‘It’s been so worth it’

Slow down, step back and “just BREATHE…”

It’s been 16 years since Jacki Castonguay felt what it’s like to take a deep breath and just live.

On the one-year anniversary (or double lungaversary as she puts it) of receiving her new set of lungs, Jacki said she’s so grateful to be able to wake up each day and face whatever it holds.

Diagnosed with hereditary interstitial lung disease and pulmonary fibrosis, along with four other autoimmune disorders, Jacki has spent many years fighting battles often unknown to those around her.

After being on the transplant list off and on since 2015, Jacki received the call she’d been dreaming of for so long…and she almost didn’t answer it.

She actually declined the first call while playing games and relishing time spent with her husband, Darin, their daughter, Madison, and son, Logan, who were 22 1/2 and 19 years old, respectively, at the time.

The second time the phone rang, Jacki realized it was her doctor’s office and picked up immediately.

“I got the phone call at 7:22 in the evening on Oct. 6 of last year and it was a guy named Sam,” Jacki said. “He said, ‘We’ve got a set of lungs for you.’”

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Before receiving that life-changing phone call, a lot had occurred in Jacki’s and her family’s life to bring her to this point.

In her mid-30s, Jacki was working as an oncology nurse and Darin was farming and employed at Pioneer Telephone, all the while they were raising their 7-year-old daughter and 3 1/2-year-old son.

On an ordinary day, Jacki said she was mowing the lawn at their farm when suddenly she began to have difficulty breathing.

A doctor’s appointment led to a diagnosis of walking pneumonia, followed by a hospitalization where she was put on intravenous steroids.

However, as time passed, she wasn’t getting any better, she said.

Jacki was referred to a pulmonologist who told her, “Your breathing tests are low and the steroids aren’t working; you’ve got something going on.”

At first they told her she had “BOOP,” which is an inflammation and irritation of the lungs, Jacki said, but eventually she would learn it was much worse.

She had interstitial lung disease and had developed pulmonary fibrosis (or scarring of the lungs) which leads to lack of oxygen, shortness of breath, extreme tiredness and weakness and various other problems.

Additionally, Jacki also began to develop pain “from head to toe,” she said, and was diagnosed with dermatomyositis, an autoimmune disorder causing skin and muscle inflammation.

With her nursing background, Jacki suggested it might be Rocky Mountain spotted fever, as it displayed many of the same symptoms.

“We wish it was, but it’s not...,” her rheumatologist told her.

To suppress her overactive immune system and calm the inflammation in her body, Jacki underwent six months of chemotherapy and was put on anti-rejection drugs, she said.

It became a constant battle of varying degrees from that point forward.

In 2015, with the progression of the diseases and the toxic side effects of the drugs used to fight them, Jacki was no longer able to work as a nurse where she was serving as a case manager at Mercy Hospital Kingfisher.

“It was what I knew and loved, but I was in bed all day long because I was exhausted and in so much pain,” Jacki said.

While Jacki was just trying to survive, life all around her carried on and her children were growing up.

When she was able, she attended their activities, but missed so much of their lives, she said.

“When I see all the photos I took, there were tons before they reached 7 and 3 1/2 years old, then there is this gap,” Jacki said.

“My husband did all he could do to raise the kids, take them to school, pick them up and earn a living,” she said.

“I missed my life, but I couldn’t move…I was so sick.”

During those years, Jacki said she was barely able to get around due to the effects of the medicines and the disease progression and was just slowly getting worse until she needed new lungs.

“I’ve been sick so long that my kids were raised by the time I got them,” she said.

“I was there, but I wasn’t, and I’ve been dealing with a lot of grief about that.”

In order to be put on the transplant list at that time, Jacki said a lung allocation score (LAS) was used which took into account an individual’s age, weight, lab results, likelihood of survival and other factors.

As her LAS rose from 34 to 63, on Aug. 28, 2022, Jacki was placed at the top of the list for a lung transplant for pulmonary fibrosis patients at UT Southwestern William P. Clements Jr. University Hospital in Dallas.

Not truly realizing how dire her situation was before she received the phone call, Jacki said at that time she had just taken a shower and with her supplemental oxygen level set at 24 liters, her body’s oxygen saturation was only 59 percent. (A normal rate would be 2-3 liters to achieve an optimum oxygen level of 90-100 percent, she said.)

“I didn’t know how bad I was and the next step, if I wouldn’t have received the phone call, was to put me on an ECMO machine which is hooked up to your heart and lungs to sustain their function until you can hopefully receive a transplant,” she said.

After an eight-hour surgery, Jacki said she was in the intensive care unit for four days, then placed in a hospital room for three weeks followed by a week of inpatient rehabilitation.

