Estella Medina is a Pulmonary Hypertension Association (PHA) support group leader from El Paso, Texas. She shares her pulmonary hypertension (PH) journey from diagnosis to volunteerism.
By Estella Medina
I was a medical assistant until I had my first child in July 2000. Since then, I’ve been a stay-at-home mom. I have two children here on earth and two in heaven. I’ve been married for 22 years. My family has been a great support to me since my PH diagnosis and with the loss of our last two children. My boys even help out with support group meetings. We had an addition to our family three years ago in the form of a pug. He has brought so much joy to our lives and some much needed comic relief.
When I was diagnosed in April 2015, I felt alone and scared. Initially, I was diagnosed with the wrong type of PH. My PH progressed for a year while I got the wrong treatment. Eventually, a cardiologist said I was ready for a heart and double lung transplant.
In March 2016, the cardiologist sent me to Houston for more testing. The tests revealed my correct diagnosis: idiopathic pulmonary arterial hypertension (PAH). I stayed there for eight days while starting my new medications. My doctor there, Bindu Akkanti, M.D., is amazing; she gave me information about PH and PHA Facebook support groups. At her urging, I opened a Facebook account and found the support I needed.
Finding and giving hope
Those groups gave me hope that I could actually live with this disease and be happy again. I no longer felt alone, and I wanted other people to have hope and knowledge of this scary disease. At first, I didn’t want to know, but with knowledge comes power. That is why I became a volunteer: to empower others and give them hope.
Dr. Akkanti was so pleased with how fast my treatments had helped me that she called me her success story. I asked her to share my phone number with patients whom she feels can relate to my story so I may talk to them about their struggles with this disease.
That’s when I first thought about being a volunteer. Dr. Akkanti gave my number to someone else from El Paso, and we talked on her way back home from Houston. She knew a person in El Paso with PAH who knew another, and we quickly became friends and started getting together.
Support group start-up
On those get-togethers, we talked about starting a support group. A few months later, I received a letter from PHA, asking me to become a support group leader. I reached out to PHA in October, and we had our first meeting in November 2018.
Dr. Akkanti also referred me to a local PH specialist, Hernando Garcia, M.D. He was instrumental in helping us start the El Paso Support Group.
I met the lovely Adriana Mares in February 2019. She is a medical student whose sights are set on being a cardiologist. I’m proud to call her my co-leader. It is amazing that she is so involved with our group and learning about PH. She will be a great doctor someday soon. She also motivates me to continue this volunteer role. She believes she will become a better doctor is she sees the patient’s side of PH.
The most rewarding part of volunteering is when people thank me after a meeting because they learned something new. It’s good to feel like the support group serves its purpose: to bring people together, empower us with knowledge and share our stories so we don’t feel misunderstood and alone.
The proudest moment I’ve had as a volunteer was in November 2018. Dr. Garcia and I went to City Hall to receive a proclamation for pulmonary hypertension awareness. Some members of the group were there, as well as my sister and eldest son. A person I didn’t know came up to me as I was walking back to my seat, proclamation in hand, to thank me for having this support group available in our city. Her sister had just passed away a few months ago from PH. It’s an amazing feeling how people come together for a common goal.
Meet people like Estella through a PHA support group or virtual meeting . Interested in becoming a PHA support group leader and supporting your local PH community? Submit an application. Questions? Contact us.