My PH Story: Socorro Rivera

November 14,2017

I have been living with the terminal disease known as Idiopathic Pulmonary Arterial Hypertension (IPAH). I have found there is little known about my condition. IPAH has impacted my life significantly. I feel as if part of my body is killing me, while the other part is fighting for my survival.

In the year 2014 I went to a follow up appointment with Dr. Carrera, and she asked me routine questions, for example, “Do you exercise?” My response was “A little, because I have shortness of breath and my heart races really fast”. The doctor stated she heard a third sound in my heart, she referred me to get an echocardiogram. In October 2014 I was unable to attend my echocardiogram appointment.

In January 2015 Dr. Carrera told me I needed to see a cardiologist as soon as possible. She told me I had Primary Pulmonary Hypertension, and that it was severe. In that same month I met my cardiologist, Dr. Shami. He did not waste any time; he quickly got me an appointment to get a right heart catheterization.

I had previously experienced allergic reactions to numbing agents, so I had to withstand and tolerate the extremely painful procedure without anesthesia or numbing agents of any kind. Dr. Shami has since performed three heart catheterization on me.

The first medication I was given after the procedure, Revatio (Viagra), was to help with high blood pressure in the lungs, but it gave me terrible headaches and flushing. Dr. Shami explained to me that due to my high pressure of my heart and lungs I would eventually need a heart and lung transplant. I was in such a state of shock that I wasn’t aware how I got to work that day after my appointment.

Months later after many different tests, I was referred to a pulmonologist, Dr. Herrnando Garcia. He is very knowledgeable regarding IPAH. Dr. Garcia has patients living with IPAH that have lived over twenty years. He referred me to Baylor St. Luke’s Hospital in Houston, Texas. I was evaluated to determine if I was a candidate for heart and lung transplant.

I am running out of options because I had already tried many IPAH therapies without being able to drop my pressures. On my current medication I have maintained high pressures; it has not improved or worsened. January 2018 will mark the third year I have been living and surviving with IPAH. The side effects caused by the medications can be tortuous. They keep me alive at a high cost.

I am thankful for my doctors; I feel they are my angels. Dr. Carrera did not make assumptions about my health condition. She made the correct choice by referring me to get the echocardiogram and to see a cardiologist. She has been a great support system. Dr. Shami moved to New York but still keeps in touch with me to make sure I’m OK. He is very encouraging and made me aware of what options were available in a very efficient manner. Dr. Garcia has been assisting me in finding the correct treatment for my condition. Dr. Garcia has been my guide and my advisor, and is a very outstanding human being.

I have very dark days when I see how my health condition hurts my love ones. It hurts my soul to see how my situation affects my mother. I will never experience pregnancy and motherhood. I feel robbed since I have a lot of limitations and will never be the same. I don’t want to be sick. I want to live without pain. Sometimes I feel hopeless. I feel the light fading and I get scared. I do not want to be a burden to my family, love ones.

Every bad situation leads to something beautiful. I am taking one day at a time. One breath at a time.

Jessica Almada Photography

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