Once released from the hospital, Jacki and Darin stayed in a nearby hotel for four months while she was recovering. During that time, Darin was her constant and loyal caregiver, along with her mother, Carol Schroeder, filling in on occasion.

In those first three months, Jacki said her body began to reject the new lungs on two separate occasions and she was readmitted to the hospital numerous times, but doctors were able to fight the rejection and complications by increasing steroid dosages and using different anti-rejection drugs.

She was ultimately given the green light to return home in April.

Donating her original lungs for pulmonary fibrosis research, Jacki said she hopes it may allow someone else to be diagnosed earlier and receive treatment when the disease is less severe.

“I don’t have pulmonary fibrosis anymore because it left with the lungs and I’m keeping the other diagnoses at bay with medicines,” she said.

Another complicating factor of the anti-rejection drugs is a significantly increased risk of developing skin cancer and other types of cancer, she said.

With the toxic side effects of the drugs, Jacki said it’s never going to be perfect, but she’s “learning to deal with it and it could be worse.”

While Jacki was recovering, her daughter had t-shirts printed saying “Organ Donors Save Lives” on the front and “#Team Jacki - Double Lung Transplant Survivor” on the back. Standing together with Jacki and her family, many friends, family members and people of the community purchased the t-shirts with proceeds benefiting the organ procurement center.

With the transplant costing over $1 million, along with the additional expenses, Jacki said that most people don’t realize how much it costs until they’re put in that situation and she is blessed to have insurance.

“Initially they told me I was a poster child and one of the best candidates (for the transplant),” Jacki said. “I’ve had a lot of problems since I’ve had my transplant, but I’d do it again in a heartbeat…I’d do it for one day.

“It’s amazing what it does to a person who’s been down and out for so long.”

Knowing there was going to be some bad with the good and it wasn’t going to be easy, Jacki said she and Darin continually remind each other to be “thankful for today, it could be so much worse.”

Her goals kept her going all those years, Jacki said.

“I’ve got to see my son graduate from high school and I could already envision my daughter getting married,” Jacki said. “I knew that was something I was going to see.

“I’ve envisioned grandbabies, so I don’t think God is done with me and He’s got a plan…I don’t know what it is because I sure have a lot of ups and downs.”

Just this month Jacki was able to see one of those goals realized at her daughter Madison’s wedding to Ty Stover.

“At the wedding celebration, Darin was ready to go home around 12:45 a.m.,” Jacki said, “but I told him, I’ve waited for this since she was born.

“I stayed until 2:15 a.m. when they turned off the lights.”

Exhausted the next day, Jacki said she slept the whole day, but it was so worth it.

Expressing her overwhelming gratitude to all those within the community who’ve blessed her and her family throughout all the difficult times, Jacki said, “The love from this community has just been incredible showing their appreciation for what we were going through with so many gifts, food, cards, donations, prayers, texts, calls and love…this story is about me, but it’s so much more.”

Also thinking about her immediate family - her mom, husband, son and daughter - Jacki said, “What they went through I will never know.

“I’m so appreciative and they need to hear it…thanks for helping me out guys.”

With the recent one-year anniversary of the transplant, Jacki said it’s recommended that she write a letter to the donor’s family.

“I don’t even know what to say,” she said with tears welling up. “I got time with my husband and time with my kids.

“It hasn’t been easy, but it’s been so worth it.”

With her new lungs came many new restrictions such as no large crowds, no straws, no ice, no tap water, no raw meat, no raw eggs, no pomegranate or grapefruit juice, no fresh flowers, no digging in the dirt…but she’s grateful for the simple things, Jacki said, and has so much more love to give and pay it forward.

She hopes someday to be able to return to her passion of being a nurse, but is taking one day at a time, she said.

With a new life and new perspective, Jacki said there’s so much more to life than the drama and the things that go on.

“I think the ‘be kind’ motto is huge, because nobody knows what you’re going through today,” she said.

On the thought of paying it forward, Jacki said she hopes people will consider being an organ donor.

“Put that little red heart on your driver’s license… you can save eight lives,” she said.

Despite the many ups and downs, Jacki said she’s so grateful for the new life she’s been given. She wakes up thanking God for every day and the opportunity to heal, live…and just breathe.

“I don’t know what the future is going to hold, but I guarantee I’m going to work hard for it,” Jacki said.

“I want to show the donor how appreciative I am and I want to do it for myself and my family.”

Jacki shared the following poem: Pause For just a second. A moment.

And be grateful.

Even if life isn’t perfect. But thankful for the life you get to live.

For the stories.

For the adventure. and for those you are blessed to love. Pause.

— Rachel Marie Martin