Risk Factors for Organ Failure
Chronic Disease and Connection to Organ Failure
Organ Transplantation: The Process
Organ transplantation is the process of surgically transferring a donated organ into a patient with end-stage organ failure.
End-stage organ failure is the most common diagnosis for those awaiting an organ transplant. Some diseases that can lead to end-stage organ failure are:
- Chronic obstructive pulmonary disease (COPD)
- Coronary heart disease
- Cystic fibrosis
- Idiopathic pulmonary fibrosis
- Polycystic kidney disease
- Short gut syndrome
2. Getting on the OPTN National Transplant Waiting List
- Get a Referral: You must get a referral from your physician in order to be evaluated by a transplant program as a potential transplant candidate.
- Gather Information: Order a free copy of Partnering with Your Transplant Team. This handbook is available from the Health Resources and Services Administration (HRSA) to provide wait-listed patients, recipients, and their families a sound overview of the transplant system and suggestions for how to navigate it. Copies are available in English and Spanish and are free of charge. Obtain your copy from the HRSA Information Center: 1.888.askHRSA or www.ask.HRSA.gov.
- Select a Transplant Program: Do as much research as possible to find a transplant hospital that meets your needs. Issues to consider include location, compatibility with your insurance program, financial arrangements and support group availability.
- Schedule an Evaluation Appointment: Contact the transplant hospital of your choice. Schedule an appointment for an evaluation to find out if you are a good candidate for transplant. During the evaluation, ask questions to learn as much as you can about that hospital and its transplant team.
- Get Listed: If the transplant team members determine that you are a suitable transplant candidate, they will add you to the OPTN national list of all people waiting for a transplant. The transplant team will contact you in writing about 10 days after you are listed to let you know the date and time that your name was added to the national list. Any questions you have about your status on the waiting list should be directed to your transplant team at your transplant center.
3. Plan Your Finances
- Understand the Costs Involved in Transplantation: Transplantation involves costs before, during, and after the actual transplant surgery. Costs include laboratory tests, organ procurement, transplant surgeons and other operating room personnel, in-hospital stays, transportation to and from the transplant hospital for surgery and for checkups, rehabilitation, including physical or occupational therapy; and medications, including immunosuppressive or anti-rejection drugs which may cost up to $2,500 per month. The average cost of transplantation in 2008 ranged from $259,000 for a single kidney to over $1,200,000 for a heart-lung transplant. For a list of important questions to ask your insurance company, visit transplantliving.org .
- Put Your Financial Plan Together: Planning for transplant surgery requires financial planning. Health insurance may cover some or most of the costs, but insurance policies vary widely. Call your insurance company or your employer's benefits office to get detailed information about how your insurance company handles the costs related to your specific situation. For a list of important questions to ask your insurance company, visit transplantliving.org .
In general, you are responsible for any costs not covered by insurance. You need to think about what resources you will use to pay the costs not covered by insurance. These resources may include savings, sale of property, or other sources. Fortunately, you do not need to face these decisions alone. Members of the transplant team, such as the transplant center's social worker and financial coordinator (see below), can help you develop a financial plan and may be able to put you in touch with organizations that provide financial assistance to transplant recipients.
- Work with Your Financial Coordinator: The financial coordinator at a transplant center is a member of the transplant team. Financial coordinators have detailed information and experience with health care financing and hospital billing. It is helpful to speak with the financial coordinator before making financial decisions related to your transplant and to keep the coordinator up to date as your financial plans evolve. The financial coordinator can help you:
- Understand how your insurance company's benefits apply to transplant surgery
- Make a financial plan for paying for your transplant
- Make a financial plan for nonmedical (for example, living expenses) costs
- Locate additional sources of funding, if necessary
- Understand (and, if necessary, correct) bills from hospitals, doctors, pharmacies, and other providers.
More detailed information on finding financial resources for a transplant may be found at:
- Find Out if Medicare or Medicaid Might Help You: Medicare is a federal program, and Medicaid is operated by individual states. Both are health insurance programs that can help eligible people pay for the costs of transplantation.
Medicare is available for people age 65 or older, people who have certain disabilities, or people who have end-stage renal disease (ESRD). The Medicare Part A insurance plan is available free to those who qualify and covers inpatient hospital care and some nursing home care. People who wish to participate in the Medicare Part B insurance plan pay premiums; Part B covers outpatient care, doctor bills, some home health care, and prescription medicines including, in some cases, immunosuppressive (antirejection) drugs.
Medicare certifies transplant programs throughout the country, and you must use a Medicare-approved transplant facility in order to receive full Medicare benefits. To find out more about Medicare-approved transplant centers or Medicare benefits for transplantation, visit the Medicare website
or contact your local Social Security office
Medicaid is an insurance program for low-income persons and is funded jointly by the federal government and the states. States determine who is eligible and what benefits and services are covered. Some states' Medicaid plans cover only transplant procedures performed within the state (unless there is no transplant center for that organ in the State). Some States' Medicaid programs do not cover transplantation. For more information on Medicaid, contact your financial coordinator, local Social Security office, the Social Security information line at 800.772.1213 or the financial coordinator at your transplant center.
4. Waiting for a Donor Organ
Waiting for a donor organ can be a stressful experience, especially because you do not know how long you will wait. The median wait for each organ is listed below:
> OPTN Annual Report 2008
- There are important things transplant candidates can do to ensure they are ready for surgery when the important call comes.
- Take Care of Your Health: Try to stay as healthy as possible and take your medicines as they are prescribed. Notify your transplant coordinator if any additional medicines are prescribed or altered or if you are hospitalized for any reason.
- Keep Your Scheduled Appointments with Your Physicians: Until your transplant, you will need to meet with members of the transplant team in order to evaluate your overall health.
