PROVO, Utah — Lehi resident Steve Bailey went to the gym with his wife, Merity, to walk the track. For Steve, who has the genetic condition alpha-1 antitrypsin deficiency, even just going to the gym and having energy to walk was a marked difference from earlier months.
After doing some walking, Steve said he felt like he needed to run the last lap, something he hadn’t done in five or six years since he started having difficulty breathing, a symptom of alpha-1.
“As ridiculous as it looked, it really felt good because I didn’t think I’d ever run again,” Steve said.
Running was a very difficult thing for Steve, who had a double lung transplant in July. His many hospital stays have decreased his leg muscles and he still has many medical issues because of alpha-1 and the transplant, reported the Daily Herald (http://bit.ly/2e0DjXY).
Merity said she saw her husband start running while she was working out and started to worry about him.
“I see him over there clutching something and I think it’s his heart,” she said. “So I ran over to him, but he ran. It was a hop, skip, jump type thing.”
“It was pathetic,” Steve said to his wife, commenting on how funny he must have looked.
“No, it was awesome,” Merity responded.
Maybe it was the day — he had just found out he was no longer rejecting the transplanted lungs — or something else, but Steve ran the last lap. It was worth it, he said.
Alpha-1 antitrypsin deficiency is a genetic condition where the liver doesn’t produce enough of a protein called antitrypsin, which helps protect the lungs on other organs.
Steve’s double lung transplant in July didn’t fix everything. At first, his lung function was in the high 90 percent range and he was able to do things he hadn’t for a while.
But then his lung function dropped back into the 80 percent range, a dramatic decrease. For several weeks, he took medicine and went to extra doctor visits.
Merity said she could see the effects of the rejection — familiar signs from the years spent fighting alpha-1 — coming back in late September.
“I see the different patterns coming back that he had before the transplant. I see the raccoon eyes coming back from before the transplant. I see the grey color coming back,” she said the day before Steve went in for another round of tests in late September.
After having a bronchoscopy and biopsy, where doctors look at the lungs and remove a small piece for testing, he finally got the good news that he wasn’t rejecting and his lung function was increasing.
After so many ups and downs, Steve said he’s learned to take every challenge one at a time and be prepared. He said he’s ready to move on to the next chapter and the next challenge.
“When I was told I was no longer rejecting, it was kind of the same reaction as when I found out I was rejecting,” he said. “‘It’s just the next chapter. We will deal with this now.”
Steve will have another bronchoscopy and biopsy in six weeks to check on his new lungs and how he is doing.
“I won’t have to worry for six weeks,” Merity said.
During the rejection, he found out he lost his job. Steve, who works in information and cybersecurity, said he has some leads on jobs but is still waiting to hear back.
“The transplant team encourages you to get back to work when you can, but they want to make sure you’re ready,” he said. “They want you to get back to your life as quick as possible. It’s about that time.”
Merity said the family has been incredibly blessed by all the help they have received from their community and people who found their story on Facebook.
While every day is special for them because they knew without a transplant he wouldn’t make it through the winter, it’s not without its struggles.
“He’s a young guy to have a double lung transplant,” Merity said.
The Baileys are holding an online auction from Oct. 11 to Oct. 17 to raise money to cover the cost of Steve’s medical bills and to help make ends meet at home.
Those that are interested in participating can get more information on Facebook in the Help Steve Breathe Online Auction group or can donate to their GoFundMe page.
Information from: The Daily Herald, http://www.heraldextra.com