When considering a lung transplant as a future treatment option, you and your social support team of family and friends will want to learn as much as possible about the different phases of the transplant journey and the types of decisions you'll be asked to make during each phase.
Should you move forward with a lung transplant, it is important to form a strong relationship with the transplant team and ensure you feel respected and heard by them. As you move through the evaluation process, you will learn about the different roles on the transplant team and how the team members work together. You will develop a working relationship with the transplant team as you await donor lungs and the relationship will evolve after transplant.
As you go through the pre-transplant process, you are preparing for scenarios that will arise after transplant -- for example, having multiple appointments in a short period of time for your transplant evaluation prepares you for the many appointments you may have soon after transplant. Communication is vitally important as you learn about the new medications, common symptoms, and challenges after transplant.
Transplant teams select people they believe will have successful transplants, which begins with your physical health. By introducing a lung transplant referral before you need to be listed, you and your care team will have time to develop -- and act on -- a plan to ensure you are in the best physical condition possible. This can include creating an exercise plan that can help you maintain lung function, achieving a healthy weight and maintaining it, and getting your blood sugar under control if you have diabetes.
Many emotions are associated with the prospect of going through a transplant, including anxiety, depression, and even simply coming to terms with having a progressive disease like CF. Your care team can help you find the support you need to work through these and other emotions you may be experiencing during this process. Getting help to cope with emotional challenges should not affect transplant candidacy, but not getting help could hinder your access to medical care, including transplant.
Transplants are expensive. According to the Centers for Medicare & Medicaid Services (CMS), the average cost of a double-lung transplant was more than $1 million in 2017.1 Although transplant costs are often covered at least partly by health insurance, transplant recipients have to pay for some transplant-related expenses themselves (called out-of-pocket expenses).
Some costs, such as the costs of moving to a residence that is closer to the transplant center and living expenses, won't be covered by insurance. People undergoing a transplant evaluation need to show that their health insurance will cover transplant and that they have a plan in place for covering the out-of-pocket expenses and post-transplant care. These expenses may include co-pays for lab tests, medications, and physical rehabilitation, and relocation expenses (if necessary).
If you are considering purchasing or changing health insurance, this health insurance comparison tool can help you determine which plan is the best one for you. If you may consider a lung transplant in the future, it is important to understand if any health insurance coverage you have covers transplant.
Donated lungs cannot last for more than a few hours without blood flow and oxygen. In addition, you will need to attend many appointments with your transplant team before and after surgery. Therefore, many transplant centers will require that you live within a certain driving distance or arrange to have yourself flown to the transplant center quickly.
- Your health insurance policy may offer transportation and housing benefits to help defray the costs of getting a transplant at a center that is far from your home.
- Check with the transplant centers you're considering to find out if they offer affordable housing nearby to support people who must relocate to live near the center.
If you are added to the United Network for Organ Sharing (UNOS) transplant waiting list, from the moment you are listed and for a period of time after your transplant, you will need to live near your transplant center. You will visit the center often for medical tests, appointments, and rehabilitation. It is important that you learn what services your transplant center offers to help you meet these needs for a successful recovery.
Social support is vitally important before and after transplant. Most centers have strict requirements about the people who serve as part of your social support team and who can help care for you as a transplant recipient.
Many transplant centers require that two people commit to actively supporting the person with CF, and some centers require that caregivers commit to learning as much about transplant as the potential recipient before transplant. Some centers require that caregivers cannot have other obligations that would prevent them from providing care and support to the transplant recipient, including children or parents to care for. In addition, many centers do not permit hiring a professional caregiver or home care aid. For example, one center requires that your caregiver must be able to drive, be a nonsmoker, and may not be responsible for anybody else's care, such as children or parents.
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