Waiting for a Kidney

If you are approved by the Medical Review Board as a transplant candidate and the final approval from your insurance company has been received, your transplant coordinator will contact you for your permission to add your name to the United Network for Organ Sharing (UNOS) waiting list. This means that your name, address, phone number, cell phone number, status, blood type, and body size will be placed in the national computer with UNOS.

Kidney Allocation
The current kidney allocation system has been in place for over 20 years. Different allocation plans are being reviewed and recommended by UNOS to improve the system. Currently, you are listed for a kidney as either Active or Inactive. Status 1, 5 and 6 are active statuses and Status 7 is inactive. You accrue time on the waitlist and the candidate with the longest wait time that matches the blood type and tissue typing of the available donor is chosen.

There are two sources of kidneys for transplantation:

Living Donors
A kidney can be donated by a family member or a close friend, as long as the donor has a compatible blood type and is in good health. The advantages to this type of donation are that there is no waiting period, the surgery can be scheduled in advance, and statistically, the kidneys last longer.

Sometimes willing kidney donors have an incompatible blood type with their intended recipient. A new arrangement called kidney paired donation matches one incompatible donor / recipient pair to another pair with a complementary incompatibility, so that the donor of the first pair gives to the recipient of the second, and vice versa. If you are interested in more information on paired donation, please discuss this with your physician or kidney transplant coordinator.

Non-Living Donors
Sometimes a compatible living donor cannot be found. In that case, a kidney can be obtained from an organ donor who has died.

Your kidney donor will be chosen according to kidney size, blood type, and matching to your tissue type. The kidney must fit into your body about the same as the original organ.

You will not receive personal details about your donor. If you and your family wish to express your thanks after your transplant, you may write a letter to the donor’s family. Do not include your last name or other personal details. Your nurse coordinator will forward your letter to the donor’s family through Lifelink, Inc, our local agency that handles organ donation.

Personal Care While Waiting for Your Kidney Transplant
It may be some time before you have your transplant surgery. While you wait, it is important to follow these steps:

See your nephrologist and attend dialysis regularly
You will see your nephrologist and attend your scheduled dialysis treatments regularly while you wait for your transplant. He or she will assess your health, order lab tests, adjust your medicines and tell you how often to have check-ups.

You will also need to come back to see us for checkups and you will need to complete annual updated testing. if you do not come back to see us and do not complete your annual testing as requested, you will be removed from the waitlist.

Maintain your physical health
While it may not be possible to improve muscle strength because of your kidney condition, it is important to try to maintain your current physical condition and stamina. This can be done by following a regular exercise routine. Activities such as walking, biking, swimming, dancing, etc. are all good activities. We do not recommend work against gravity, such as heavy lifting, pushing (push-ups) or pulling (sit-ups) as this puts extra strain on the lung.

Eat the right foods
A healthy diet is vital to maintaining your health while you wait. It also contributes to the success of your transplant after surgery. Pay special attention to controlling your sodium intake, following low cholesterol guidelines, and achieving weight loss goals if necessary.

If you do not meet the required weight, your dietitian and doctors will help you design a meal plan. You need to be at a healthy weight to stay on the waiting list.

Maintain a nicotine- and chemical-free lifestyle
We may test you for nicotine and/or drugs at any time. If we find illegal drugs in your body, you will be taken off the waiting list and will be required to complete a formal program. Regular attendance in groups such as Alcohol Anonymous or Narcotics Anonymous are encouraged to help you maintain your sobriety.

Call us if your insurance changes
If there is any change in your insurance, call your nurse coordinator right away. We may need to re-apply to your new insurance agency for permission to do a transplant.

Frequently Asked Questions While Waiting for a Transplant

How will I know when there is a donor?
You will need to carry a cell phone so we can contact you quickly when a donor becomes available. Once a donor is available, we’ll call your home telephone first. If there is no answer, your cell phone will be called next. Make sure you carry your cell phone anytime you are out of your house. If your home computer connects to your only phone line, be sure to keep your cell phone on while someone is using the computer.

You must call the transplant office any time you go into the hospital or on vacation, are admitted to an outside hospital, or are in an area where cell phone service is unavailable.

What if I get sick while I am waiting?
It is important for you to keep the transplant team up-to-date about your health after you have been accepted as a transplant candidate. Please notify the transplant team of all illnesses and infections such as pneumonia, dental abscesses or major skin infections. Any infection must be treated before your transplant. If your overall health worsens, notify your transplant coordinator, as we may need to change your status with UNOS.