I’m on this quest for knowledge to get answers for both you and me. Join me as I learn more about MAC lung disease and ARIKAYCE, from a researcher, a doctor, and a patient living with this disease. Let's get moving.
Throughout my MAC treatment journey, I found that it's a rare but wonderful thing to have someone who really gets you, someone who can walk a mile in your shoes, and you in theirs. That someone for me is Elisse.
Hi, this is so great –
Oh my gosh –
Come in, come in.
So how was your trip?
It was great, thank you again.
Thank you for coming.
I wonder if you could share with me how it felt when you were diagnosed with MAC lung disease.
Oh absolutely. I was shocked. Honestly, it was like a deer in headlights. My primary care doctor took an X-ray of my lungs because she didn't like what she heard. When I saw the X-rays, I could see the damage she pointed out. I already had damage to both my lungs, and there was a great sense of urgency, to get started on treatment right away.
So you were on an initial multidrug treatment for MAC, did that work for you?
It did for a while, I did the treatment and once I was done, the initial multidrug treatment, I was OK for a while.
Could you tell me more about how you heard about ARIKAYCE?
I actually heard about ARIKAYCE from my pulmonologist. I was hopeful that this would help me test MAC-negative, and it did so I was thrilled.
When you were first diagnosed with MAC, what was your experience with your physicians?
Well, my first experience with my infectious disease doctor, uh was not great. I got no information from them, I would ask questions get one-word answers, it wasn’t working, so I called my pulmonologist to ask to find somebody else - which he did, and it was a completely different experience with someone else. I got my questions answered, we had a rapport, I think it's very important to find a doctor that you can work with.
Did anyone give you a bird's eye view of this situation?
I did not have an overview of the whole thing, of where I was going to be going and how long it was going to take to get there. They did tell me that the first time, when I was MAC-positive, my treatment was going to be 12 months. And the second time I was MAC-positive, my treatment was going to be for 18 months, and that was with the ARIKAYCE.
My experience isn't all that dissimilar. It would have been very helpful if someone had just helped me set the expectations. One of the big things that people try to manage is the side effects, how did that work for you?
I actually had hoarseness in my voice a few times and I actually lost my voice twice for a few days each time.
Mine were very similar. I also lost my voice, I kind of expected it. I had gone through the side effects with my doctor, I had a little bit of nasal drip, even like the blogs and the forms I was on, it was helpful in trying to manage all of that. I know that this can be a long journey, what would be your best advice to people with a diagnosis of MAC lung disease?
I would advise them to remember the doctor is there for you and your health, don't be afraid to ask questions.
Meeting up with other people, someone like Elisse, who also has NTM MAC lung disease, and has traveled the same path with me, helps a person not feel alone. You're not alone on this island. Not only with finding ARIKAYCE, but also finding other tools and other support such as good physicians, as a good team that you're working with.
We all know rare diseases can be lonely diseases, but they don't have to be. Here's what I wish someone would have told me: Remember to advocate and ask all your questions, it's a long journey but there’s support to help you persevere.
Yours truly, Judy.