Always with Faith, Determination, and Effort: Erika Prieto

December 27,2019

I am Erika Prieto, a life fighter since I was diagnosed with pulmonary arterial hypertension, a rare disease that dangerously affects the pulmonary arteries, heart, and lungs. After 10 years of living with PAH and educating myself as much as I could, the diagnosis has become less severe than in the beginning.

When I received the diagnosis after going through so many analyses, it was like seeing the light at the end of the tunnel. I thought it was over; we knew what I had. I could only say to the doctor, “Thank God, give me something so that I can heal.”

We then realized that it was such a different reality, and one that was not so simple. “The only cure is a double lung transplan,” was really disconcerting for me. When the symptoms appeared, the danger that is always stalking your life is really daunting and scary. Especially since the changes I was suffering not only affected me, but disturbed everything I loved: my son, my family, and most importantly, my body.

Months passed and I was put on the transplant list because the medications did not have much of an effect. My quality of life vanished like the air in my lungs when I became dependent on oxygen. Life does not warn you when you have to be brave, it just happens, and more frequently than we imagine. With this disease, each experience is different. I learned that after living with it and learning from other PH patients.

I decided to dedicate my life to achieve the recovery that every sick person craves, always with faith, determination, and effort. Now I live passionately every day and nourish my body and spirit, of course without forgetting how serious a disease like PAH is. It is a roller coaster of good days and not-so-good days. I finally learned from a friend who also has PAH to use these words, because I usually used the words bad days. You become aware that to get out of a crisis that affects your health, finances and environment, you need strength. In my case, that strength comes from God, my son, my family, and friends.

My social network is constantly filled with comments like, “You look super good,” or, “You don’t look sick.” It may seem so because I have always tried to make my life normal. I know that I have a health problem, but I can’t stay in bed every day; I have to take care of my health. It is true that I have days when I wake up with a headache or fatigue. Sometimes it gives me vertigo, or I experience other side effects of the treatment. I appreciate the good days and I have learned to appreciate the less-good days. Even if I feel bad, you get up and move on. If you are not be able to get up physically, you do it mentally. That makes a big difference.

If you ask me how I stand up in spite of the difficulties, I would tell you that it is my faith in God, and knowing that others look to me as a testimony of strength and of hope. Today one of my many desires is to be an instrument of God for others, so that they can maintain their faith and not lose hope while waiting for a cure. Something I am sure of is that if PAH does not make you strong, it makes you weak, and if it makes you weak, God makes you strong.

Erika is a recipient of the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.

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