Tucked away under the trees at her Shelocta-area home, there’s a special place where Cathy Gould spends her days, writing poetry, reading and reflecting on the life she has now.
It’s where she gathers with friends, family and community members.
It’s a place to relax and appreciate the beauty of nature.
Her two-story treehouse, Hummingbird Haven, is one of her favorite places to be.
“It’s my sanctuary, my tranquility,” said Gould, 77.
A double-lung transplant survivor, the treehouse represents an item checked off Gould’s “bucket list” after a long struggle with Alpha-1 antitrypsin deficiency, a rare genetic condition that causes life-threatening lung disease.
A nurse, Gould’s journey with the disease began around age 30, when she noticed she was having some trouble breathing even though she was healthy, not a smoker and didn’t drink alcohol.
Visits to multiple doctors yielded a diagnosis of asthma. Gould did not agree with that assessment, but the answer as to what was really wrong would not come quickly.
As Gould got older, her undiagnosed condition started to worsen and she decided she had to figure out what was really wrong.
“I took matters into my own hands and went to the Cleveland Clinic,” she said.
It was there she received her diagnosis of Alpha-1, on April 16, 1999, at the age of 55.
The doctor told her it was fatal illness.
Gould’s condition declined in the years after her diagnosis.
Every little thing could be a trigger to making her labored breathing worse: perfume, smoke, other scents. She was on oxygen.
Not being able to breathe was an awful feeling to live with.
She said she spent “every moment, every second of my life, trying to breathe.”
Talking was hard. She couldn’t pray out loud. And she couldn’t cry about it, either. Crying made her too congested, intensifying her breathing problem.
Gould retired from teaching nursing in 1999, when she “looked 100 years old” and like she came “from a concentration camp,” she said.
As her disease progressed, she needed a caregiver, Mary L. Carlton.
“She took care of me for years,” Gould said. “If it wasn’t for her, I probably couldn’t have made it.”
There were dark days for Gould along the way.
At her lowest point, she weighed 79 pounds and had a 19 percent lung function. She said she wasn’t putting much fuel in her body. It hurt to feel full after eating, and she “was trying to help my body die.”
Her Catholic faith kept her from committing suicide.
“I begged God to please let me die,” she said.
She taught herself meditation and wrote poetry, something that she had been doing since she was a child.
“Writing brought me solace,” Gould said.
It also gave her a voice when she didn’t have much of one.
Gould was 68 years old when she received her transplant.
She had worked on the process to be added to the list over a period of years, but wasn’t hopeful that she would be selected for a transplant at her age. She knew there were younger people who had more of their lives left and were also waiting on organs.
It came together for her very quickly, however.
One day, on Oct. 15, 2011, she got a phone call. She knew it was important when they asked for “Helen,” which is her first name.
“No one calls me Helen,” she said.
The caller said Gould was being added to the transplant list.
But that wasn’t even the most important phone call she received that day, as the phone rang again, about an hour later, also for “Helen.”
This time, it was about a transplant: They might have lungs.
“I’m telling you, there’s a God above,” she said of the way her transplant worked out.
She rushed to UPMC Presbyterian Hospital in Pittsburgh from her home in Indiana.
“I knew God was with me,” Gould said. “I wasn’t at all afraid.”
If she died, she said, she would no longer be in pain. If she lived, she would be able to breathe.
Meanwhile, at the hospital, a man with a brain aneurysm was set to go into surgery for it to be repaired.
It was a risky surgery, she said, and the man was an organ donor. Both his blood type and antibodies matched Gould’s. There was a chance he wouldn’t make it.
Gould said the transplant team usually reaches out to three potential recipients when a match is found, but that day they only called her because of her close proximity. Because he was at the same hospital, the organs wouldn’t have to be transported.
The man’s aneurysm burst in surgery, and he was kept alive until the transplant, enabling the lungs to be directly placed into Gould.
“They took his lungs out and put his in mine,” she said. “That’s why I’m still living.”
The donor’s lungs were too large for Gould’s body and didn’t fit at first, but doctors worked to get them in, scraping down her chest.
When she woke up, she said she kept saying her back hurt, and they explained that was why.
But the important part was that the transplant was a success. She was alive.
Two weeks later, she was discharged.
In the next year, Gould recovered, staying near to the hospital for a period of time in order to be close by in case something happened.
As soon as she was healthy enough, she moved back to the area and returned to work in the field of nursing.
