Resources for Lung Transplant Spouses

I have the honor of mentoring spouses of people who have Cystic Fibrosis. Because my husband had his lung transplant in 2014, I tend to focus on that aspect of things. I love research, and I tend to over plan. I have created this collection of resources to hopefully help people. Please know that things and organizations change over the years. I will certainly do my best to keep this list updated, but of course do your own research, and use your own best judgement.

You can find out more about our transplant story here and here.

End of Life Planning

Yes, this is dark and not fun to talk about. But regardless, everyone should have these difficult conversations with their loved ones. I started with this site: https://getyourshittogether.org/. You can find the book on amazon here: https://amzn.to/2LigVLU

Finances & Fundraising

I would suggest having at least one national joint banking account. For us, having to travel last minute, and needing to quickly pool funds would have been way easier at the time of the transplant had we already had this setup.

We also now auto-pay all our bills. If this is financially possible for you, I highly recommend it. When you’re in the middle of an unexpected hospital stay, bills tend to be the last thing you remember.

I can not recommend enough: the Children’s Organ Transplant Association. This amazing organization helped and continues to help us pay for medical expenses via fundraising. Being able to donate and have a tax write off is ridiculously helpful.

Thinking about applying for disability? Have health insurance drama? Definitely talk to Compass! “The Cystic Fibrosis Foundation’s patient assistance service, Compass, is a personalized service to help with the insurance, financial, legal, and other issues faced by anyone with cystic fibrosis, their family, and their care teams.”

Constantly surprised by the next medical cost? Eirik and I have smoothed out a lot of our financial planning and budgeting by using YNAB.

Also Boomer Esiason does Transplant Grants!

Community

When we were waiting for the transplant we were helped by so many people in our community. I highly suggest having conversations with people before you’re in crisis if at all possible, about how they can help. It’s a lot easier to ask a favor in advance, then it is to problem solve while actively in an emergency. For example, we knew we might need our car driven to California, and we had a conversation with a friend months in advance who said he could do it. It was a great relief to have plans like that already in place.

You are not alone. I’ve made friends in the Facebook Group Project CF Spouse Group. You can find out more about this organization here.

Connect via CF Peer Connect. It is such a rewarding experience, and it helps validate feelings all around.

Having trouble with your family or community and how they are handling health issues or emergencies? This is a great article for everyone to read and a great resource to pass along to others who may not get it.

Technology

Get a password system. Know your spouses passwords – get a password manager, an encrypted spreadsheet, anything. It can save a heck of a lot of stress and anxiety in an emergency.

Company Benefits

If you work for a company that has benefits use the heck out of them. Some companies offer legal help (great for wills!), health advocates, or charity matching. Do your research!

Therapy

Go get it. If you can, establish a relationship with a therapist before you or your spouse is in crisis. It will make things easier. I tried a couple before I found the right fit. Ultimately, I found the right person through a mix of health insurance recs and this website.