One treatment option for FSGS and other chronic kidney diseases may be a kidney transplant. Kidney transplantation is a major surgical procedure with a success rate of about 95% (95% of transplanted kidneys will be functioning one year after the surgery). During this surgical procedure a surgeon places a donor kidney into the abdomen of the patient in kidney failure. Only one donated kidney is needed to replace the function of two failed kidneys, making living-donor kidney transplantation an option. If a compatible living donor isn’t available for a kidney transplant, the patient’s name may be placed on a kidney transplant waiting list to receive a kidney from a deceased donor.
What are the Different Kinds of Kidney Transplants?
There are two type of kidney transplant based on the type of donor: a living donor transplant and a deceased donor transplant. There are advantages and disadvantages to both types of kidney transplants.
Living Donor Transplant
A living donor transplant is a procedure where a person agrees to donate one of their two kidneys to the transplant patient. Surgeons perform a minimally invasive surgery to remove a living donor’s kidney (usually laparoscopically) and then insert that kidney into the abdomen of the kidney transplant patient.
Living donor transplant advantages include:
- Shorter waiting period as patients do not spend long periods of time on a waiting list
- Fewer complications
- Living donor kidneys generally function longer than deceased donor kidneys
- Surgery can be planned to suit the donor and patients schedule
- A preemptive transplant can sometimes be scheduled avoiding the need for dialysis
- Some research shows that an early kidney transplant, with little or no time spent on dialysis, can lead to better long-term health
Living donor transplant disadvantages are:
- A healthy donor has to undergo an optional surgery to remove a healthy kidney
- The donor will have a 6 week recovery period
- FSGS and other glomerular diseases can return to attack the transplanted kidney
For more information on living donation, visit the American Transplant Foundation and check out the living donation resources at the bottom of this page.
Deceased Donor Transplant
A deceased donor transplant takes place when someone who has consented to donating his or her organs upon death passes away. In situations where the wishes of the deceased donor are not known, family members may consent to organ donation. The majority of kidney transplants in the United States are from deceased donors. Over 60,000 Americans are currently on the waiting list for a deceased donor kidney.
Deceased donor transplant advantages include:
- 95% of transplanted kidneys will be functioning one year after the surgery
- A functioning transplanted kidney provides a better quality of life than dialysis
- A living donor does not need to undergo a kidney donor operation
- Transplant patients live longer than those on dialysis
- If the FSGS or glomerular disease recurs, a living donor’s healthy kidney was not affected
Deceased donor transplant disadvantages include:
- There is a world wide shortage of deceased donor kidneys and wait time can be up to 6 years in some places (children’s wait time is usually much shorter)
- Deceased donor kidneys can take longer to begin functioning
- The life expectancy of a deceased donor kidney is shorter than a living donor kidney
What does the Transplant Procedure Involve?
Once a compatible organ has been found, the surgeon places the kidney on one side of the recipient’s front lower abdomen, using an 4-10 inch incision. This incision is generally in the middle of the abdomen in small children. The kidney placement in the abdomen allows the surgeon to more easily connect the kidney to the bladder. To ensure an adequate blood supply, the surgeon also attaches the kidney to an artery and vein that lead to the legs. In most cases, the patient’s native kidneys are not removed. The transplant operation typically lasts anywhere from 2½-5 hours.
How does the Transplant Process Work?
Once a patient reaches CKD Stage 4 he or she should ask his or her doctor about the transplant process. The patient should ask for referrals to a transplant center for evaluation or find a transplant center they would like to attend. Transplant programs can be found by state or region using the website of the Organ Procurement and Transplantation Network.
Once a transplant center has been chosen, the transplant team will schedule the patient for a transplant evaluation to determine whether a kidney transplant will be safe and beneficial for the patient. This evaluation if usually two days of tests and evaluations including:
- Blood tests, including blood and tissue type analysis
- Imaging studies, including x-rays, echocardiograms, VCUG , ultrasounds, etc.
- Consultations with specialists for other conditions (psychiatrists, transplant surgeons, UNOS representatives, social workers, financial advisors, and transplant nephrologists)
The transplant team will then compile the information and meet (usually several times each month) to approve the patient for transplant. Once approved, the transplant coordinator will add the patient to the OPTN national list of all people waiting for a kidney transplant. The transplant team will contact the patient in writing about 10 days after they are listed to let them know the date and time that their name was added to the list. Depending on the type of transplant a patient is seeking, they may be listed as active or inactive. If they are inactive on the list, they are still accruing time on the list but will not be called for a kidney if their name comes up first on the list. For more information on how the list works visit United Network for Organ Sharing (UNOS) who manages the list.
At this point, the patient will also be encouraged to seek out potential living donors among friends and family. If a suitable living donor is identified, the donors blood will be tested in a cross match with the patients blood. If the results are negative, the donor will proceed with testing similar to the transplant patients transplant evaluation. For more information on the living donation process visit Transplant Living.
If a living donor can’t be identified the patient will be placed on the active waiting list for a deceased donor kidney. Adult patients are generally on the waiting list for one to four years. Children’s wait time for a deceased donor is generally less than one year. Waiting time for a kidney transplant may vary due to region, blood type, tissue type and several other factors. While waiting for a deceased donor kidney, patients need to stay in close communication with their transplant team and be prepared to get to the hospital quickly should they receive notice that a donor kidney is available.
What is Life Like After Transplant?
