, my sister is one of my biggest supporters as well as my caregiver and my best friend!
“I wake up in the morning and I choose to be happy. It may change as the day progresses, but I like to start with a valiant effort. I am also on my ninth week of working out about 25-30 minutes six days a week. I found some videos on YouTube that are exercises you can do while seated in a chair. I just put the YouTube videos on my television, turn my oxygen concentrator on, and get through the workout at my own pace. I’m thankful for the pause button! I think the combination of surrounding myself with positive people and exercise contributes to me being hopeful for every year that I’m able to kick PH’s butt!
“I know this is lengthy — my apologies! I’m so very appreciative for this opportunity to share my story as well as what helps keep me positive while I continue to be a PHighter.”