Facing Finances

Uncommon Lungs: Beyond the Episode

Talking about finances shouldn’t have to feel taboo. Caregiver Magen recounts the sacrifices she had to make when her twins were diagnosed with cystic fibrosis (CF). She also shares some of the ways she has reached out for support and started planning for her family’s future. Plus, social worker Amanda gives tips on where to find financial support.

Remember, everyone’s experience with CF is different. Make sure to talk to your care team about your specific financial needs and work with them to identify opportunities for assistance.

How did your twins receiving a CF diagnosis impact your life and your finances?

Magen: The boys were diagnosed at 15 days old, and when we were in the care center, they kind of talked to us about who’s going to be caring for the boys. And obviously you want it to be you. You want to walk this journey with them. So I stopped working as a teacher and that really put pressure on my husband. You know, he was our sole income then.

I think in the beginning, especially those first two years, my husband and I didn't realize how much we were grieving. And part of that was just like we wanted to kind of like tuck it all away to ourselves because it was hard. And I think we've learned that reaching out, especially to family, but also just like other people in the CF community, is what has helped us so much. There are so many people to learn from and it's just a great way to, with such an isolating disease, to talk to somebody that understands. It can just change your perspective in an instant.

But there was a point when we came out of the grief that I realized I needed to mentally take better care of myself. And so I had started going to counseling and it has been just life-changing to be able to speak to somebody about all those, you know, thoughts and all the fears that I have. But in turn, like even that, with finances, there are times when I don't go to a session because we are paying for all the medications and things that the boys need. So that's a sacrifice, but it's worth it.

A really great thing for me is I joined a community and I work out with a ton of really great women here in Birmingham, and that's kind of helped the gap of not having counseling when I'm not able to do it. But I think again, part of that is just being vulnerable about what we're going through and my fears. And most of the time I leave those sessions and I'm like, okay, we're doing okay.

Where were you able to find financial support?

Magen: So we have been very lucky to be guided to some resources. Our care center was able to teach us about a grant that I apply for every year. And that has been so helpful because there's like a vitamins and supplement part and a treatment part. And we go through that grant every year, probably by August, it's done. But having that as a resource has really helped alleviate those little co-pays that kind of add up.

And I mean, we have the boys on a special protein shake and just that expense is a lot and having the grant really takes the pressure off. And it's not something that, you know, they have to have, but it is something that has helped them continue to stay healthy. And so we feel like it's been a great choice.

And there were times (and there still are times) that we’ve had to ask our family and tell our family that this is what we need, and so they’ve been so great about that. Every little thing that they do—it just adds up. So things like that have been really helpful too.

“There are going to be so many people that are around you during this journey and during this diagnosis, but they haven't been there. They don't know how to help. And so sometimes that just means we have to tell them.”

–Magen, a caregiver of twins with CF

Are there ways that you’ve been able to start planning and saving for the long term?

Magen: I think that's like always in the back of our mind is—I think we're at a great point to be able to, honestly like, I kind of take it as like a good thing to be worrying about them in their future. And I see them in college, I see them thriving, and so that just means like there is hope there and so we want them to be prepared when they get older. They're going to be the ones that are refilling these prescriptions, that are doing these kinds of things. And I never want them to feel like it is a burden. I never want them to stress about that.

I think maybe that's been a really hard thing for me is like, I used to like sob when I would fill their prescriptions because they would literally like tell us to pull up in the drive-through because they had two bags full of medicine and I mean…just realizing that like, that's our reality. And for me, that caused a lot of anxiety because I never—I don't know, I just feel like they're going to have this moment of like, this is my reality and I want them to not look at it and be overwhelmed.

I want them to look at it and realize what an incredible journey it's been. From the care teams and the people we've met and the researchers—I mean, we just met a researcher here in Birmingham who's dedicating their life to this! I just want them to see the big picture and I don't want them to be overwhelmed. And I think that us planning and making sacrifices now—like we're not going on big summer trips, we're not doing big, crazy adventures right now. And that's just because we want to save for them because they are thriving and they will continue to thrive. And so we never want finances, we never want their CF, we don't want anything to get in their way. They have got an incredible purpose and we are ready to see it.

Any words of wisdom for other caregivers searching for support?

Magen: I think that the big thing is just be open with your journey, be open about where you are at. I'm saying that as I'm talking about finances, your emotions, what you need. There are going to be so many people that are around you during this journey and during this diagnosis, but they haven't been there. They don't know how to help. And so sometimes that just means we have to tell them. Even if it's “Hey, this week is crazy. I need you to bring me dinner.” Like, I don't know how many times like, just dinner has been a blessing. But being vulnerable and sharing your story.

I just can't even tell you how many times I have felt this nudge in me to just, you know, share about the boys to people that we've just met. Actually, we were at the beach last week, and the boys were playing with these little kids that seemed to be their age and their grandparents were sitting next to us, so we started talking. And they had mentioned, “Oh wow, like they look so similar like in height and body weight,” (talking about each of the boys), and we were like, “Yeah, actually, you know, they're living with cystic fibrosis,” and she paused and said, “Cystic fibrosis? My sister is 70 and she has CF.”

So then you can imagine the conversations we had after that! But my point is, I mean, we wouldn't have made that connection. So lean into your care team. Tell them what you need. They're going to guide you to resources. And lean into social media. I know that's crazy, but I'm able to connect with so many other caregivers and people living with CF and just to connect with them has really helped us to keep going. You feel so alone sometimes and you're not. And so don't be afraid to just send a random DM to somebody that might be sharing their story. I think that's just been, like I said, a really great thing. So “lean into your tribe” is what I always say. You've got a big one and it may not feel like it in the beginning, but people really do care about the CF community and it's been really cool to see.

Expert perspective with Amanda, a social worker

What do you recommend caregivers do to find financial support?

Amanda: Well, I know talking about finances can feel very embarrassing. And I've had a lot of families kind of share that they almost feel guilty bringing up this conversation because they're worried that it might be conceived as a judgment from their CF center like, “Hey, I have to think about paying for this medication. I'm not sure how I can do that.” So, just being able to normalize it. It's okay to talk about this because we know it's just part of what your family is going through.

One of the biggest things to take into consideration is that your state might have more resources than you know, and if you don't ask, we may not necessarily tell you. Each state has different state resources that might be available to them. Some states are very lucky to have particular programs that are more chronic-disease-based (or specialty in those regards) available, while other states might just be more income-based. So your care center would know more specifically what resources are available in your area. There are a lot of wonderful grants that are out there that can help cover some of the medical expenses for families, from prescription copay costs to vitamins and other nutritional supplements that are just so vital to helping our young people and adults stay healthy as they live their lives with CF.