International Faces of PH

Shakeela NazShakeela Naz, Pakistan

My name is Shakeela Naz. I am a 23-year-old software engineer, and I live in Rawalpindi, Pakistan. I was born with Atrial Septal Defect (ASD) and skeletal anomalies in my left arm and both hands due to Holt-Oram Syndrome (which was inherited from my mother). At age 4, my ASD was repaired via an open-heart surgery. Life went smoothly afterwards, and I lived perfectly healthy for the next 14 years.

Because of my history, my parents were always very observant about any unusual shortness of breath, signs of turning blue, etc. So in 2003 when I started to get out of breath on my way home from school, I was taken for a checkup and was diagnosed via echocardiogram with right-heart enlargement. I was put on medication to reduce symptoms and monitored every four-to-six months. Still, I was easily able to climb three floors in a single go, without pausing for even a moment. I was a hyperactive and “always ready to help anyone” type of individual, and this did not change. Then pulmonary hypertension entered my life.

In December 2007 I started getting immensely tired and out of breath again. I was unable to walk even at a normal pace and ended up going suddenly unconscious right in the exam hall, just after I had handed over my final exam paper. By the time I was taken to the hospital, I was fully conscious and just feeling a bit weak. My blood pressure, sugar level and pulse rate were all found to be normal — everything seemed okay. Doctors advised holter monitoring, head-up tilt, and echocardiogram. All the test results were normal except the echocardiogram, which stated “severe pulmonary hypertension” in addition to the past diagnosis. Just last year I also got another tag on me, called Eisenmenger’s Syndrome.

Initially, PH gave me a really tough time. Life seemed to turn upside down. It was very hard to sit back and watch others play sports while I had to quit anything that could potentially exhaust me, and I had to get lots of rest. I stood in the middle: my dreams and aims on one hand and hard realities and fears on the other. Luckily, from the very beginning, I was interested in my studies more than anything else and this was something I could continue well by compromising other activities. I was still left with at least something of my interests: studying and teaching. It was a tradeoff; adapting to new circumstances in life involves a couple of tradeoffs — very much analogous to what we software engineers do with our software systems.

But PH has also had positive impacts. I realized that being intelligent and hardworking is not everything; one has to be good at management skills as well. Now that I have to spare even more time for myself, I am learning to manage things better. PH is teaching me one trait that I hadn’t previously learned, despite years of trying: patience. PH also made me proud of my sincere friends who always stayed there, even when I was engrossed by PH: not a single one left because of my disease. Friends, family members, doctors — everything does play a vital role in getting you through, but positive thinking matters the most. You remain alive and perfect as long as you think that you are. Somebody said, “When you think everything is over, you got yourself a new start ... !”

Despite all this disease stuff, I have been able to manage my studies well. When mild symptoms appeared, I was a tenth grade student. It was in the fourth semester of my B.S. in Software Engineering when my symptoms got intense, and by the end of sixth semester, I was completely lost — I was unable to walk even a few steps and fainted twice in university. Still I’m proud to say I completed my B.S. successfully, and was among the top 10 students of my class. This achievement was possible through staying positive, receiving immense moral support from my friends, parents and teachers, giving my full effort and leaving the rest to God Almighty. Now I am a regular student of M.S. Software Engineering, and I look forward to contributing something valuable to my field. My health has improved greatly, and most of the time people can’t tell that I have some health issues.

Coming back to normal life took time, patience, and a strong support system consisting of my parents, friends and great doctors. I love each one of them!

Sometimes I just wonder what life has got next for me. I think it’s time for a cure now!

 

 
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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.