Patient story

Dawn A. Smith

"Slow and Steady"
By Dawn A. Smith

"I am concerned about my future, but I cannot be afraid of something I have no control over. Having this disease is a fulltime job which you can embrace and try not to get totally frustrated with."

Dawn A. Smith

As a PH patient, I would like to share my journey to the place I am today. I have always been an independent person who believes she can do it all herself. This is a deficit when you have to ask for help because you can't do it all yourself. Life becomes easier and pleasurable when you can rely on others and find faith to help you to get through it.

In 1991 I married to the love of my life. At the end of the year in December I was diagnosed with colorectal cancer. In 2000, I had chemotherapy to shrink the tumor, radiation and then surgery to remove the tumor and lymph nodes to stop the cancer from spreading. I also chose to have a hysterectomy at the same time. This was a difficult time but my family and close friends where there as well as my husband.

By the end of 2001, I was having difficulty breathing, walking up the steps was a chore as well as I had a constant cough. I went to the pulmonologist and was diagnosed with sarcodosis. Sarcodosis is an auto immune disease that usually attacks African-American woman at the age of forty and usually their lungs. Scandinavians suffer from this disease, but it usually attacks the skin. My mom was helpful in making this diagnosis by remembering that my grandfather and uncle suffered the same symptoms. It appears it skipped a generation because my cousins suffered from sarcodosis also, but it attacked his eyes and now he is having problems with his lungs. My other cousin had it, but it has been in remission for years. There is no cure and the drugs I am prescribed are prednisone and methotrexate.

Dawn SmithIn 2002 a lump was in my left lung. We all hoped it was sarcodosis, but it was metastasis cancer. Oh no, stage 4 cancer means no more chemotherapy and no more radiation--only alternative medicine. I went to a wonderful surgeon Dr. Yang at Johns Hopkins University and he removed the upper left lobe of my lung. The family and friends were supportive. I believe in mental health support with therapy and medication to continue this uphill journey. Unfortunately, my husband betrayed me and the timing could not have been worse. His infidelity was a shock, but I knew that whatever his problem was I could not live with that type of stress in my life. My family and friends cocooned me and helped me through the next hurdle.

In 2003 my mom and I were on vacation in Atlantic City, NJ and an angel approached me and asked what was wrong with me. At the time I was on oxygen and using a wheelchair to get around. My angel suggested INOVA heart and lung program in Virginia to me because he was a lung transplant survivor. I went to INOVA and was diagnosed not only with sarcodosis, but also with pulmonary hypertension.

In 2005 I moved back to live with my parents and started Revatio. I really did not see any improvement in my condition until I started taking Remodulin. Unfortunately, in November 2008 my lung collapsed. I spent a few months in the hospital and my surgery was very dangerous, but I made it through. It took me two years to recuperate. I am taking Remodulin and Letaris for my PH. As a result during the procedure in the hospital I am no longer a candidate for a lung transplant. I have necrosis of the right hip from the years of taking steroids. I am hopeful to have hip replacement for more independence and mobility.

I am concerned about my future, but I cannot be afraid of something I have no control over. Having this disease is a fulltime job which you can embrace and try not to get totally frustrated with. This may sound tragic, but it is not. I have my wheelchair to get around and I continue to enjoy traveling—there is just a lot more planning involved. I still go to concerts out to dine and pretty much enjoy everything I am able to do, which I have to remember is a lot. I have always lived my life as every day was not promised. Now I live my life as every day is definitely not promised, so I live life and stop and pray when things get rough. I am blessed and strive to be happy every day.

A little update I received a hip replacement. I have no more excruciating pain in my hip and I can stand again. I'm working on walking again and soon I will be off of the morphine that I have been on for the last three years. A New Chapter "Slow and Steady".


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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.