Advocacy Stories: Highlights from an Interview with Amy

During our Self-Advocacy Special Education Week, multiple members of the PF NOW! community volunteered to share their advocacy stories. Our first two advocacy stories are available here and here. 

This month, our advocacy series continues with an interview featuring our community member Amy. Read on to see highlights from her interview, or click here to read the whole transcript. 

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PF NOW!: When did you get diagnosed with PF or IPF, and what caused it (if you know)? 

Amy: I was diagnosed with an autoimmune disease called scleroderma in 2004, and right away I had PF in my lower lobes… My lungs stayed stable for a couple of years, and then they started to take a dive… that’s when I had to look into alternative ways to treat that.

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PF NOW!: What are the symptoms that you struggled with at the time of diagnosis, or that you’re handling right now?

Amy: A lot of coughing… The coughing spells would last for half an hour to an hour. It’s just exhausting…  Laughing and crying will cause me to cough… Any kind of fake smells… The wind, breathing cold air, anything that gets my heart rate up will make me start coughing. I can’t eat or drink anything very cold (I can’t have ice cream, malts, or smoothies), because that will instantly make me start coughing.

And then shortness of breath… I used to be a really fast walker, and now I notice that I’m no longer the person that people are trying to keep up with. It’s the other way around: “Slow down, slow down!” 

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PF NOW!: With the PF and the scleroderma symptoms, have you been able to find the support that you need? 

Amy: Yes. I am fortunate that I have a husband, and (most of) my friends and family are incredibly supportive and accepting of my limitations. 

I did help start a local scleroderma support group shortly after I was diagnosed, but nobody really wanted to look at ways to improve life. Everyone just wanted to come and complain. Which I get – you need space to do that. But we were trying to bring meditation, self care and positive thinking into the group, and nobody wanted that. Unfortunately, it became something that was dragging me down and I really couldn’t be a part of it anymore. 

It’s really helpful to have groups like PF NOW! because people can vent and feel heard, and there’s such a wealth of information being shared. There’s also a great sense of community and understanding. 

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PF NOW!: Can you think of a time when you had to stand up for yourself or speak up about your needs? What was that like for you?

Amy: Yeah, absolutely. It has more to do with scleroderma than PF. After my lungs started declining around 2006, my local rheumatologist (who was like the person to go to if you had scleroderma in the city I live in) was answering my question, “What can I do? What are all the treatments that are being offered right now?” She said, “Well, I’m leading a stem cell transplant trial right here. You’d be the first patient. It’s really your only option.”

So I started going through the pre-screening and tests to see if I would qualify and I did. 

Click here to read the full story with Amy’s advocacy moments, including:

I made an appointment with [my rheumatologist], sat down with her, and said, “I’m not okay with you doing this… This is my life, and I’m going to do what I think is best for my life.” And I said, “I’m no longer going to be your patient.” I’d just lost all confidence and trust in her…

As a patient, it was very difficult and awkward – even being a nurse – it was very difficult for me to step up to that 2nd doctor, and let her know how I felt about what she did. In hindsight, I wish I would have reported her… because I feel like she probably did other patients a disservice in her care…

I feel like the biggest thing is: you gotta rely on your intuition. I think if people don’t have a good relationship with their intuition, they need to develop that. There are apps and books and online classes that help you connect with your intuition. I definitely use that a lot in my disease process – sensing what’s right or wrong for me. 

I feel like I’m going to have to start advocating for myself with the OFEV a little bit, because I’m not happy on the OFEV at all. It’s just miserable. Nonstop diarrhea, nausea and lack of appetite. I’m not a fan of Imodium, and I take the smallest amount but it goes the other way…. I don’t really feel like I’ll be staying on the OFEV for very long. It’s a scary thing to consider, because my lungs have taken a big hit in the last year. It’s a difficult place to be. On one hand, I’m like, “Well if the OFEV’s gonna keep me alive, I guess I can tolerate the side effects… But it’s such a crappy existence – no pun intended! So I think I’ll have another big advocacy experience about that.”

I did talk to that pulmonologist last time and said, “The quality of life is very important to me, and the OFEV has definitely hit my quality of life.” And she said that’s absolutely something I have to take into consideration. But I just know with things like that, you have to stand your ground with your doctors if you don’t have one that’s understanding or open to collaborating with you. 

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PF NOW!: Since you’re already in touch with your intuition, do you have any advice for yourself while you’re trying to advocate or speak up about this?

Amy:  As much as I try not to be, I do still get intimidated by doctors. I think that’s just something I have to overcome. 

Remember, the doctors are working for you and ultimately you’re the one making the decisions. I think you have to be firm, be brave, and be clear about your goal where your disease is concerned. Ultimately, it is 100% up to you to decide what direction your treatment goes.

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The interview concluded with a conversation about PF NOW!’s List of Patient-Recommended Specialists and the challenges of finding the right care during COVID-19. We discussed what it’s like to have family or friends not understand the realities of PF, and assured Amy that we are here to support. If you want help educating the people in your life, please contact us. 

Please comment below to thank Amy for sharing her story and wisdom!