Surviving as a Long Term PAH Patient: Carmen Lozada

August 07,2020

My story as a long-term PAH patient started 12 and a half years ago. It is a story that from the beginning has had good and bad experiences, moments of learning, and different emotions. But the most important thing is that this journey has transformed me into a strong and positive woman who will PHight until we will have a cure for this disease.

I was diagnosed with PAH at a very advanced stage (Class IV) in July 2007 in Puerto Rico after I presented severe symptoms for six months. This condition was totally unknown to me. I was evaluated by several doctors, including pulmonologists, neurologists, and cardiologists in the ICU after three episodes of syncope. I was treated without any improvement, and my symptoms worsened. That is why it was recommended for me to be evaluated in the United States at a hospital or a PH center so I could be considered for a lung and heart transplant.

In November 2008 I arrived in New York City. After a complete evaluation at the New York Presbyterian Hospital that included all the necessary studies for an accurate diagnosis, my diagnosis was confirmed: primary idiopathic pulmonary hypertension. The pulmonologist recommended starting new medications for this rare and invisible disease. Then being in a non-acceptance feeling, little by little, I needed to be conscious of the changes I was about to experience (weight loss, diet and lifestyle change, medications, and frequent doctor appointments).

Gradually, I began to improve and I felt more able to carry out the necessary tasks in my daily life. In the beginning of 2009 I decided to find true and certain information about PH because I didn’t want to continue living alone with the disease. I decided to educate and advocate for myself, so I started to participate in different support groups. I was able to see how many people were living a normal life with PH. At the same time, I felt that other people who were diagnosed with PH needed help to understand, accept, deal with, and survive their daily life with PH.

Since October 2011, I have had the honor to lead the first and only Hispanic support group for patients with PH in NYC, mainly because language is one of the barriers that the Spanish speaking population have. I became involved to bring awareness and spread the word around the PH community. I volunteered in different ways like translating for Spanish speakers, being a speaker on Spanish sessions, educating and raising awareness of PH throughout the Hispanic population and bringing support through phone and email communications.

The COVID-19 pandemic has affected me in needing to cope with isolation, stress, anxiety, and fear of what could happen to me, since I am part of the vulnerable group. I am scared to go outside and be infected. I will take all the necessary precautions, what manner is necessary. For the last few months I have had to prioritize and adjust things for my well being in my daily life. Each day I try to do all that I can to remain positive throughout this difficult situation. I am thankful that I have a wonderful PH support system through my family and friends, health professionals, specialized pharmacies, and organizations within the PH community; I will survive this pandemic. I am confident about it.

For the time being I have had to learn to let go of my old normal to cope with my PH diagnosis and the COVID-19 pandemic, but I feel that I can serve as a motivational and inspirational person for other patients who do not accept their situation. I am pleased with the work done so far and seeing how others PH warriors could maintain a better quality of life. Despite having PH, every day I feel blessed.

Carmen received COVID-19 relief funds from 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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