Wednesday, July 23, 2014

A Young Woman Finds Inspiration from PH Patients in Fresno

About the interviewer: Divya Vijay is a high school student who volunteers with the pulmonary hypertension support group in her community.

She says, "My name is Divya Vijay, and I am currently a junior at Clovis North High School in Fresno, Calif. I have loved writing since I was a small child and have written many short stories and poems. My passion for writing and interacting with PH patients inspired me to put together these interviews documenting the struggles that patients overcome." 

Many healthy individuals, like me, take for granted walking through the mall with a couple of friends, running in the park in the bright sunlight, being able to fill our lungs comfortably after some hard exercise. However, these simple pleasures are denied to patients with pulmonary hypertension.

I had the pleasure of interviewing two incredible PH patients to learn more about them and this disease. My first interview was with a vivacious young woman, Latonya Smith, who was diagnosed in 2010. She sat, smiling brightly at me, as though nothing at all was wrong, and spoke with a vibrant, confident tone that surprised me.

Me: When did you first…
Latonya: You probably want to know the whole story from the beginning, right? Let me tell you. It took a long time for me to find out about my condition. I was always busy, worked two jobs, and so I thought it was natural when I began feeling exhausted. But after two years of constant work, I ended up in the hospital because of heart problems and spent the next two years after that shuttling back and forth between the hospital and home.

Me: How did you feel when you were first diagnosed?
Latonya: I was very scared. I thought I was dying, that life would never be the same. I was afraid of being crippled and how that would affect my lifestyle. I was depressed and I cried a lot. I got all my medication and went straight back to work. However, soon after my diagnosis, I lost my job and insurance, I could barely walk, and I ended up on an ambulance to return to the hospital after two years.

Me: What did you learn from your trying experiences?
Latonya: You need a good doctor. A good doctor and good medicine and people to look after you equal a good lifestyle. I’m now able to take care of myself, I have support from my family, and Mom is always checking on me.

Me: What advice do you have for other patients with pulmonary hypertension?
Latonya: Well, I know firsthand the experience of embarrassment from being so exhausted and breathing hard after climbing a flight of stairs in front of other people. But honestly, you can get past it. I’m going back to school and changing my career. I’m not afraid of living with a disability. I feel like I’ve got a lot of years ahead of me.

Listening to her cheerful, happy-go-lucky way of speaking, I couldn’t help but admire the resilience of this woman. She didn’t ask for or want sympathy; she wanted to live a normal life and was accomplishing her goals.

I also interviewed Perry Mamigonian, who was diagnosed in 2009 and who is an activist in the PH community.

Me: How did you feel when you were first diagnosed?
Perry: At first I was relieved that I finally knew what my medical condition was, and I accepted the challenge of dealing with pumps and medications. But, two months after my diagnosis, I started getting angry. I wasn’t working; I didn’t want to go out in public. I didn’t want to tell anyone what was happening to me.

Me: How did you overcome your challenges?
Perry: With the help of my extremely supportive family. They were there during my diagnosis; they did the research to see what was the best course of action for me. My sister helped me with my pump and medication changes and took me to my appointments; I was well taken care of.

Me: What is your advice to all the pulmonary hypertension patients out there?
Perry: Take advantage of the resources available to you. Connect with other patients. When you’re first diagnosed, you have no idea what you’re dealing with; seeking more experienced patients helps you understand the process. Get educated about your condition. And most of all, don’t let it get the better of you.

Fear is the root of doubts and insecurities. Perry lived with his symptoms for eight years before a car crash ultimately forced him to seek medical attention. A life-changing, rare, terminal illness like pulmonary hypertension should not be faced alone.

The PH support group in Fresno, Calif., of which these patients are members, is a therapeutic way for people to interact with others going through the same trials as themselves. I see the long-term survivors, veterans of the disease, and the newcomers, scared and vulnerable, timidly stepping into the welcoming circle. The presence of older patients seems to really speak volumes of comfort to those who are just beginning the journey. Some experienced patients have an amazing amount of medical knowledge – they could be doctors! It is really admirable, the way that these resilient fighters are so determined to overcome their challenges. Says Leona Welker, PH patient as of 2012, “I think of my PH as fighting a war, and the doctors are my generals, helping me fight off the disease.”

I find these patients truly inspirational as they live with this disease and stay positive, even though it prevents them from doing some of the things they love. For example, Lydia Moreno-Osorio, diagnosed in 2011, says, “I love being outdoors, but now I can’t do it during the day. I can’t walk without getting tired and exhausted. PH stops me from planning trips.”

Support groups like the group in Fresno serve as beacons of hope. Perry, a co-leader in the Fresno group, says, “The PH support group is the most satisfying aspect of the whole thing. It offers help to newly diagnosed patients and gives them the education, knowledge, and support to get through the days. It serves as a chance for patients to talk to others who are going through the same challenges they are. It’s a very welcoming and informative group.”

Latonya Smith says, “It feels good being around people like you who are living their lives.”
Hearing these patients speak, I couldn’t help but understand the insignificance of my petty problems. These wonderful people accept their challenges, put a smile on their face, and continue onwards as if it were just another part of life. They are independent, but know when to ask for help. They are dependent on their medications, but know how to find happiness in the little things in life. And that, to me, is the most valuable quality of all.

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