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Patient story

Lindsay MoralesLindsay Morales

My name is Lindsay Morales and I am 25 years old. I was born in Guatemala. By the age of six I was diagnosed with Pulmonary Hypertension due to an un-repaired hole in my heart called a Ventricular Septal Defect. At that time there was no treatment and the best the doctors could do was to tell my parents and me that I would not be able to live past 10 years of age. Knowing that diagnosis, I lived hoping that one-day there would be a treatment and cure for my disease.

Then in 1997, I moved to the United States. That is when I met a group of doctors at North Shore University Hospital, a Cardiologist and Pulmonologist. Dr Arunabh Talwar , my Pulmonologist, initially started me on a drug called Tracleer and also, I had to start using supplemental Oxygen 24 hours a day. The doctors suggested that I needed a Heart and Lung Transplant to survive. In the beginning it was really hard for me to be compliant and follow-up with the doctors’ recommendations. It was hard for me to understand and realize that medicine, oxygen and transplant were the only solutions to my health problems. In my teen-age years, I took myself on and off my medical treatment for a couple of years. Then I started getting sicker because I didn’t realize Pulmonary Hypertension was that serious. When I found myself at the hospital constantly I realized that I needed to be more responsible and more faithful in taking care of my health. With God’s help and support from my family, I started my medical treatment again, only this time with different medications, one called Flolan (an internal infusion of medication that needs to be running 24 hour a day, for my life-time). I began the processes for me to be evaluated for a Heart and Lung Transplant. Only this time I was more serious and I really wanted to live at least past my 30th birthday.

A month after the Transplant testing processes began; I found out that I was pregnant. At that time it was very scary because I went through a lot of medications and tests that could have affected the fetus. I knew ever since I was a little girl that I couldn’t become pregnant because of the complication of the pregnancy and my Pulmonary Hypertension condition. It could have been fatal for the baby and me. When my doctors found out I was pregnant, their first suggestion was to terminate the pregnancy. But I couldn’t do that because in my heart I had the desire and hope to become a mother. Although we knew the risks involving me being pregnant, my boyfriend and I decided to keep the baby.

At the beginning, my doctors weren’t too happy with my decision because they just wantedJacob Morales the best for my health. Being pregnant wasn’t the healthiest choice but Dr. Talwar, my PH pulmonologist, my cardiologist and the rest of the OB team at North Shore University Hospital decided to support me. I was admitted to the hospital at the beginning of my 2nd trimester. While staying in the hospital, I was connected to a lot of IVs’, Heart monitors, and Oxygen. I was on bed-rest throughout my pregnancy, which helped keep my baby and me healthy. It was really hard but everyday was worth it. Although my health was poor we made it through the 28th week of gestation. On May 8th, 2005 at 4:23 and 6 seconds, my son Jacob was born healthy and strong. For the next two months we stayed in the hospital to recuperate.

Now two years later, I can say that, “this was the best experience of my life”. I wouldn’t be here today if it weren’t for God, the love, support and prayers from my family and friends, and for the great team of doctors at North Shore University Hospital, in Manhasset, New York.

For everything, I thank you all!!

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.