CLARION, Pa. (EYT) – Sid Miles has a one-year anniversary coming in August, and he’s glad to be alive and able to breathe.

Miles struggled for 15 years with IPF (Idiopathic Pulmonary Fibrosis), a disease marked by progressive scarring of the lungs. The disease is called idiopathic because there is currently no known cause for IPF.  A lung transplant is the only way to cure the disease.

“My anniversary is coming up on August 27, and that’s kind of a big goal for anyone who goes through a transplant,” said Miles who received the transplant in Pittsburgh at UPMC’s Simmons Center for Interstitial Lung Disease.

“There are 1400 to 1500 lung transplants a year, and it’s really just been successful in the last 20 years.  It used to be people didn’t last more than two or three years with a lung transplant.  Once you get past the first year with the medications and everything you take, it means your survival rate has increased, and you’re going to make it three years, and if you make three years, it almost guarantees you’re going to make five years.  Getting through the first year is a big thing.”

Miles was diagnosed with IPF in 2000 and thinks he is one of the longest living persons with the disease.  A visit to Allegheny General Hospital at the time left him facing a projection of only six months to live.  Lung transplants had little success at that time.

“Somehow, by the miracle of the Lord, I was able to live with IPF longer than anyone,” said Miles.  “Usually, most IPF people only live two to three years.  Mine stabilized, and I was able to get along, but then my lungs collapsed in January 2015.  I went to the Mayo Clinic, the Cleveland Clinic, and everywhere looking for a miracle, and here the miracle was there right in my own backyard at UPMC.”

Clarion doctor Tim Brooks recognize the disease and knew Miles needed to go to a Center of Excellence.

“He’s the one that pushed me to Pittsburgh,” said Miles. “You kind of give up on things, worry about the success rates of transplants, and also see a lot of negative things on the Internet. I kept fighting the transplant thing and just couldn’t reason with it until I realized there’s just no other choice and transplant option starts looking better.”

Miles is the “Daddy” Project Manager of Terra Works owned by his three sons, Ryan, Kurt, and Theron, and couldn’t work much for two years before the transplant.

Sid with his son Ryan.

“I was out there, but I couldn’t get out of the car, and I couldn’t walk,” continued Miles.  “We had a job down at WRC, and the boys had to buy me an ATV. I kept it hindside my home garage, and I could just barely get out with my oxygen tanks, get into the ATV, drive it across the golf course and back roads and get over to the WRC site. I could drive around, roll down the window, and talk to the men and try to give them little pointers.  I would try to go to the meetings we had there and get out and walk up the steps and get inside.”

Miles was on a waiting list for a lung transplant at UPMC — one of about only 14 hospitals in the United States that do them — and wasn’t sure he would make it through August 27, 2015.

“On the day of the transplant, I just didn’t think I was going to make it that day,” said Miles. “It was a hot August day, and it took me four hours to get out of bed and just get dressed.  Four hours to get my pants and shirt on.  I couldn’t take showers any more and couldn’t do the simplest things.  My wife Debbie was told she had to keep me moving as much as she could.  We got the call that morning at 10:45 a.m.”     

“Here you are at the end of life, and you go in there that night, and they put the lungs into you.  Immediately, the next day this aura comes over you.  It’s just like …I don’t know how to explain it…it’s the transplant high…I don’t know how this feeling can come over you…there’s just nothing like it.  I’ve been through a lot better, but it’s something only transplant people can understand.”

My doctor and donor did everything

“All I did was get sick, and my doctor and my donor did everything else,” said Miles. “It was an end of life disease, and I was completely at the end stage of my life.  My donor dies and happens to check a little thing on his driver’s license, and he gives me these beautiful lungs, the doctors know how to put them in there, and they throw my disease in the garbage can, and I get this new life.”

“The Lord has a way of putting things in a row.  It just so happens I had the good UPMC insurance and the UPMC hospital in Pittsburgh that does the best transplants. All these miracles just lined up.”

The odds worked both ways for Miles.  Friends Mark Nolf, Steve Constable, and Miles grew up along the Redbank Creek, and the three of them, out of 1,400, were transplanted last year within 10 months.

“How strange can it be that three of us out of the 1400 transplants all of us lived and were raised within four miles of each other along the Redbank Creek, end up with IPF, and were all down to the last couple of days of life, and we all got transplanted at UPMC and now we’re all doing fine?” asked Miles.

Changing Plans

With his miraculous recovery, Miles also had to start thinking about changes in his life plan.

“Before you were just worried about paying your life insurance and trying to keep as much life insurance as you possibly can because you’re getting older and you’ve  a terminal disease, and it’s hard to keep the life insurance,” said Miles.  “Now, I don’t pay the life insurance, but it’s $10,000 a month for the drugs the rest of my life to keep me alive.  Now, your whole focus is trying to keep your insurances, and where I’m at right now at 63, but when I turn 65 and go into Medicare things change. It really hurts when you go on Medicare, and it’s a terrible system for transplant people.  I’ll probably have to pay at least $4,000 a month once I go on Medicare. I’ve got to keep on trying to work and keep this private UPMC insurance.”

Miles praises UPMC for the surgery and insurance that has kept him alive.  He also pointed out that UPMC is willing to take a risk and accepts high-risk patients who have been denied transplants at other hospitals.

Family

In addition to three sons, Sid and Debbie have another son, Sheldon, who is attending law school, and Kyla, a student at Mercyhurst University.