Seven years ago, John Taylor of Cordova was diagnosed with idiopathic pulmonary fibrosis.
“I had never heard of that, didn’t understand what it meant,” said Taylor.
Idiopathic pulmonary fibrosis is scarring or thickening of the lungs without a known cause. No one knows what causes pulmonary fibrosis or why some people get it. It causes the lungs to become scarred and stiffened. This stiffening may make it increasingly difficult to breathe. In some people the disease gets worse quickly, but other people have little worsening of the disease over time.
Taylor needs new lungs, and his family and friends are planning a fund-raising event for him this Monday in Rockingham.
Taylor went to his family doctor in 2004 for what he thought was a simple cough. He was then informed that he had scarring in his lungs, and was referred to a specialist in Pinehurst.
Since being diagnosed, the retired U.S. Army First Sergeant has experienced a health decline like nothing he could have imagined.
“It’s something you can’t really understand unless it happens to you,” he said. “When you can’t get your breath — when you can’t breath — it’s just awful,” he said.
It wasn’t until last year that oxygen machines became a necessity.
“I started out on five liters of oxygen, but now I’m using 15 liters a day,” he said. “Everywhere I go, I have to drag the machines behind me.”
Even with the machines, he has to be careful not to get winded — which happens with very little exertion.
“I have to stop and sit a lot,” he said.
“We’re used to seeing daddy working out in the yard, and doing things around the house,” said daughter Chapelle Williams. “Now he gives out just going from one room to the next.”
The disease has reached the point that Taylor, now 66, has begun some pre-procedures for potential lung transplant patients.
“I’m still waiting to get on the waiting list,” he said. “I don’t really know how good my chances are, since I’m 66.”
Taylor was told last year that it’s time for him to start preparing for the possibility, because that’s his only hope.
“I’ve met with the transplant team at Chapel Hill,” he said. “I do a conference call every other Friday to talk with other patients who are either waiting or have had transplants. That’s part of the procedure, if you don’t meet the conditions and let them know you’re serious then you won’t even be considered.”
He participates in pulmonary rehab three times a week, though it doesn’t improve his condition.
“I have to do everything possible in case the time comes for me to get a lung transplant,” he said. “I’ve never had a major operation, and this is scary.”
In addition to his health crisis, Taylor and his family are facing an operation that will cause a major financial impact.
A lung transplant costs about $550,000, according to the National Foundation for Transplants.
“My insurance will cover much of the operation,” said Taylor. “The medications after the operation will cost about $3,000 per month.”
For the rest of his life, he will need follow-up care and anti-rejection medications.
“I’ve been advised that if I need to try and raise extra money, the time to do it is now and not after the surgery,” he said.
A husband, father and grandfather, Taylor is hoping for the chance to spend many more years with his family.
Family and friends have organized a fundraiser at Smithfield’s Chicken and Barbecue, on Hwy 74 in Rockingham. Proceeds from plate sales on Monday, from 5 to 8 p.m., will be donated to the cause.
Donations can be sent directly to:
National Foundation for Transplants
North Carolina Transplant Fund
In Honor of John Taylor (in the memo line)
5350 Poplar Avenue, Suite 430
Memphis, TN 38119
or online at www.transplants.org.
— Staff Writer Kelli Easterling can be reached at 910-997-3111, ext. 18, or by email at keasterling@heartlandpublications.com.
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