Myriam's Story

By Myriam C

Myriam's Story

By Myriam C.

Editor's Note: Myriam is a 26 year old PAH patient. After living in Mexico most of her life, she moved to California two years ago. Since English is a Second Language for Myriam, the following has been edited slightly.

As Told By Myriam ....

I have had Pulmonary Hypertension since I was an infant. At 3 months old, I traveled from Puebla, Mexico to Boston to have surgery for an atrial septal defect – also known as a hole in my heart. Upon returning to Mexico, I saw Dr Fausto Attie, a cardiologist who diagnosed me with Pulmonary Hypertension. It is believed that my Pulmonary Hypertension is secondary, caused by my heart problem.

Because Puebla is quite industrialized and the altitude more than 5,000 feet, my family decided it was in the best interest of my health to move to Tijuana. As a child in Tijuana, I lived a fairly normal life. I remember being aware of the fact that I had an illness, but I was an active and happy child. I rode bicycle and played soccer. I only remember getting tired when I had to take the stairs, but for the most part, having an illness did not affect my life.

At the age of 10, I met Dr Susy Murillo, a cardiologist in Tijuana. She sees me for the care of my heart and lungs. She is still my cardiologist and she is my friend. I continue to see her when I'm sick, or I just want to speak about my illness. :-)

For treatment in Mexico, I was only prescribed Lasix and Coumadin. No other medications were available at that time, including Flolan. Of course, even if Flolan had been available it was too expensive for my family to afford. It seems too expensive for many families to afford!

At the age of 16, Susy (Dr Murillo) told my family and me that I was getting worse. She said I needed stronger medication for my illness and the best hope was the University of California at San Diego (UCSD). It was there, in 1997, that I met the angels in my road – Dr Richard Channick and Katty Kinninger. They have always helped me to find the best treatment and to live longer.

Beginning treatment was a really big change of lifestyle for me. Dr Channick began with Nitric Oxide, so I had to carry these huge tanks home to Tijuana from San Diego. I could wear a smaller tank to school, but the other students still looked at me strangely. My parents offered that I could stop my studies because of my illness, but I never gave up and I was able to graduate! I was fortunate to have such good friends in school who made my last year really easy. It's good to have friends that love you regardless of your illness. My friends and family have always supported me like that.

I continued to use Nitric Oxide for three years. It was tough because the majority of people in Mexico do not know of Pulmonary Hypertension. Later, Dr Channick offered me the option to take part in the research studies for Tracleer. I was so happy to say yes because it meant no more tanks! Tracleer is a wonderful drug and I am still using it today.

I was able to go to college. It was there, in 2001, that I met my lovely husband, an American citizen. He is a wonderful person, a wonderful caregiver, and loves me despite my illness. We dated for two years. My family loves him, as do I. We were set to be married in September 2003.

About a month before the wedding, Dr Channick told me that my heart was getting bigger and I needed a more powerful drug. My nurse Sandy introduced me to Gina Swak from Accredo. Gina Swak introduced me to Remodulin. Using Remodulin was a battle for me. I had already picked out my wedding dress, but had to change for a bigger size because of all the swelling Remodulin caused. My husband and I still had our wedding on September 13, 2003, along with my Remodulin pump. The first year was hard because of the site pain caused by the Remoulin.

Despite the battle, I'm strong and I was able to maintain a fairly normal life. I still work part-time. I have the support of Mr Alemany and Lesslye Flores who understand when I need to stay home a day because of my illness. I'm glad that I have a job that is easy enough for me to work and still feel productive.

My husband and my family are so important in my life. They help me out so much, especially on the bad days. My mother comes to help me cook and clean. My husband helps me to handle my medications; and my father always reminds me to take my medications, too. My brother brings things that he knows I love from back home in Puebla, since I'm unable to travel there due to the altitude.

In September 2005, I began to feel worse again. I had to switch to Flolan. It wasn't a tough decision for me. I heard so many good things about Flolan and I was more than happy to get rid of the pain from Remodulin. I have been on Flolan for a little over three months and I feel really good. I'm able to cook again and I have much more energy. It's amazing how much of a miracle drug Flolan was for me!

I am still in the process of being listed for Transplant, but we hope that with Flolan and Dr Channick's help that I won't need a transplant for many years to come.

At this point in my life I am very happy. I want to fight for a better understanding of Pulmonary Hypertension in Mexico and for government support for the illness. Our website is http://hapmx.ods.org. I would also like to take this space to say THANKS to all of the lovely people at PHCentral, the PHAssociation, Accredo, UCSD, my family, my friends and my husband for being a part of my life. You'll be a part of my life for many years to come. Like I've said, I am going to be the oldest patient of Dr Murillo and Dr Channick! :-)

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PHCentral is committed to the expression of diverse opinions from members of the PH Community.

We feel strongly that free and open discussion regarding PH will assist in the generation and the refinement of new and existing ideas. To that end, we provide the opportunity for anyone from the medical and patient communities to submit editorials, letters to the editor or short articles on a PH-related topic. We will be encouraging opposing points of view. Areas may include treatments, causes, advocacy, disability, etc.