In the latest installment of our occasional conversations with Fort Worth leaders, Arlington resident Stephanie Golden shares her family’s journey with pulmonary fibrosis — and why she’s asking Capitol Hill for more research into a cure.

This conversation has been edited for length and clarity. For the unabridged version, please listen to the audio file attached to this article.

Alexis Allison: Stephanie, can you tell us a little bit about your mother?

Stephanie Golden: Her name is Olga Henderson, Olga Mae Frances Henderson. She was lucky enough to have two middle names. The most bubbling and bright-smiling person you could meet. Never met a stranger. She made a lot of people smile, including her family. Grandmother of two — she doted on both of them, not just with love and attention, but lots of gifts and things of that nature. Just a very supportive mom. 

I only got to have her here for eight years into her retirement before idiopathic pulmonary fibrosis snatched her away. And I’m not the only one who uses that expression. A very dear friend of hers in Kansas City, Missouri, described it the same way. It was like she just got snatched away from us. So I’m still very, very sad about the fact that we didn’t have more time with her here. She now has a great-granddaughter that she doesn’t get to meet. Her absence looms large for us, I think.

What is pulmonary fibrosis? 

Pulmonary fibrosis is a disease that scars the lungs. No cure exists, and in most cases, the cause is unclear. Hallmark symptoms include a cough, fatigue and shortness of breath, as well as unexplained weight loss. Diagnosis can involve a physical exam, where a physician listens to a person’s lungs with a stethoscope, and various tests like X-rays, CT scans or biopsies.

Allison: Can you tell us a little bit about her diagnosis journey with pulmonary fibrosis?

Golden: That didn’t come until six months before her passing, I would say. She had had several hospitalizations beginning in early 2018 and the complaints were shortness of breath, fatigue. Around May, she lost quite a bit of weight along with those other two symptoms. She didn’t get an official diagnosis of pulmonary fibrosis until the May hospitalization. (Our local pulmonologist) had made a referral to UT Southwestern in Dallas, and we finally got an appointment in September of 2018. And she was gone within a couple of weeks from there. 

But, I can think back to 2017. We had taken a trip together in January 2017. And we both contracted the flu while we were on this vacation. What lingered after she suffered from the flu in 2017 was this lingering cough. And it was chronic and persistent. Throughout 2017, when she’d walk, she’d cough. And then it became hacking. Over the course of that year, the shortness of breath was more pronounced. She’d have to sit down and rest before she could put her shoes on and tie them. 

Thanksgiving of 2017, it took two cousins visiting for the holiday. And my mother had a CT scan scheduled for the Wednesday before Thanksgiving, so she didn’t join us for breakfast that morning. And we were sitting at breakfast, and they just began asking a lot of questions: “Aunt Olga seems different. Why is she coughing so much? That doesn’t seem right, she doesn’t look well.”

That was a wake up call to me that I should have heeded — somebody that she’s not seeing every day recognizes that something’s off about her. Well, she passed out in the grocery store at the checkout counter in late 2017. They wanted her to go to the hospital. And my mother didn’t want to. That probably would have been helpful, because they would have done some additional testing and whatnot. She opted to just follow up with the primary care doctor, who then ordered all of these tests over the first half of 2018. She was told that she had some mild scarring in her lungs but not to worry about that. But that was alarming to me. I thought, “Well, that can’t be right. I don’t know what that is, but that can’t be right.”

Allison: I know that you have become an advocate for raising awareness of pulmonary fibrosis and increasing research for pulmonary fibrosis. And I’m wondering, in your own journey, what you know now that you wish you had known then?

Golden: Those three hallmark signatures of pulmonary fibrosis (chronic cough, fatigue and shortness of breath), I would say. Certainly take heed to that. And I don’t know, I wish we had done the ambulance early on. And asking to see a specialist right away in early 2018, when she was told that there was some mild scarring. That’s a trigger. That’s a warning sign. 

I know that there are people walking around with some lung scarring post COVID-19. That’s injury to the lung. I think any kind of injury to the lung certainly needs to be heeded. 

Allison: I know that you’re traveling virtually to Capitol Hill this week to plug for more research in this arena. Tell us a little bit about that.

Golden: Yes, this will be my first experience with doing so, and I hope it’s not the last. I look forward to sharing some of my experience with watching her struggle over the last six months (of her life). And you know, there were only two medications (Esbriet and OFEV) that I’m aware of that can halt scar tissue from continuing to develop. And boy, I wish we had more to choose from. I would like to see funding, certainly, for more research in, “How do we cure this?”

Allison: Thank you for sharing that story with us. Is there anything else that you’d like to share?

Golden: Hold them close. Be there for your loved ones who are sick and heed the warning signs. And don’t wait. Better to be over cautious or over attentive to it then than not. It really does make a difference. 

Alexis Allison is the health reporter at the Fort Worth Report. Her position is supported by a grant from Texas Health Resources. Contact her by email or via Twitter. At the Fort Worth Report, news decisions are made independently of our board members and financial supporters. Read more about our editorial independence policy here.

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Alexis Allison

Alexis Allison covers health for the Fort Worth Report. When she can, she'll slip in an illustration or two. Allison is a former high school English teacher and hopes her journalism is likewise educational....

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