Once you learn you are a candidate for an organ transplant, you may think you can sit back, relax a little, and wait for that phone call telling you it's time for surgery.
Nothing could be further from the truth, say transplant experts.
The time before the transplant is the best time to devote yourself to preparing mentally, physically, and financially. This article can get you started.
Getting Into the Organ Transplant Mindset
An organ transplant's psychological impact must be addressed. While your transplant team can tell you what to expect, they probably haven't experienced it firsthand. It helps your health care team to know what you're going through, says Penelope Loughhead, LMSW, a transplant social worker at Memorial Hermann Hospital in Houston.
Along with sharing your thoughts and needs with your team, Loughhead aIso thinks it's beneficial to talk to someone who has gotten an organ like the one you are waiting for. When you're ready to connect with someone this way, ask your transplant team's social worker to help you.
While the waiting time for your organ transplant might seem difficult, you can use this time to come to grips with what's going on, says Gigi Spicer, RN, former vice president of transplant for Tulane Health System. Typically, she said, it takes candidates a few months to get used to the idea of the organ transplant and how it will change their life.
Though everyone waiting for a transplant needs time to cope with the fact that their health isn't what it was, Spicer advises candidates to adopt an optimistic attitude. Something like: "I am not the disease. I am still who I was. I just happen to have this problem, but my problem can be worked with and my life can be richer."
Looking at Your Lifestyle Before an Organ Transplant
Often, organ transplant candidates need to make some substantial lifestyle changes, such as losing a moderate or large amount of weight or stopping smoking, says Spicer.
That can be hard for some, Spicer said. Candidates are often willing participants in the high-tech aspects of an organ transplant but may drag their feet on lifestyle changes or deny that changes are even necessary.
That's when you need to cultivate a little perspective, recommends Spicer, and decide on just what the transplant is worth to you.
Handling the Financing of an Organ Transplant
Whatever the organ, transplants are expensive. For instance, the billed costs for a heart transplant in 2020 (including organ procurement, immunosuppressant drugs, and hospital admissions) was nearly $1.7 million, according to Milliman, a health care management consulting company. In the same year, billed costs for a kidney transplant were $442,000, while a double lung transplant cost $1.3 million.
Insurance coverage for an organ transplant varies widely. But one thing's nearly certain, says Marwan Abouljoud, MD, director of the Transplant Institute at Henry Ford Hospital System in Detroit: Most patients will have some issue about insurance.
Abouljoud counsels patients to work closely with their center's transplant team, particularly the social worker and financial coordinator, to figure out the funding sources.
Typically, the transplant center officials tell you what is covered by your insurance. You should also check directly with your insurer to confirm your plan's benefits and any steps you'll need to take to ensure you are covered. Once you find out what part of the bill insurance covers, talk with your transplant team about other possible sources of coverage to help pay for your care. Medicare, for instance, could be available to those who are disabled or who have end-stage kidney disease.
You can also check with your state's insurance commissioner to see if any plans might help out. For instance, certain people, even with pre-existing health conditions, can qualify for high-risk pools. Be aware that the premiums are higher than other plans and the coverage typically more limited. You can ask about guarantee issue plans, available in some states. These require insurers to offer coverage to individuals even with pre-existing conditions.
In addition to the direct medical costs, an organ transplant is associated with other expenses, such as lodging if you are traveling away from home to a transplant center, your lost wages if you have been working, airplane costs if you are traveling to a center, and extra child care fees if you have young children.
To cover these nonmedical costs, as well as some of the uncovered medical expenses, you can check out various charitable and advocacy groups, such as the National Transplant Assistance Fund or the American Kidney Fund. A lengthy list of organizations is posted at the consumer website maintained by UNOS, called "Transplant Living."
If you decide to take the fundraising into your own hands, sponsoring a car wash or asking for donations from your church or temple members, for instance, get advice first about legalities from your transplant team and your accountant. Different city and county regulations come into play, and the money you raise may be counted as taxable income, perhaps affecting your eligibility for assistance programs.
Questions to Ask Your Doctor About Organ Transplants
Even if you've tended to your mental, physical, and financial preparation, it's common to have a lengthy list of questions about your organ transplant.
One of the most common is how much advance notice you'll get that an organ has been found.
The answer varies by organ, says Abouljoud, who performs liver transplants. For liver organs, he says, you may typically get a call from the hospital two or three hours before they expect you there. For kidney transplants it may be between 24 to 30 hours' notice. But in general, how soon the transplant team expects you depends on a number of factors, including your health condition.
Other questions that are often asked include:
- Can you describe the risk of organ transplant as well as the benefits?
- Can you explain how organ transplant waiting lists work?
- Are there different qualities of organs I can sign up to receive? For example, do you transplant organs from a donor who might have a disease, such as hepatitis C?
- Can you tell me the success rates for my particular organ transplant and age group?
- How many transplants does the transplant center I am going to do each year? (New federal guidelines require centers, with rare exceptions, to do an average of 10 a year to maintain federal funding.)
- How long is the waiting list for the organ I need at the transplant center I picked?
- What is the one-year survival rate at your center for this type of transplant? How does it compare with the national average? (National averages are posted at the web site maintained by the Scientific Registry of Transplant Recipients, called "U.S. Transplant.")
- How many surgeons are available to do my type of organ transplant?
- How long do I stay in the hospital after the transplant?
- May I travel, or do I need to stay within a specific distance of the center at all times?
- What follow-up tests and follow-up visits will be needed and for how long?
- What are the odds I will need to return to the hospital?
- May I have a tour of the center?