I’ve decided I want to try for a lung transplant. What should be my plan of action?
Study the transplant center list to find centers that might be right for your circumstances. Is there a transplant center in your area, or will you have to relocate? If you need to relocate, what center is in a location that offers you the most resources and support?
When you’ve picked a few centers that might be right for you, investigate what requirements they have of their patients. This information is typically available on their Website.
Consider your family/community support options. No one can go through a lung transplant alone.
Medicaid does not cover lung transplants in all states. If you receive Medicaid, you’ll need to investigate the rules in your state.
What other resources of support are available in the city where the transplant center is located? These may include:
- Paratransit services
- Services for the Blind
- Connections you may be able to make through your religious community
Consider your financial situation. What will you have to do to meet the financial requirements of a lung transplant?
If you are working, you will have to miss significant time from work as your lungs become sicker, and as you go through the transplant process. Create a plan to cover your needs during this time. You might consider Social Security Disability Income (SSDI) or accessing retirement savings. If you are legally blind, make sure to include this on your SSDI application. It will allow you to earn more if you are able to work part time before or after transplant.
Health Insurance – Does your health insurance place any restrictions of the transplant center you must use?
Do you have money in the bank or retirement funds? Depending on your financial situation, you may want to talk to an attorney to investigate the possibility of setting up a medical trust from which you can withdraw money for medical needs. This may allow you to access certain programs to help you cover medical expenses without having to use all of your savings first. There are pros and cons to this. An attorney who specializes in disability, eldercare or estate law may be able to help.
If you have Medicare, you will need a medical plan that will cover the 20 percent of costs not covered. This could be a Medigap policy, Medicaid coverage or a Medicare Advantage (part C) plan, depending of your income, needs and state regulations.
Keep all your medical records up to date. When you go to the doctor, or have tests, ask for copies so that you can supply medical records quickly when they are needed.
Talk to the pulmonologist and your primary care doctor for referrals. If you relocate, establish a relationship with a primary care physician and pulmonologist as soon as possible.