After transplant, the patient will stay in the hospital for as little as three days. Children generally spend at least a week in the hospital. Full recuperation generally lasts about 6 weeks. Even years after surgery, the transplant team will continue to monitor the health status of both the patient and their transplanted organ. After transplant, patients should expect the following:
Continued Care After Transplant
After leaving the hospital, patient will be monitored closely. Frequent lab tests are a regular part of a transplant recipient’s life. Tests will start off occurring weekly, then monthly, and eventually every three months to keep an eye on the new kidney’s function. Many transplant centers require patients to stay close by for a specified amount of time after transplant.
Immunosuppressant medications that stop the body from rejecting the transplanted kidney are required for the rest of a recipients life. The transplant team will provide adequate training and information surrounding these medications and their side effects. In general, the suppressed immune system is slower in defending against germs. Transplant recipients are more vulnerable to infections and illness and may find it more difficult to recover from certain infections and illnesses. This is especially true for the first 6 months after surgery when immunosuppressants are at their highest dose, but will remain an ongoing concern. Patients will be trained to protect their health by following good prevention practices and by seeking treatment early when illness does occur.
Returning to Wellness
Maintaining a healthy lifestyle after transplant recovery is vital to a transplant patient’s success. The transplant team will give the patient specific guidelines for increasing his or her activity levels and following an appropriate nutrition plan.
A renal dietitian will recommend a nutritious diet with the right balance of carbohydrates, protein and fats. Patients may still remain on a low sodium diet. Foods that contain higher amounts of sodium, phosphorus and potassium may be reintroduced, depending on labs and other health conditions. Most transplant centers ask patients to avoid buffet style restaurants where food sits out for long periods of time. There are also certain foods that interact with anti-rejection medications and should be avoided.
Fluid Restrictions to Fluid Minimums
With a healthy working kidney, patients will no longer have fluid restrictions. Many transplanted kidneys require a fluid minimum to stay happy and hydrated. The transplant team will help patients find the right amount of fluid intake per day. Typically, the minimum is at least 2 liters per day.
What are the Costs and how can Patients Finance a Kidney Transplant?
When considering a kidney transplant, the associated costs and how to best handle them must also be considered.
The costs of a kidney transplant include the transplant evaluation, testing, surgery, follow-up care, and medication.
These costs are variable and depend on the patient’s recovery and time spent in the hospital. Other costs associated with transplantation include:
- Extensive lab tests
- Fees for transplant surgeons and operating room personnel
- Organ recovery
- Lodging and food for family members while the patient is hospitalized
- Physical therapy and rehabilitation
- Anti-rejection drugs and other medications (monthly estimated cost is approximately $3,000 immediately following transplant)
According to the United Network for Organ Sharing (UNOS), the first-year billed charges for a kidney transplant are usually more than $262,000.
Most patients rely on a combination of funding sources to pay for their kidney transplant. During the transplant evaluation, a patient should meet with a financial coordinator who will research what is covered under the patient’s current medical insurance and discuss other financing options. Most common funding sources include private insurance, Medicare and Medicaid, CHAMPUS, Veterans Administration Benefits, Social Security Income (SSI)/Social Security Disability Income (SSDI), charitable organizations, and fundraising campaigns.
- Private Insurance- Private insurance often pays for a large portion of the kidney transplant costs. However, the terms and extent of coverage vary depending on each policy. Usually, insurance companies will pay around 80% of hospital charges. Patients should be sure to ask their insurance if they cover organ recovery and medications after transplant.
- Medicare- State and/or Federal Government Funding is usually available to transplant patients. Medicare has three main parts: A, B, and D. Part A helps with inpatient costs, such as hospital stays, and has no premium. Part B pays for outpatient care, such as dialysis and doctor and specialist visits, and does have a premium. Part D helps pay for prescription coverage, which also has a premium. For more information on Medicare, visit www.medicare.gov.
- Government Programs- Other government programs are available. Patients should ask their social workers or financial coordinators about other programs they might qualify for.
- Charitable Organizations- Charitable organizations do offer financial assistance to transplant recipients. Please visit our ‘Resources’ section at the bottom of this page for more information.
- Fundraising Campaigns- Fundraising campaigns are a great source to help cover expenses not paid by medical insurance, such as transportation, food and lodging, and lost wages. Please visit our ‘Resources’ section at the bottom of this page for more information about fundraising resources.
Transplant Living – A comprehensive website provided by UNOS with information for transplant patients before, during, and after their transplant, and pediatrics.
United Network for Organ Sharing – Houses the transplant waiting list and explains transplant allocation.
American Transplant Foundation – Another comprehensive organ donation website that focus on education and advocacy. They also provide one-time grants to living donors and transplant recipients.
Gift of Life Donor Program – Provides information about transplant and organ donation.
Kidney Link – Helps those in need of a kidney transplant navigate the process easily and effectively.
National Kidney Foundation – Easy-to-understand information about kidney transplants.
National Kidney Registry – The mission of the NKR is to save and improve the lives of people facing kidney failure by increasing the quality, speed, and number of living donor transplants in the world.
American Kidney Fund – AKF offers grants, prescription drug resources, and medical financial assistance for healthcare premiums.
Children’s Organ Transplant Association (COTA) – Helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA does not charge for its services and does not take a percentage of funds raised.
National Foundation for Transplant – Offers fundraising platform and expertise for all transplant patients.
American Transplant Foundation – Patient Assistance Program provides one-time grants to living donors and transplant patients.
Living Donor Resources
National Living Donor Assistance Center – Provides reimbursement of travel, subsistence, and other non-medical expenses that may be authorized by the Secretary of Health and Human Services to individuals being evaluated for and/or undergoing living organ donation.
Living Kidney Donor Network – Great source of educational and communication training programs for those interested in pursuing living kidney donation.
American Transplant Foundation – Offers grants for living donors- Easy online application.