OUR JOURNEYS

Patient story

Deziree' Rivera

"You don't look sick".... we have all heard this at one time or another. I even tell myself this from time to time."

"You don't look sick".... we have all heard this at one time or another. I even tell myself this from time to time. My journey started on March 15, 2011 the day my second child and my first daughter was born. It is supposed to be the happiest time in a mother's life, bonding with your new baby. From the time my daughter was born I began to notice changes in the way I felt, but I brushed it off as just having given birth. The day after my daughter was born my legs, ankles, and feet began to swell drastically. Of course all of the nurses that I expressed my concern to said that this was perfectly normal after having a baby. However, I didn't remember this happening after my son was born.

Deziree' RiveraWe went home on March 17 just in time to celebrate St. Patrick's Day with our family. I began to notice that the swelling was getting worse and I started to feel short of breath, of course I ignored it and continued celebrating with our family and our new addition. The following days were amazing just as they should be, even if I spent the nights awake with my new bundle of joy. The following weekend on a Saturday I woke up and immediately started experiencing violent shudders all through my body, and I was hyperventilating horribly. I couldn't even speak to tell my boyfriend that something was majorly wrong even though my violent shakes had woken him up. I finally passed back out from complete exhaustion caused by this odd episode. I woke again an hour later to help my cousin get a Uhaul truck, so they could move and I felt horrid. I continued the day feeling as if all of the life was being drained from my body slowly, so I finally called my primary doctor, who was also the doctor who delivered my daughter. She told me to go to the emergency room immediately for a full set of tests. They first thought I was experiencing a pulmonary embolism, so I was put through all of those tests. The outcome showed nothing although they said my brain natriuretic peptide (BNP) was elevated, which at the time I had no clue what that meant. They never mentioned heart failure. I was sent home with no answers and still feeling horrid.

"They never mentioned heart failure. I was sent home with no answers and still feeling horrid."

That Monday I couldn't walk from my living room to my bathroom without feeling like I had run a marathon. I was starting to worry. I was on the phone with my step mother during one of these episodes of shortness of breath (SOB) and she told me to get to the hospital immediately. Upon arriving to the emergency room (a different one this time) the swelling in my ankles, legs, and feet had started to pit and I couldn't even recognize my own legs or feet. They ran the tests all over again and started an intravenous (IV) therapy with a strong dose of Lasix. I lost 40 pounds of water weight in one night. Upon returning home I received a call from the emergency room doctor who told me she made me an appointment with a cardiologist for the following Thursday and I was to receive an echocardiogram. I was extremely nervous and just cried and cried. I was too young to have heart problems and I had a new baby to worry about.

"She didn't waste any time, it was then on March 24, 2011 at 1:32 in the afternoon that I heard the words PULMONARY HYPERTENSION (PH) for the first time."

When Thursday came I was optimistic that they would find nothing and the lab work was wrong about the stress around my heart. I was very wrong. I got through the echocardiogram while watching the technician's facial expressions the entire time--I knew something was wrong. She informed me it was CRUCIAL to keep my appointment later that afternoon with the cardiologist. When the time came I walked into the exam room to see the cardiologist. Her expression was bleak and the butterflies were immediate. She didn't waste any time, it was then on March 24, 2011 at 1:32 in the afternoon that I heard the words PULMONARY HYPERTENSION (PH) for the first time. She had also told me I was in severe right sided heart failure. My entire body went numb and I couldn't think about anything but my children. It was then I heard bits and pieces of what she was talking about. She was saying words like transplants, 3-5 years to live, and hospitalization for a heart catheterization. I could barely grasp anything she was saying. I was 22 with 2 beautiful kids that need their mother and I can't die, I just can't!

"She was saying words like transplants, 3-5 years to live, and hospitalization for a heart catheterization. I could barely grasp anything she was saying. I was 22 with 2 beautiful kids that need their mother and I can't die, I just can't!"

She wanted me to go straight into the hospital from the visit, but I told her no. I wanted to be home with my kids for the night. She made an appointment for the next morning to get things started. I ended up in the hospital that night anyway. I guess the anxiety got the best of me. I had the heart catheterization the next day after a 6 min walk test and blood work. My catheter stated that my pressures were above 120 and that I was severely ill. I still don't think my mind was working all that well. I was set to see a specialist in St. Louis, which is about two hours away from my home, but the appointment took two months to make. It wasn't until I saw my amazing PH specialist for the first time that I got my first glimpse of hope. He didn't tell me I had an expiration date, he told me that I needed treatment and with the treatment I would slowly regain my life back.

"It wasn't until I saw my amazing PH specialist for the first time that I got my first glimpse of hope. He didn't tell me I had an expiration date, he told me that I needed treatment and with the treatment I would slowly regain my life back."

I have been on Adcirca and Letairis since June 2011 and I have been able to do just about everything I did before this nasty disease came into my life. I went from a functioning class 4 to a class 1 in a matter of a year. I am very proud of myself and my PH team for helping me get to where I am today. There have been bumps along the way and I know that there will be many more. But I will continue to fight because I am a warrior, not a victim. I was able to see my baby boy turn 4 and my sweet little girl turn 1. I plan on seeing many more birthdays to come. Sorry this was so long but this has been my journey so far. We are all empowered by hope. We are all warriors and survivors.

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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.