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how caring for a husband with pulmonary fibrosis changed a nurse's life
as a nurse for 42 years, heidi schollenberg has cared for a lot of people—but she didn’t expect to be a caregiver for her husband
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heidi schollenberg, here with her granddaughter and husband brad, is a nurse in a cancer clinic as well as caregiver for husband who had a lung transplant after declining from pulmonary fibrosis.
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as a nurse for 42 years, heidi schollenberg has cared for a lot of people. but she didn’t expect to be a caregiver for her husband.
“i work in oncology,” she says of the last 22 years. her first 20 were in the emergency room. “this past weekend, i had two patients come in who looked like they were dying. they were with their spouses. and i kept thinking, ‘ok, i totally understand what these women are going through with their husbands.’”
declining health is now a part of her personal life as well as her days working at the hospital.
her husband, brad, was an active and clean-living 62-year-old when heidi noticed that he was slowing down. he was a pastor who never came home for lunch, preferring to work through for his 12 hours. but then he’d come home and was falling asleep in his chair, which wasn’t his usual robust self—and heidi knows him inside-out. they’ve been together for 47 years. she was 15 when she met him and he was her first boyfriend. now they have four children and 11 grandkids who all live within five minutes of their winnipeg home. they worked hard to create a wonderful life, and heidi, 62, expected their retirement years together to be spent enjoying family and travel.
the first signs of pulmonary fibrosis
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but things suddenly went downhill. “he started coughing, and it was a weird cough. it was right at the beginning of covid coming into 2022. he could never see a doctor, and they told him over the phone, ‘well, you must have asthma, so we’ll give you inhalers.’”
when he finally got to see his doctor in person, they suspected pulmonary fibrosis, a lung disease that causes shortness of breath and fatigue because lung tissue is damaged and scarred. lungs need to be elastic so they can expand, but when the tissue is stiff and thick from scarring, breathing becomes challenging. with pulmonary fibrosis, medication and a healthy lifestyle keep some people stable, while the condition progresses much faster in others, like brad.
“i was a little shocked, our whole family was,” she says of the news. “when you start looking things up, there’s a danger in that because they give you different prognoses, and he was really not well. i worried, ‘is this going to be the end, or what’s happening?’” she credits the medical team and especially his respirologist for excellent care and a short wait for the imaging scan to confirm the diagnosis. she quickly moved from shock to action to get informed and joined a support group that was started by the wife of the respirologist.
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caregivers need support in pulmonary fibrosis
having her family close, some good friends to spend time with and the support group have been instrumental in keeping her going. “the support group is such a good thing for people to be involved with. not only the connections, but also the teaching that was done where they bring in speakers.” alternate months are for shared personal stories so they can understand the realities of others in their shoes.
the group is now about 60 members who meet in person in the church recreation hall. heidi and brad are the youngest couple in the group, because there are a lot of older people with pulmonary fibrosis, she says. while brad decided to step away from his job to focus on his health, they’re very much part of the church community.
heidi also thought the solution to brad’s decline was a lung transplant. he was younger and stronger than many people they knew. but the transplant team who met with them for consideration said the lung transplant is “trading one set of issues for another. and i remember when i met them and they were going over the list of medications, as a nurse, all i kept thinking, was i know these drugs, but if you want the transplant, this is what has to happen.”
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she had left her job for early retirement after his diagnosis, but returned in a few weeks, recognizing that she needed to keep working for her own fulfillment and helping others.
“i knew that i wasn’t ready to leave, and i still had a lot to give to help people. the interesting part to all of this is the lessons i’ve learned even more so. i mean, after 42 years of nursing, i’m still growing.”
meanwhile, brad had the lung transplant in may 2024, grateful for the match from the donor and ready for a hopeful future. while the new lungs have been compatible, the side effects of the drugs and the complicating challenges have not been easy. these have included a sternotomy procedure because his sternum did not fuse after the transplant, diverticulitis, a bout of covid and then a relentless c. difficile infection, which causes chronic diarrhea. he still has diarrhea, which makes it difficult to leave the house.
as well, heidi knows a couple in her neighbourhood where the husband died within four months of a lung transplant. doctors have said brad is “middle of the road” in terms of survival and doing okay.
lung transplant trades one disease for another
hope is tempered by caution and the reality of daily life. “i think it is a whole new world, but it’s not always a whole new positive world. it’s different. it’s like you’ve got new lungs and you can breathe. he’s alive. he’s breathing. i’m not sure how well he will do.”
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given the complications, brad also sees an infectious disease doctor and a gastroenterologist. he’s developed cataracts and needs a hip replacement, unrelated to the transplant, but more difficult because he is much weaker and has lost weight.
“he’s not the same man. i mean, he is and i love him to pieces, but it’s changed me. i’m just more lost myself because i feel i want to be patient with him. sometimes i really stop myself to think, ‘okay, i’m not the one who had my chest cut open for someone else’s lung.’”
when she’s being completely raw and honest, she admits that she is grieving. “i’m grieving all the losses. it’s the loss of his work. he was such a phenomenal pastor and preacher. and his physical strength,” she says.
“sometimes i feel i’m like a caregiver more than a partner.” she talks about the loss of physical intimacy because he doesn’t have the strength or energy.
heidi wants to be open about her experience so that others with the diagnosis can go into it all with eyes wide open and get lots of support, along with professional counselling if that feels right.
there’s emotional turmoil that is hard to turn off.
“i feel guilty that i get frustrated with him or frustrated with all the complications of here we go again or what next?”
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yet, she’s passionate about helping others, fueled by a deeper understanding of what it takes to care and heal. “being a caregiver, i look at caregivers even with an enlightenment that i never have. i think i was always good at it, but now i have far more empathy and the feeling that ‘oh, i know exactly what you’re going through.’”
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