As the anniversary of her double lung transplant passed, Crystal Chilcote spent the day with her daughter getting lunch and shopping. While these may seem like normal, everyday tasks for the average person, simply walking to her mailbox was not an option for Chilcote, a 53-year-old Lancaster (Pennsylvania) resident who was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) and developed emphysema from the disorder at the age of 38.
"I noticed some symptoms in 2001. I started noticing that I was extra tired, like after bathing, walking, cleaning," she said. "I had to stop to take a lot of breaks. And then I found out after a wreck that I had emphysema," says Chilcote.
While she'd smoked for 12 years, Chilcote said people usually don't end up with emphysema from smoking a few years. Before her diagnosis, she'd brushed the symptoms off, thinking she was just out of shape. The diagnosis brought with it feelings of fear, frustration, and sadness. Friends who were initially there for her faded into the background.
While she was initially diagnosed in Lancaster, through a series of events, she made her way to Ohio State's lung transplant clinic and eventually the Cleveland Clinic. From the time of her diagnosis, it took 14 years to be placed on the national waiting list for organ transplants.
"I was on oxygen 24 hours a day," she remembered, describing herself as "basically tethered to a machine."
Toward the end of her wait for a transplant, she couldn’t use a portable oxygen tank because they only held so many liters. When she needed to go somewhere, she toted anywhere from six to eight e-tanks with her at a time.
"At first, I was wondering if I was going to get listed because it took so long," she said. "I was kind of losing hope. And then I kind of pushed to be listed. I wanted to be on that list. Even with the low allocation score, at least, if something came up, I'd be listed."
Those in need of an organ transplant are given what's called an allocation score, which ranges from the 30s to 100. A lower number puts a person at the bottom of the list, and a higher one means the person's need is very critical.
Jessica Peterson, media and public relations coordinator for Lifeline of Ohio, said the matching process can be complex, explaining a person must be sick enough for a transplant, but not sick enough they'll die if they receive a transplant. And the criteria a person needs to meet to donate their organs only happens in 1% of deaths, she added.
On Jan. 27, 2017, Chilcote received a call from the Cleveland Clinic that the time had come to have her double lung transplant.
"It was emotional, of course, for everyone," she said, going on to tell how her family had been allowed to go with her right until she was wheeled into the surgery room. She remembered noticing her breathing was different right away.
Now a year following the transplant surgery, Chilcote said she feels normal. She's able to clean and not gasp for air. She can spend time with her daughter and son-in-law without needing help. She described it as being reborn and a second chance at life to spend with her five-year-old granddaughter.
Since the surgery, Chilcote has received two letters from her donor's family. She plans to write her donor's family, but in the meantime, she'd like to tell them she appreciates the man being so generous in saying yes to organ donation. She also hopes to release a balloon in his memory every year.
The fact Chilcote can say thank you and let them know, Peterson told her, is enough. She added that the fact she's able to respond to their letters means their loved one is still here.
Ohioans can register as an organ donor through www.lifelineofohio.org or register when they renew their driver's license at their local BMV. They can also complete a Donor Registry Enrollment Form by calling 800-525-5667.
Source: Lancaster Eagle-Gazette