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Patient story

Tonya RobertsonTonya Robertson

Hi! My name is Tonya Robertson and I live in Madison, NC. I am a registered nurse; however, I no longer work because of health problems. I was diagnosed with pulmonary hypertension (PH) in June of 2001 after a cardiac cath. The heart doctor told my husband and I that my pressure in my pulmonary artery was elevated, but he did not think that ace inhibitors or calcium channel blockers would help me. Nothing was done about my PH at that time. I did not think much more about PH. As time passed, I continued to get short of breath with any exertion. In December I became severely short of breath at work, and my manager told me to go to the emergency room. I went to the ER where a chest x-ray, EKG, and blood work were done. The doctor just told me that he thought it was my PH causing the problem.

PH?? Hmm!

Why did I go to a cardiologist (heart doctor) in the first place? I was getting short of breath with exertion, walking up stairs and anytime I walked up an incline. I was getting sick almost passing out walking up my stairs. My legs were swelling. I went to my family doctor and complained of the above in April, 2001. He immediately got me an appointment with a cardiologist.

I went to the heart doctor in May and he ordered an echocardiogram. He also started me on a fluid pill due to the swelling in my legs. My pulmonary artery pressure (PAP) was found to be elevated on the echo. He then told me that I needed a cardiac catheterization (aka cardiac cath, a tube run into my heart to measure the pressure in my pulmonary artery). In June I had the cardiac cath. In December I had the episode at work where I became severely short of breath. When I went to the ER, the doctor told me to follow up with my heart doctor (it just so happened, I had an appointment for the next Friday). When I went to the heart doctor for that appointment, I told the doctor that I needed to be checked while being stressed, as opposed to at rest, because that seems to be the time that I have the worst symptoms. The doctor ordered a stress echo. I walked on a treadmill and then immediately had an echo. My PAP appeared to increase significantly. My cardiologist immediately referred me to a doctor that took care of patients with PH. In January 2002 I started being treated for PH by Dr. Duncan Hite at Wake Forest University Baptist Medical Center. The Fellow that worked with Dr. Hite told me about PHA.

PHA has helped me tremendously. I became a message board addict.

June 2002 I was started on Tracleer.

July 2002 I was started on Coumadin.

The Tracleer helped, and my PH symptoms improved. In March 2004 my symptoms of shortness of breath started worsening. In November my 6 minute walk test showed that my condition had clearly declined. My next appointment was in January 2005 and I was given the results of the above test and told that I needed to start thinking about starting Flolan or Remodulin. I was not a candidate for the subcutaneous Remodulin due to other health problems.

In February 2005, after much prayer and consideration, I started IV Remodulin. I felt like I had a new life. The next day my husband said he could tell a difference in me. Amazing! Today I continue to live with a line in my chest for my Remodulin to flow in. When my PH symptoms worsen, most of the time the PH doctor increases my medication. I am currently on 132 nanograms per kilogram per minute. I am very happy with the medication.

I am presently involved with PH awareness and I am the co-leader of the Piedmont Pulmonary Hypertension Support Group. Last week on November 20 I attended the Congressional Luncheon in Washington, DC. My 5th grade granddaughter Meleah Shelton spoke on life with a family member who has PH.

Even though I live with this disease, people are always telling me that I do not look sick. This is a common statement that most PH patients hear. I tell folks “well if I have to be sick, I am glad I can still look good.”

Happy Thanksgiving!!

In two days I will be 48 years old!! I am thankful for every day.

 

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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.