Patient story

Marla AkinsMarla Akins

Marla Akins

June, 2011

August 2008 was a great month. I was running nearly 40 miles a week. Next marathon on the notch was to be Gasparilla Distance Classic in Tampa, Florida, my home city, for the second time. Slowly over the next month of training, my running got much slower and I had to stop for frequent walk breaks. I could tell there was something wrong with my breathing, but didn’t think anything of it.

In October, I couldn’t even run to the end of my street without stopping. I finally called the doctor. After a brief visit with my primary care provider, I asked for a referral to the pulmonologist. I picked a name out of a hat. I had no idea who to see, all I knew was that I wanted to be seen fast so that my running could get back on track. After calling around, I found one that could see me the very next week. He said that my symptoms sounded like exercise induced asthma so he prescribed me two inhalers and we made a follow up appointment in two weeks.

After the first week, I felt no relief so I called the doctor and he recommended I inhale more often while running. That did not help and I informed him at the second visit. He told me to get a chest x-ray and referred me to his cardiologist friend down the street. My follow-up appointment with the pulmonologist was the day before Thanksgiving. I got an echocardiogram done by the cardiologist. We needed to get out of there fast because my entire family would be arriving in just twelve short hours. I brought my husband and 6-year-old daughter. Why did I bring them? Thinking back, I have no idea what initially made me want to bring them. Remember, I thought I only had exercise-induced asthma. The doctor came in to the room and told me I had pulmonary hypertension. I had no idea what that was and just sat there. I may have even started laughing at that point. To tell you the truth everything went numb as soon as he said, “Marla this is serious business, your life expectancy is three to five years and you need a lung transplant.”

All I heard was that was it for me. I was a 37-year-old woman with a 6-year-old daughter and husband. Who would take care of my daughter? Who would drive her to school? Who would buy her clothes and watch her get married? We left. What else was there to do at that point? Of course we called our families and told them the news. Everybody was shocked and in deep sorrow. Imagine how our Thanksgiving was.

On Thanksgiving Day, my father told me about a pulmonologist who specialized in PH. My cousin Scott recommended him to us. Without that recommendation, who knows what kind of care I would have received. He gave my number to Dr. Gossage at the Medical College of Georgia in the Georgia Health Sciences University. Three weeks later, in the middle of December, we were in Augusta, Georgia. The initial diagnosis was confirmed, but there was no life expectancy given this time. I was started on Sildenafil at 20mg, 3 times per day.

After a couple months, I was passing out while walking at work, so I needed something stronger. I had also gained 25 pounds. My cardiologist in Tampa never said a word about it and told me to stop eating so much. When I got back to Georgia in February of 2009, I was in right heart failure and in critical need. My pulmonary pressures were in the 100’s and Dr. Gossage immediately admitted me into the hospital and Flolan was started within 24 hours. At that time I was also started on Tracleer. After 2 weeks in the hospital, I was finally ready to go home and be a mommy again. (Oh yea, and did I mention I work full time as a speech language pathologist?) The truth was, it was tough. Crying every day, afraid I was going to die. It’s just hard to get past that.

I started seeing a therapist and walking for exercise. I started attending support groups sponsored through PHA. I attended two groups, one in Sarasota and one in Lakeland, Florida. I went back to work. My mood started to get better and was somewhat becoming normal again. In September 2009 after seven months on Flolan, I had a right heart catheterization. My pulmonary pressures had gone back to normal. Me? Normal? “Maybe only from the neck down,” Dr. Gossage would say.

In October, my doctor and I began weaning myself off the pump. In December, I started on a Treprostinil, an inhaled medication. Since February 2010, I have been on the inhaled medication Letaris and Sildenafil. I feel great. I exercise five times a week; I take my daughter to amusement parks, the beach, roller skating, bowling and work full time. I also just returned from PHA’s International Conference and Scientific Sessions in California, where I got the nerve to start running again. It is a very slow process, but I feel awesome. I contribute my mental and medical success to my very supportive family, the support of the PH support groups and my awesome pulmonologist Dr. James Gossage. I couldn’t have gotten to where I am today without the help of them. If you live in the Tampa Bay area in Florida, please attend our newly started support group. We would love to have you.


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.