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Patient story

Belinda Shrestha

Hi! My name is Belinda and I was diagnosed with PH on 2004. I am currently on Flolan and Revatio. I am also taking some water pills for some extra fluids in my tummy.

Pulmonary hypertension has affected my whole life! My five year old little girl knows I am ill. I know deep inside she wants to cry, because she knows her mom is hurting. But she hides her emotions from me. It has been tough for me, because I love taking her places, spoiling her, and spending quality time with her. For me to keep up with her is tiresome. I used to feel hopeless, but now she is what keeps me going. She is my big helper and when there are times I am not able to walk she gives me a hand. I love her, so dearly!! She is very straightforward and has my attitude.

Every time I feel as if I need more time with her. I am her father and mother. Every day of my life I tell her that I love her and she gives me lots of loving (she calls it luvy-duvy). I am blessed to have her as my daughter. My mother takes care of my daughter. On the weekends I have two wonderful sisters that take turns watching my child when I am ill. They have been supporting me through this the whole time.

Cherish every moment by taking it one day at a time. It is hard to deal with PH, but I now everyone that has it is a fighter and we have to stay strong.

Ever since, I was diagnosed I have been going to our community PHA meetings. I take my family or friends, so they can be more aware of PH.

P.S.
I always have a smile no matter what!

 

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NORD

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.