There are more than 100,000 people waiting for kidney transplants in the United States. Over 3,000 new people are added to the kidney waiting list each month on average. We spoke with Kelli Collins, Senior Director of Patient Services for the National Kidney Foundation, to find out how transplant candidates can get a better understanding of their condition and the costs associated with transplantation.
Can waiting for a transplant take a toll?
Waiting for or receiving a transplant can be difficult emotionally. The transplant evaluation is extensive and requires multiple appointments and follow-ups. Some tests need to be redone each year to keep information up to date. The waiting list can be long: in the U.S., you could wait for a kidney for between three to seven years or longer depending on your age, blood type and other factors. Living donation can also be emotionally charged, especially if people expected to offer their kidney do not, or those who offer turn out not to be a good match.
What are some things you can do to prepare for a transplant?
Make sure that you take good care of yourself and follow the care plan you create with your health care practitioner while you wait for a transplant. Following a kidney-friendly diet, maintaining a healthy weight, taking your medications and attending medical appointments as required are vital parts of staying healthy while waiting for a transplant. It’s also important to plan ahead for potential financial burdens post-transplant.
What’s the best way to help someone who is listed for a kidney transplant?
Most people are not familiar with the effects of kidney disease and what dialysis or a transplant entails. Talk with your friends or family members about how they are feeling and ask them how you can help support them. Often just having someone acknowledge and listen to their feelings or concerns is helpful.
Kidney failure affects the entire family, so relationships may become strained as everyone tries to cope and support the patient. Talk to each other and seek professional support as needed. If you are facing kidney failure or preparing for a transplant, remember that you are not alone. There are many resources that can support you along the way. Understanding the process and being prepared will make you feel more confident in managing your condition.
What are some of the most common transplant-related questions you receive through the NKF Cares Helpline?
NKF Cares most often receives questions from patients and family members looking for guidance on how to get on the transplant list or for general information about what the transplant evaluation and surgery entails. Additionally, we receive calls from people seeking financial assistance resources either to help with the costs related to transplant surgery or for helping to cover medications after transplant. We also receive calls from people interested in living donation or patients interested in materials on living donation to share with their friends and family.
What is the most common transplant misconception you have heard?
The most common myth is that a transplant is a cure for kidney disease. This is not the case; a transplant is a treatment option. It is often viewed as an ideal option because a successful transplant allows patients to return to living close-to-normal lives. But after receiving a transplant, patients need to be vigilant about taking their prescribed medications daily to keep their body from rejecting the transplanted kidney. Patients must follow a healthy diet, exercise regularly and follow up with their care team to monitor kidney function and overall health.
What transplant-related expenses do candidates need to prepare for?
The expenses you incur depend on the type of insurance coverage you have. If you have Medicare due to kidney failure, this coverage will end three years after your transplant. Additionally, Medicare only covers 80 percent of the cost of immunosuppressant medications. These medications can be very expensive. Co-pays are usually a set fee for each prescription. Co-insurance is a percentage of the total cost of the medication; for example, you may be responsible for 20 percent ($2) of a $10 medication. But for a medication that costs $10,000 per month, you would be responsible for $2,000.
It can be difficult to completely anticipate all costs associated with transplant, so talk with your transplant team about what to expect so you can plan accordingly. We offer resources and tools to help you consider costs, plan for those expenses and learn more about common insurance terminology.
The NKF Cares Helpline offers support for all people affected by kidney disease, organ donation or transplantation. It’s designed especially for patients, family members and care partners. Trained specialists will discuss your concerns and send free information to help you learn more they are available Monday through Friday from 9 a.m. to 5 p.m. EST.