Our Journeys

"I don't want sympathy; simply respect or understanding."

- Vonetta Grey

Patient Journey

Vonetta Grey

I was diagnosed with mild pulmonary hypertension (PH) January 10, 2010. To date, I am still fighting with my insurance company to obtain prior authorization for the approval of my medication. My physician feels the best path for treatment at this time is Tadalafil and my insurance seems to be playing doctor or God; I haven’t quite decided yet on what is best for me. Three months later I still haven’t had treatment and my first of many six minute walk tests are coming up next week along with my first follow up appointment.

It is difficult for people to understand why I can't do the things I used to do. I have reduced my work from 40 hours a week to 19 hours a week and I still have trouble keeping up. Housework or odd jobs at home are more of a thing of the past. Dizziness, fatigue and shortness of breath rule most of my days. The most frustrating part is definitely those who don't understand. I have multiple things wrong and they are all "INTERNAL" illnesses. SO, I get the,"if you exercised you would feel so much better," but before I was diagnosed with PH was on the elliptical for five minutes and felt that I was surely going to die. Others say, "you don't look sick to me!" You know something? You are not in my body; how could you possibly know what I am? I try to explain the symptoms and I get the "duh" response because people don’t understand how that could possibly be true.

I pray that one day everything will work out as God has planned for me. I just want to be there for my husband, my 18 year old son, and my extended family. We are all a close knit family and I really do treasure that. Family keeps us all strong. I want people to respect that, even though they may not understand. I don't need them to argue the point with me. I don't want sympathy; simply respect or understanding. I live my life exhausted daily and wonder what I will be able to do each day, if anything, like simply walking, climbing stairs, bending over to pick up something or breathing normally. I never know what the day may bring. Live, Love and Laugh....God is Good! God Bless...

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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.