Blake was just 16 days old when he received the gift of life. Today, at 14, Blake is a normal, active teenager ... who loves sports, loves his team, and whose favorite subject in school is algebra.
A surgeon moves a donated organ to someone whose organ failed. This is an organ transplant. Certain diseases can lead to organ failure. So can injury or birth defects.
- Get a Referral
Your doctor must refer you. A transplant center or program then checks if a transplant makes sense for you.
- Gather Information
Learn about transplant lists, costs, and recovery. The United Network for Organ Sharing (UNOS) created, What Every Parent Needs to Know (PDF - 5 MB). It gives you an overview of the process.
- Select a Transplant Center
Make sure the transplant center meets your needs.
Consider its location, if your insurance will pay, how you pay, and if they have support groups. The Organ Procurement and Transplantation Network (OPTN) has a list of member transplant centers.
- Make an Appointment
Contact the transplant hospital. Set an appointment for them to evaluate you. They will decide if you qualify for a transplant.
During the evaluation, ask questions. Learn about that hospital and its transplant team.
- Get Listed
If you qualify, the transplant team will add you to the OPTN waiting list. The transplant team will contact you in writing about 10 days after they list you.
Direct any questions about your waiting list status to your transplant team.
Transplants cost money before, during, and after the surgery. You pay these costs, not the donor.
Your health insurance may cover some costs. Call your insurance company or your employer's benefits office. Ask what costs your insurance will pay and how.
What do costs include?
- Lab tests, organ removal, transplant surgeons, and other operating room staff
- In-hospital stays, getting to and from the transplant hospital for surgery and checkups
- Recovery, including physical or occupational therapy
- Medicine (e.g., anti-rejection drugs)
Review questions you should ask your insurance provider and financial coordinator.
You must pay for any costs that insurance doesn’t cover. Think about how you’ll pay these costs. This may include savings, sale of property, etc.
Who can help me with the plan?
Members of the transplant team, such as the social worker and financial coordinator, can help you develop a plan. They may put you in touch with groups that help pay transplant costs.
How else can the financial coordinator help?
Speak with the financial coordinator before you make financial decisions about your transplant.
They can help you:
- understand how your insurance company's benefits apply to transplant surgery;
- make a plan to pay for your transplant;
- make a plan for nonmedical costs, such as living expenses;
- locate sources of funding; and
- understand bills from hospitals, doctors, pharmacies, and other providers.
Medicare is a federal program. States operate Medicaid. Both are health insurance programs that may help with your transplant costs.
What is Medicare?
Medicare is for people age 65 or older, people with disabilities, or people who have end-stage renal disease (ESRD).
What will Medicare cover for my transplant?
- Medicare Part A is free to those who qualify. It covers inpatient hospital care and some nursing home care.
- Medicare Part B participants pay premiums. Part B covers:
- outpatient care;
- doctor bills;
- some home health care; and
- prescription medicines including, in some cases, anti-rejection drugs.
Medicare certifies transplant programs throughout the country. You must use a Medicare-approved transplant facility to receive full Medicare benefits.
Find out more about Medicare and organ transplants.
What is Medicaid?
Medicaid is an insurance program for people with low incomes. The federal government and states fund it. States decide who can get it and what benefits and services they’ll cover.
What does Medicaid cover for organ transplants?
Some states' Medicaid plans cover only transplants done in the state. That is, unless there’s no transplant center for that organ in the state.
Some states' Medicaid programs don’t cover transplants. Check what your state Medicaid program covers.
How can Social Security help?
Contact your local Social Security office online or call them at 800-772-1213. They can answer questions you have about Medicare or Medicaid. You may qualify for benefits after an organ transplant.
The OPTN has rules for how donor organs match to patients on the waiting list.
This might include how sick a patient is. Their blood type may also be a factor. It depends on the organ.
Doctors will watch your health years after your transplant. Lab tests will be a regular part of your life.
Talk to your transplant team. Ask:
- what monitoring you’ll need;
- what you can have done at home; and
- what will require visits to the transplant center or other locations.
How will my body react?
Your body may reject a transplanted organ or tissue. It sees it as an invader and tries to destroy it.
Anti-rejection medicine can help. A weak immune system can be slower in defending against germs.
You may get infections more easily. You may find it harder to recover from infections and illnesses.
Protect your health. Follow good prevention practices to avoid illness and injury. Get treatment early when you do get sick.
You’ll probably need to take several kinds of medicine. You may take some medicines several times a day and others only on certain days. Your medicines or dosages may change.
Get to know your pharmacist. They can help you:
- understand your medicines;
- manage your medication schedule;
- explain the effects and side effects of medicines; and
- recommend tools like timers and organizers. These help you keep track of medications.
Eat
- High-fiber foods, such as raw vegetables and fruits;
- Calcium-rich foods, like low-fat dairy products and green, leafy vegetables. You could also take calcium supplements.
- Foods high in protein, such as meat, poultry, fish, eggs, unsalted nuts, and beans. Protein helps you build muscles and tissue. This helps you heal.
Drink
- Plenty of water, unless your doctor tells you to limit fluids.
Avoid
- A lot of salt, processed foods, and snacks. Use herbs and spices to add flavor.
- Eating too much.
Limit exercise and muscle strain when you first return home. Talk with your doctor. They’ll tell you what to expect. And they’ll tell you what activity to limit.
Most people feel weak after surgery. You’ll have to recover from the operation. You’ll also have to recover from the illness or injury that made you need a transplant.
When you feel better, exercise will help you regain your strength. You may feel tired at first. Take rest breaks during exercise. Gradually, increase the amount and type of physical activity you enjoy.
You may want to thank your donor’s family. Sometimes donor families want to check on you. Federal law requires transplant centers and Organ Procurement Organizations (OPOs) to protect donors and receiving patients’ privacy. They can arrange for contact between the families when both sides agree. The process may begin with a letter from you to the donor family. Read the guidelines for the first letter in, Contacting My Donor Family.
You have the potential to help save lives as a donor. You can start by signing up through your state’s registry.
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