Patient story

Chester Newby, Sr.

by Orina Alsip

The other day I submitted the story of my daughter Amber. This is the story of her grandfather, Chester Newby Sr. When I met him in 1993, he was a construction worker. He was a fun guy. Instead of a father-in-law he was like a father. While his son and I were dating they introduced me to Chester Sr.’s baby sister, Veronica, a PH patient. She was very ill and in need of a transplant. On June 24th, 1994, Chester Sr. was late to our wedding because veronica got her transplant. On June 9th, 1995, She passed away. But Chester was still going strong and working every day. In 1997 he started having trouble and not feeling well. He had to start working less, but doctors couldn't say why.

In early 1999, he was diagnosed with PPH. The doctors did not give him a good chance. In 2000, they told him he had six months to live. He has suffered heart failure numerous times and is not a candidate for transplant because he would not survive the surgery. The effect of the disease was compounded by the diagnosis of his youngest granddaughter, Amber, in 2003. He has had two stents put in, has diabetes and is losing his ability to walk - he can't walk room to room, or even go out on a warm day, but he is still fighting. He is preparing for Pulmonary Hypertension Awareness week in April and pushing on everyday. The reality is this is a family disease and it has only begun in this family. There are great chances that this disease will continue through the family.


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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.