- Follow the Dietary and Exercise Guidelines: Weight management is very important while waiting for your transplant. A dietician and physical therapist can work with you to plan and develop a diet and exercise program that will give you the greatest benefit before and after transplantation.
- Occupy Yourself by Staying Involved: Spend time doing what you enjoy and stay as active as your physical condition will permit. Keep up with your work, studies and/or leisure activities, or start a project or hobby that can help distract you and make time pass more quickly.
- Maintain Contact with Family and Friends: Good company will take your mind off of waiting and enrich your life.
- Make Sure You are Available: It is important for your transplant team to know how to get in touch with you at all times. Pagers, cell phones or remote answering machines may be required by your transplant center. Your transplant coordinator may recommend that you stay within a certain geographic range.
- Be Prepared with Transportation: When you are placed on the organ waiting list, your first responsibility is to plan how to get to the transplant center as soon as you are notified that an organ is available. Prepare yourself for this call by making the necessary arrangements for transportation well in advance.
5. Understand How Matches Are Made and Organs Are Allocated
Policies, implemented by the OPTN, are in place to regulate how organs are allocated to those on the waiting list. Because of specific organ characteristics, including the degree of matching required and the number of hours the organ can be outside the body and still be viable, there is a different policy for each organ. To learn more about how organs are matched and allocated, go to the Matching Process
6. After Your Transplant
After your transplant, take the best care of the gift you have been given. Issues like medications, nutrition, and staying healthy must become your new focus. You will transition from waiting for a donor organ to learning how to manage medications and their side effects as part of daily life.
- Be a Partner in Your Follow-up Care: Even years after surgery, doctors will continue to monitor the health status of both your transplanted organ and your whole body. Laboratory tests are a regular part of a transplant recipient's life. Understanding the purposes of the tests can make it easier to follow specific instructions and get accurate results. Talk to your transplant team about what ongoing monitoring will be needed, how much can be done at home, and what will require visits to the transplant center or other locations.
- Learn What to Expect from Your Anti-Rejection Medications: Immunosuppressant medications that stop the body from rejecting the transplanted organ are also an important part of life after transplant surgery. In general, the suppressed immune system can be slower in defending against germs. Transplant recipients may be somewhat more vulnerable to infections and may find it more difficult to recover from certain infections and illnesses. This is especially true for the first 6 months after surgery but will remain an ongoing concern. You can protect your health by following good prevention practices to avoid illness and injury and by seeking treatment early when illness does occur.
- Know Your Pharmacist: Transplant recipients usually need to take an array of medications. Some will be new medications prescribed after transplant surgery. Some may be continued from before surgery. Certain medications may be taken several times a day while others are taken only on certain days. Transplant team doctors may have to change medications or adjust dosages every few days or weeks to find the best combination for maximum benefit and minimum side effects. In short, managing medications after transplant surgery can be complex and confusing.
- Selecting a good pharmacy and getting to know your pharmacist can help you understand your medications and manage your medication schedule. Pharmacists can help explain effects and side effects of medications. Sometimes they can recommend tools like timers and organizers to help you keep track of medications. The social worker at the transplant center should be able to provide a list of pharmacies to choose from. Pharmacy services and prices vary. If you are not limited to particular companies by your insurance, shop around for lower prices and for features such as home delivery, refill reminders, and ability to speak with a pharmacist directly by phone or in person. Important questions to ask your pharmacist about pharmacy services and about medications are listed at Medications: Protecting Your Transplant—Questions to Ask and on page 41 of What Every Patient Needs to Know (PDF - 3.64MB)
- Stay Healthy: Healthy lifestyle options are good choices for organ recipients as they are for everyone. Following a low-fat diet, exercising regularly, and avoiding smoking promote the health of your new organ as well as the rest of your body. Your doctor and the transplant center dietician can help develop a plan for healthy diet and appropriate exercise during the healing process and a transition to normal healthy life afterwards.
- Eat Well:
- Eat a balanced diet with plenty of fruits and vegetables.
- Eat a minimum amount of salt, processed foods and snacks.
- Use herbs and spices to add flavor, instead of salt.
- Watch your food intake and drink plenty of water (unless you are told to limit fluids).
- Try to eat high-fiber foods, such as raw vegetables and fruits, which make you feel full.
- Add calcium to your diet by eating calcium-rich foods, such as low-fat dairy products and green, leafy vegetables or calcium supplements.
- Eat as little fat and oil as possible.
- Read food labels so that you can be smart when food shopping.
- Become more aware of serving sizes that are listed on food labels.
- Because protein helps you build muscles and tissue, which will help you heal after surgery, eat foods high in protein, such as meat, poultry, fish, eggs, nuts (without salt) and beans.
- Exercise: Most people are weak after any surgery. Transplant recipients must recover both from the operation as well as the illness or injury that caused the need for a transplant. As a result, exercise and muscle strain should be limited when you first return home. Talk with your doctor about what to expect for physical reconditioning and any activity limitations or restrictions.
As you start to feel better, regular exercise will help you regain your strength. Because you may feel tired at first, you should take rest breaks during exercise. Gradually, increase the amount and type of physical activity you enjoy.
7. Contact Your Donor Family
Sometimes organ recipients want to thank the family of their donor. Sometimes donor families want to check on the health and well-being of the person who received an organ from their loved one. The possibility of this human contact lifts the process of donation and transplantation above the mechanics of medicine and surgery and makes it a true sharing of life, gratitude, and love.
Transplant centers and OPOs are required by law to protect the confidentiality of donors and recipients. However, they can arrange for contact between the families when both sides agree. The process usually begins with a letter from the recipient to the donor family, sent in care of the transplant center. Different centers have different procedures, but general guidelines for the first letter to the donor family are outlined in the fact sheet, Contacting Your Donor Family