She’s been working in some way ever since, and is currently a privately retained caregiver. “I was so happy to have a second chance at life that I was going to help anytime I could,” she said.
Gould also immersed herself in the world of activism, learning everything she could and promoting awareness of Alpha-1.
Alpha-1 causes deficiency of a protein, alpha-1 antitrypsin, that protects the lungs from inflammation from irritants and infections. In patients, the liver can’t release the protein, which results in blood cells attacking healthy lung tissue.
She learned about the genetic components of the disease, which she said she got from her mother and father, who both would’ve been carriers and died of the disease. She also lost a brother and sister to Alpha-1, though her sister was the only one with a diagnosis when she passed away.
“I decided I was going to know this disease inside and out,” Gould said.
She became an Alpha-1 support group leader for western Pennsylvania for 14 years, and there was “a snowball effect from there.”
She received the highest award the group gives out for bringing about awareness of the disease — the Sandra K. Brandley Award from the Alpha-1 Association, in June 2012.
She testified on Capitol Hill in Washington, D.C., in 2013, fighting proposed changes to health care laws regarding pre-existing conditions that could have raised the price of the medication needed by Alpha-1 patients.
“I’m a fighter,” Gould said. “I think that’s why I’m still alive.”
Gould’s life has changed for the better in the years after her surgery.
While she still receives treatment — an IV infusion once a week for two hours — she feels better now at 77 than she did decades ago.
Her lung function is 140 percent.
And after having been quiet for so many years from being short of breath, she said friends tell her now that she never stops talking.
Gould moved into her current Shelocta home in 2012, a year after her transplant.
Hummingbird Haven was built in 2017, and Gould designed it herself.
It’s nestled in an area of trees, alongside a stream that she originally wanted to run underneath the elevated, two-story structure.
The treehouse reminds Gould of one she built with her father, whom she was very close to, as a child growing up in Ford City.
“I loved it,” she said. “I started writing then. Way back then.”
It was a place that she felt special and creative.
“I liked the solitude and tranquility,” she said.
When she got a second chance at life, she decided she wanted another treehouse.
Within the walls of Hummingbird Haven, Gould says the words for her poetry pour out.
A lifelong poet, she recently finished her third book of poems, “Treehouse Poetry,” which will be available at Indiana Floral & Flower Boutique in White Township, as well as through Gould and her friends.
She hopes to have a book signing at Staples in the near future, as well, when the book is complete.
“Treehouse Poetry” is a collection of 24 poems that she describes as “heartwarming.”
She draws on themes of nature, humanity and emotions.
Gould estimates she’s written more than 4,000 poems, and that her writing has “drastically changed since my transplant.”
Her newer poems reflect more reality than older ones, when she wrote about love through “rose-colored glasses.”
Her favorite poem from the new book is titled “Sister Replaced,” written for a friend who suffered the loss of a sister.
It’s “one of the best ones I’ve ever written,” she said.
She writes every day. “Sister Replaced” poured out in five minutes.
A person could live in Hummingbird Haven, as it offers a tiny kitchen and refrigerator, toilet, electric, heat and bedroom. She jokes that her retirement plan is to move from her main home into the tree house, and have a caregiver live in her “real” home to help.
The treehouse lives up to its name, having been decorated with a wide variety of hummingbird-themed knick-knacks, given to her as gifts from friends over the years.
A porch swing sits underneath the raised platform, complete with hummingbird carvings.
A grill and fire ring sit nearby for entertaining, something Gould said she loves to do.
She loves to share the charm of Hummingbird Haven with others, sometimes renting it out, saying it’s the perfect romantic getaway for a night.
She hired an Amish crew to build Hummingbird Haven, and the entire project took about six months in total.
“I’ve been in Seventh Heaven ever since,” she said.
Looking to the future, Gould says she wants to have no regrets and will continue to do “whatever I think I’m capable of doing.”
“I keep saying I’m going to give up nursing, but I don’t,” she said. “I just can’t give that up.”
She is an advocate for the older population.
“I will fight for their rights to live and have quality of life,” she said. “That’s one thing I’ve always done.”
She says she’s learned so much from Dottie Rezzolla, 100, for whom she provides care.
“Treehouse Poetry” is dedicated to Rezzolla.
Gould wants others to understand that older people “have got so much worth.”
“Even at my age, she’s teaching me things,” Gould said.
She’s happy knowing she makes a difference and says “if I can take care of one person and make them feel like there’s something in this world,” then that’s enough for her.
