Interview with a Pulmonary Fibrosis Caregiver

We interviewed Peggy Roby, who is a caregiver for her husband, who has been diagnosed with idiopathic pulmonary fibrosis.

PF NOW: When did your experience with pulmonary fibrosis and as a caregiver begin?

Peggy: Ever since he was in his 30-40’s, he’s been clearing his throat, and from what I had read, some other pulmonary fibrosis patients have talked about having that feeling as well. When this started happening years ago, I didn’t think much about it, just figured that it was a nervous habit. He’s had a cough for years, and we finally decided to seek out medical attention 4-5 years ago once the cough started getting worse

PF NOW: How was he diagnosed?

Peggy: The first doctor went ahead and did a breathing test and did a CAT scan, and saw that there were beginning stages of pulmonary fibrosis, and he was told to take Singulair and return on a yearly basis. He had never, ever smoked, and every time the doctor would see him, he would say, “You’ve smoked,” and he would say that he hadn’t.  After about four years of that, I asked our daughter, who is a nurse at the hospital, for a referral to a new pulmonologist, and she recommended a physician because she said he was so compassionate with his patients and I just wanted a second opinion so that my husband could have a better quality of life. When we went to him, he said that he was going to start from scratch, and he did all kinds of blood work and ended up diagnosing it as idiopathic. He also did the CAT scan and said that my husband’s condition had advanced, although not rapidly, in comparison to the last scan from four years prior. He suggested steroids to help reduce symptoms but that would not help the problem so I began to investigate and started researching different websites and I came across your research study on systemic enzymes. It was because of Dr Mehta who said that he was not sure if taking these enzymes would help but they would certainly not hurt him, that my husband was at peace with what I had found. I was telling my kids all about this website and these enzymes. The pulmonologist was so interested to see the effects that he wants to do a follow-up CAT scan once my husband completes six months on the enzymes.

PF NOW: What is your daily routine like, and how do you support your husband?

Peggy: His regimen includes taking the enzymes, and I enjoyed helping him start off his scheduling table in order to get him into routine with his enzymes and food. On your website, you have breathing exercises, and Dr. Mehta said he would sign him up for pulmonary rehab, which I wasn’t really excited about once he started. They weren’t really doing as much as I thought your exercise regimen would do, so I tried to implement your exercise regimens more. Even after this long, it is something that we struggle with because he is active as it is, so to this day we are working on getting him to do his specific breathing exercise. As a caregiver, that is sometimes the struggle that I have in order for him to not feel like I’m telling him what to do.

PF NOW: How has your life changed before and after the diagnosis?

Peggy: Well, the worst was probably when we started to notice a real issue when we went to Yellowstone about a year ago and there was some walking and he would be short-winded and gasp for breath. Whenever we would talk on the phone around that same time period, I would hear him breathing heavy over the phone. Everyone expects that, as we age, we aren’t able to do all of the things that you used to do, but his condition has definitely affected activities that we would be able to otherwise do. He coughs a lot around the house and it is very loud, and he can’t help it. We actually now sleep in different areas.

PF NOW: Were there any unexpected challenges associated with being a caregiver for your husband?

Peggy: Except for having to do some activities, such as walking or hiking, on my own, I don’t think there have been too many surprises. We are blessed that he is able to care for himself and does not need to be given extra oxygen. He is just kind of pacing himself, but as far as my role as a caregiver, I am blessed that there is not much he needs for me to do on a daily basis.

PF NOW: How has your experience been with pulmonary rehabilitation?

Peggy: The pulmonary rehab was a local one that our physician was affiliated with. My husband was put into a pulmonary rehab group with several other gentlemen who were on oxygen, and some of them had a breathing apparatus, and they would have them take classes on how to clean those. When he would get home and tell me about the things that he did, I felt like the activities he did weren’t what I had expected. Then, they gave him a harmonica and said that this was the kind of exercise that the lungs need, but they were not having him advance much and only did it every so often. Some of the other exercises, in my opinion, seemed like they were more cardiac rehab-based, since he had actually previously been through cardiac rehab years ago. I just felt like a lot of it was not geared towards his condition like those that are on your website. 

PF NOW: Did you try anything beside systemic enzymes?

Peggy: Our physician also offered the use of steroids, and neither of us were interested due to the potential negatives. We were also offered Esbriet  and I happened to watch an informational video on how it does not necessarily help the condition, and to me it did not sound like it was going to fix the problem. The doctor also confirmed that there were no guarantees, which is why my husband and I discussed enzymes with him. His advice was that he could not guarantee that it would help, but it also would not harm. Once we decided that this is what we wanted to do, Dr. Mehta wanted to do a follow-up CAT scan after three months. However, we actually got in touch this past week and decided to hold off to avoid going to the hospital due to COVID-19.

PF NOW: Do you have any advice for the community or those who are going through similar experiences?

Peggy: Don’t ever sit back and think that this is going to be it—do research, take action, and keep going. One of my best friends’ mother passed away from pulmonary fibrosis about 25 years ago, and her brother also passed away from the same condition in his 60’s after a difficult battle. After doing some reading, my husband turned to me and initially said, “ I can just tell that I don’t have much longer,” and this was before I read about the enzymes. I think that this was what encouraged me to get a second opinion. Another thing important to understand is that the patient cannot help their coughing and they don’t want to be coughing. You just have to learn to be patient with them.

Peggy has agreed to answer any questions and would love to have a conversation with our community members who may be facing similar or other challenges via email, so we can all help and support each other. Please reach out to us if interested in learning more and for her contact information.

To connect with the rest of the PF NOW! community: 

Join our online forum, and attend our virtual support groups on Zoom.