Jen Dunlea, who lives with cystic fibrosis and has undergone two lung transplants, shares her tried-and-true advice for managing finances, insurance, work options, and community support while prioritizing health.
Transcript
Hi there. My name is Jen Dunlea, or known online as @JenCantBreathe. I was diagnosed with cystic fibrosis at 2 and a half, and at 13, I had my first double lung transplant, and at 23, I had my second. I guess you could say I’ve learned a lot about financial management with CF.
I’m here today to share what I’ve learned with you. My tips and tricks for financial management with CF:
Meet your insurance deductible as early as you can in the year.
Front load all of your meds before you see your doctors. The meds will eat that up in a second.
Second is SSI or SSDI. The difference with that is SSI is if you don’t have work history, but if you do have a significant work history, definitely look into SSDI.
Third, is secondary insurance; they cover what your primary insurance does not. The secondary insurance is Medicaid, which I highly recommend everyone look into and try to secure.
Fourth is looking into if your state has a paid family caregiving plan. Look into it because they can be paid for the work that they do to help take care of you anyway.
Fifth, an at-home job. You can work from at home with a call center job. You can look into local companies that need help with advertising if you’re into that. There are so many jobs now online that are pretty much doable.
Sixth is embrace community help. That’s your family, your neighbors, the CF community. Everyone will want to help. People love to help you. And it’s the — when you have a greater community, you are both helping yourself in a hard financial time, and you’re also spreading awareness about the struggles with CF. So to me, that’s a win-win.
Seventh is to set up a COTA, The Children’s Organ Transplant Association. It’s basically a go fund me, but for people with chronic illnesses and those who need or have had transplants. If you have a genetic disease like CF, you are automatically accepted. But if you are going to have, or have had a transplant, that’s another way in.
The eighth would be setting up an ABLE account. If you have a college account, you can convert it into an ABLE account tax-free without losing the money. This is incredibly helpful if you don’t go to college like I did.
And lastly is CF [Foundation] Compass, they help navigate insurance, finances, legal issues, and care coordination. That is a great CF resource right there.
I have learned that if you don’t have your health, you do not have anything. Taking care of ourselves is our No. 1 job. Yet we also need jobs and money to be able to work that No. 1 job, which is taking care of ourselves. I know how incredibly unfair that is.
I am here in this terrible situation with you, but I want to remind you to rely on your community, your friends, family, nonprofits, and grants. Again, people want to help us. And now you know how to find these resources.
I hope you’re able to take away something positive from this video. And this has been my tried and true advice.
