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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Kalena Sawyer Transcript

Dec 26, 2016

Pulmonary hypertension patient, Kalena Sawyer is always spreading the word about her rare, life-threatening illness. Because PH is an invisible disease, Kalena wants people everywhere – especially medical professionals to become #phaware.

My name is Kalena Sawyer and I'm from Okemos, Michigan.

It was May of 2013 and I could not breathe. I thought I had asthma and went to the hospital. Did an EKG. I was admitted to the hospital and they took some x-rays. They gave me Lasix. We went at 3:00 in the afternoon. By midnight in my hospital room, I had cardiac arrest and died. They broke a rib getting me alive or getting me back to the world. I was in ICU and they diagnosed me with this disease. I have a lung full of fluid. I had pneumonia. I had sinus infection and I had to be on a CPAP machine and that's how I was diagnosed.

I've never felt better. I lost 165 pounds. I had a hip replacement last June and the doctor said I had to lose 100 pounds so I did that. I had 50% chance to live through it and I said, "Yes, I'm going to get it because I didn't want to be in pain." Plus, I was on oxygen for two years. My life is completely changed. They took me off oxygen six days after the hip surgery. A week and a half later, I was off painkillers and no oxygen and I just couldn't believe it.

I can walk, I can do yoga and I've never felt better. The years before, I was always out of breath. I was diagnosed with high blood pressure and my doctor thought I probably had the disease a year before I was diagnosed. I have my good days and bad. I push it sometimes and then I'm wiped out the next day. I have to remind myself that I'm sick because I feel so good. The longer that I'm on this medicine, the better I feel.

Spreading the word, it's such a weird disease. Especially in the hospitals in the area that I live in, they do not know this disease. I'm always spreading the word. I'm always showing my ... I'm not shy. I keep my pump in my bra to be blunt and I have my site. I lift it up and show them. I have an invisible disease now, so I'm always telling friends and the phlebotomist and everywhere I go about my disease.

It's just so rare. People just look at me and they don't know about it. Can't wait to do some fundraisers for this disease, because nobody knows about it. It would be perfect for me in the area, Michigan State, the East Lansing, Michigan. I would be very blunt with them and tell them how I felt my experience, what I went through and to tell them that it does get better. That getting used to the medicine was very difficult. I felt like I had the worst flu ever for two and a half months.

I was always told. Nobody told me that. Everybody said, "Oh, you'll get better in a few months. You'll feel better." Telling them that and the nausea and the different side effects in everybody. Side effects would be different, but the most common was those flu-like symptoms. I would just be honest and open with them and that try to hide these effects from them.

That's what I wish I had when I first started getting used to the medicine. Months later, you just feel better and better and the oxygen going ... Without it, if you just eat or just go to the bathroom and walk was a huge difference. I have an oximeter and I always check my oxygen. Your body talks to you, so if you're worn out or if you're taking a walk and you feel a little bit a shortness of breath, stop and relax. Smell the flowers and blow out the candles. That's how I would explain it to them.

I’m Kalena Sawyer and I'm aware that I'm RARE. 

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