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Patient story

Kiara Tatum

Hello my name is Kiara and I was diagnosed with Pulmonary Hypertension (PH) at the age of 26. I never heard of Pulmonary Hypertension before I had it. I have Idiopathic Pulmonary Artery Hypertension because there was no known cause of my PH.

When I first had symptoms of this illness in October 2005, I just thought it was nothing. I would feel the shortness of breath when I was exercising or going up the stairs. Because of the high demand of being an intensive case manager, I thought it was just stress. I continued my daily routines of going to the gym in the morning, to work during the day, and back to the gym or Jazzercise in the evening. Since PH is progressive, I noticed more changes occurring. I couldn’t walk short distances without stopping for a rest. I felt chest pains regularly. It felt like something was sitting on my chest all the time. I had to adjust my lifestyle. I didn’t work out as much because of the pain, but when I did, I would get dizzy and have to rest. I also had to adjust my work style. I had to come up with a way that I could be efficient but didn’t overexert myself.

My fingertips, lips, and toes were blue and always cold. I had to wear two pairs of gloves and I wore heavy men’s sock underneath my girlie socks. I eventually went to my primary care physician in December 2005 after a disaster trip to NYC with my family. I had the normal tests conducted such as x-rays, pulmonary function testing, blood work. However, nothing appeared to be wrong. My illness was getting worse, and I was feeling bad on a regular basis. It became more evident to my family, friends, and coworkers that something serious was happening to me.

On March 1, 2006, I went to the emergency room after having a long day of dizziness, not being able to eat, shortness of breath, and constant chest pains. My oldest sister brought me to ER after I told her that I was doing better and didn’t want to go the hospital. After lots of testing including EKG, lung scan, CAT scan, echocardiogram, and ultrasounds, the doctors discovered a hole in the heart. I was transferred to Albany Medical Center. At Albany Medical Center more tests were performed because the hole in the heart didn’t appear to be the cause of all my symptoms and I was continuing to get worse. I wasn’t allowed to move not even to get on the commode, so other bathroom methods were introduced. After the results came back from the right heart catheterization and other test, I was diagnosed with Pulmonary Hypertension. I was informed that without treatment, I had about a year to live. I was shocked and thank God my mother was with me because I was so confused. More tests were conducted to find out the cause of my illness since I didn’t take diet pills or smoked. No cause was found, which is common in PH patients. I had another battle to overcome and it wasn’t the illness. I had to adjust to a new life of changes. After almost spending the entire month of March 2006 in the hospital, I was sent home.

I had to take medication throughout the day and stay on oxygen 24/7 on 4lpm to 6lpm. I was so scared of what was happening to me. I was angry, depressed, and overwhelmed with so many emotions. I was constantly crying and asking God to not allow me to wake up the next morning. I didn’t want to live a life controlled by medication and not being to go back to the life I had. I had so many losses in my life like my job, independence, home, and my dignity. I didn’t want that life.

After months of adjustment from medication changes and emotional changes, I gained so much more than I had lost. I gained PHenomenal Hope. I built up my emotional strength; I received more love and support from family and friends than expected; I rediscovered my faith. I have bad days, but I have more good days because of the love, faith, strength, support, and hope I have and receive. Now I'm 28 and I’m on Tracleer, Revatio, Digoxin, Coumadin, Lisinopril, Synthroid, Celexa, and Oxygen. My mother helps with transportation to appointments as well as picking up medications. My sisters are always available to fill in for my mother. I'm organizing my first PH Special Event in November 2007 and I hope to do more events in the future. I want to become more involved in advocacy for PH education and research. And I'm ready to start spreading PH Awareness.

 

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NORD

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.