Covering the costs associated with lung transplantation is an issue that will be with you throughout the journey. We were fortunate in two key ways.  Our insurance company had a separate division for all things transplant AND our extended family, friends and community held an amazing event to help us with the financial burden associated with transplant.

The first step in grappling with this challenge is to understand your insurance coverage. Coverage and limits vary widely across plans, so you need to find out the details of the plan(s) available to you. In particular, you need to know which transplant programs participate with your insurer.

When we made our initial call to our insurance company, they assigned us a case manager and she was our contact person going forward. She assisted us all the way to transplant with issues such as statistics at the different centers, accessibility, lodging and communication between social workers and medical teams.

It’s unlikely that all your medical expenses will be covered by insurance, regardless of the plan you have. And then there are the non-medical costs: travel, lodging, meals away from home – remember, you’re looking at a 3-month stay near the center following surgery. Our insurance had a travel and lodging benefit to help offset some of the peripheral expenses, but the total expenses were well above the policy limits.

FundraiserThe fund raising event organized by our family and friends was a roaring success. The event included silent and live auctions, horse and carriage rides, activities for families and a chicken barbecue.  We have heard of many, many ideas that others have used to raise additional funds for transplant that range from selling organ donation bracelets to hosting a tethered hot air balloon and Jamborees.

Your social worker can help you research grants and other financial assistance for the excess medical costs. As in our case, hopefully your support network can help organize fundraisers to build up a reserve to meet these costs.

There are a couple of resources available to individuals in the Rochester/Finger Lakes CF community:

  • Just Breathe Foundation provides medical financial assistance to CF patients and their families in the Rochester area. You can get an application on their web site:
  • CFFC can provide limited assistance. While CFFC does not organize fund raisers for individuals, the organization can: (a) publicize fund raisers on the CFFC web site, and (b) act as a fiscal agent so that donations through events are tax deductible.