Janet CecilOUR JOURNEYS

Patient story

Janet Cecil

Hi, my name is Janet Cecil. I was sent to a cardiologist after my OBGYN detected a heart murmur. The one thing that we all have in common is being misdiagnosed for so long and the lack of awareness of the symptoms of PH. Had I known them, maybe I would have put two and two together.

I went to my cardiologist’s office locally a total of four times. The last time I went, I was basically in tears because I had passed out numerous times while walking, walking up stairs, and sometimes while just getting up from a sitting position. He did an echocardiogram and detected something a bit strange about my pulmonary value. He immediately referred me to Baptist Hospital in Winston Salem. After two years of not knowing the diagnosis, Dr. Hite said he suspected PH but further test would have to done. He ordered an echocardiogram and a left heart cath.

Since I had never heard of it, I thought that PH couldn't be too serious. The shortness of breath, the heaviness of my chest, the swollen ankles, the extreme fatigue and lightheadedness were all attributed to this disease.

I'm 46 and I currently take Tracleer, Coumadin, Lexapro, potassium, traim/hctz for fluid, and in November 2007 I began my journey with IV Remodulin. I know now that it is important to make people aware of pulmonary hypertension and its symptoms.

The sad part is that this disease is easily diagnosed with an echocardiogram, but only if physicians listen to their patents. There are so many small children who have this disease.

I am currently getting involved with the Piedmont Triad PH Support Group. I recently attended the 2008 PH Conference in Houston TX…it was my first time going to Conference. I was so blessed to have been a part of it. I came away knowing it not just me, there are others with PH. There is research being done to find a cure. We just have to get the word out. Unlike cancers, Hodgkin’s disease and AIDS, not many people know about pulmonary hypertension, and yet the outcome of all is life-threatening! I just thank God each day for my breath even as short as it may be, I pray for a cure, and I know that He carries me as I make this journey....only one set of footprints in the sand!

 

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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.