Waiting for a Kidney to Become Available
There is no way to know how long you will have to wait before a deceased donor kidney becomes available for you. It could be between one and four years, and depends on many factors. Your physician can give you some information based on your blood type, degree of sensitization and other factors. Be sure to ask. After you complete the evaluation, and you are accepted and listed for an organ, waiting may be difficult. It helps to remember that once you get the phone call about a possible match, things will move very quickly.
You may also be waiting for a living donor to come forward. Again, this can be a difficult time and we are here to help and support you.
While you wait for the organ, keep your body and mind healthy:
- See your doctor regularly
- Take your medications as directed
- Exercise to the best of your ability
- Follow your prescribed diet
- Consider joining a support group of pre-and post-transplant patients
Update the Transplant Institute with annual Pap smears, mammograms and stress tests, if told to do so by your nurse coordinator. Keep a record of any hospitalizations, infections or blood transfusions to report at each scheduled visit.
Support groups can provide reassurance and comfort, information, friendship and help in dealing with the emotional issues surrounding chronic illness and transplantation. We offer a weekly support group for liver patients who are pre- and post-transplant, and plan to offer other groups for kidney and pancreas patients in the near future. Your social worker and psychologist can help direct you to other support groups held here at BIDMC and in your local community.
It is especially important during this waiting time to stay positive and continue to address any personal growth and development challenges. We have a highly regarded
behavioral health program to help people cope with the difficulties of chronic illness, to stop smoking, lose weight, treat depression and anxiety, and manage stress. You will work closely with the social worker and psychologist both before and after your transplant. We believe that your emotional well-being is important to the success of transplantation.
Multiple Calls and False Alarms
Unfortunately there is the chance that our team may call you to the hospital, only to find there is a problem with the new organ. Or you may come to the hospital with a medical problem - one that you did not know about - that could jeopardize your health or the success of the transplant. In these cases, it may not be possible to do the operation. Understandably this decision can be disappointing and heart-wrenching. You may feel sad, depressed, disappointed, worried and angry. Some patients say that it is a good "rehearsal" for when the transplant really does happen. Again, our behavioral health team is here to help and support you and your family during this difficult time.
Double-check Phone Numbers
Make sure we can contact you day and night, no matter where you are. We only have 60 minutes to accept or decline an organ for you, so it is critical that we know how to reach you at all times. Check to be certain that we have the right phone numbers for a family member or friend - someone who will always know where you are. We will contact this person if we can't reach you directly.
Ready and Waiting
Because we have only one hour to decide if the organ is right for you, including the time it takes to locate you, it is important to be organized and ready to leave as soon as we call.
Here are some steps you can take to make sure you can leave home on a moment's notice:
Pack your Bag
It's a good idea to pack a bag for the hospital in advance. You may want to include personal items such as your toothbrush, comb and brush, a wrap-around bathrobe, slippers, deodorant, and other items that will make your stay more comfortable; paper and pen; reading materials; and a small amount of cash. Please do not bring jewelry, large amounts of cash, numerous credit cards, or anything else of value. You will need a phone card or credit card to make long distance telephone calls while you are in the hospital (unless you call collect). You may also bring and use your own cell phone.
Make two Lists
Make a list of any other items you think you will need after your surgery, and another list of the people who need to be called when your organ becomes available. Tuck both into your bag, and when you check into the hospital, you can give the lists to a loved one, who can bring the items you need and call family and friends.
Have Insurance Handy
Always carry your health insurance card with you. That way you will have it, without searching high and low, when you get the call to come to the hospital.
Plan your Route
If you are driving to the hospital, choose a driver who will be available when the time comes. You may even want to choose another person as a back-up driver. Map out your route to the hospital. Have an alternate route ready in case there are traffic hold-ups or other problems with the roads.
Verify Flights and Airlines
If you are flying to the hospital, know the flight schedules before you get the call to come to the hospital. Verify available flights frequently. Check more than one airline in case there is a delay or cancellation on the airline you plan to use. Make sure you have someone to drive you to the airport on very short notice. Decide ahead of time how you will get from the airport to the hospital - by taxi or rental car?
Consider the Children
If you have children, decide who will care for them when you go to the hospital and during your hospital stay. Talk to them about the plan before you get the call to come in, so they understand what will happen. Our psychologist and social workers can help you talk to your children about transplantation in a way that they will understand and that will be most helpful to them.
Choose a Health Care Proxy
Do you have a health care proxy - a person you have chosen to make decisions about your medical care if you are unable to do so yourself? Think about who you want to choose and then talk to that person in depth. Be sure this trusted person is comfortable with the responsibility and is aware of, and will follow through with, your wishes about your medical care. If you do not already have a health care proxy form on file with the hospital, you can sign one when you arrive for your transplant and give it to your doctors.
When the Call Comes
When our transplant team calls and asks you to come to the hospital:
- Ask about any medications you should take (or not take) before you come to the hospital.
- Don't eat or drink anything after we call you. If you do eat or drink, it could delay the surgery while the anesthesiologists wait for your stomach to empty. Putting you to sleep for surgery with a full stomach is dangerous and is not done except in extreme emergencies.
- Keep in mind that you could possibly be sent home again if the transplant team discovers a problem with the new organ or finds that you have a new medical problem that could affect your transplant success.
- Get to the hospital safely.
The transplant team member who calls will tell you where to go when you get to the hospital.
If your kidney comes from a
living donor, please follow the instructions you received during your pre-admission testing visit about coming to the hospital.