Helpful Tips for Living Donors and Caretakers

The following is a list of suggestions from other living donors and caretakers. We hope that their experiences will help others through the process of donation. All the suggestions come with the heartfelt wish for donors to have a wonderful experience with donation. Please share this list with your family and friends.

This is not a comprehensive list, nor is it intended to replace the instructions from your transplant team. Rather, it is a compilation of ideas from donors and caregivers that have been involved in the donation process. Your transplant team and hospital staff will care for you and help you recover. You can review this list with your transplant team so that they can share in the list and give their feedback.

Pre-Donation

  • Buy a few notebooks with pockets. These can be used for a number of different things:
    • Keep a journal. It can be helpful to have a history of what's happened, to look back on events and your thoughts and feelings.
    • Before your visits to the transplant center, write down all your questions. When you visit the nurse coordinators and doctors, you may forget all of the questions you have for them. Write them down and leave room between questions to write down the answers.
    • If at all possible, write down your questions and fax/email them to the transplant center. Sometimes you will come up with a question that you may feel funny asking in front of others, so write it down. They can get you the answers and save both of you time when you are visiting them.
    • Put together a list of names and phone numbers for your contacts at the transplant center. Keep the list near the phone, in your wallet, and with other family members.
    • If you have copies of your medical history and blood tests, you can keep them here for reference.
  • Some transplant centers have compiled statistics on donor and recipient outcomes for that center. Ask them if they have information they can share with you.
  • Join a local transplant support group in your area, if one is available. This is the best source for information and questions about the surgery and recovery.
  • Ask the transplant center if they can connect you with other living donors and recipients to help you through the process. It will be a big help to talk to others who've been through it before!

Preparing for Surgery

Undoubtedly, you have learned much about the practice of patience, since you have come through much testing and waiting to learn if you can donate. Draw on this strength and use it in taking care of yourself. Organize a support system and practice being your own advocate in gathering information on what you will need to do to take care of yourself. Many donors feel that donation was one of the best and most memorable experiences of their life. With preparation and information, donors are better able to have the experience that they hope for.

The following are suggestions for preparing for surgery:

  • Organize a phone tree or email group to update family and friends on the progress of your surgery. Designate someone as the lead person who will then instruct the next person on the list to pass on information. This way, you do not have to contact everyone when you may be dealing with many details in getting ready for surgery.
  • Ask your doctor to suggest a reasonable type of exercise for you to do in preparation of surgery. Many donors walk regularly before their surgery. Working out generally makes your recovery easier and faster. Follow your doctor's advice.
  • When packing for the hospital, pack loose-fitting, comfortable clothes so that your incision will not be irritated. Most donors mention bringing sweat clothes that are stretchy and soft. Be sure to also bring comfortable underwear, socks and shoes. Most donors, too, wear hospital gowns after surgery because of IVs, etc. Keep it simple. Bring some warm clothes and socks in case your room is cold. Footwear should be comfortable, easy to put on (without bending over) and non-slip.
  • If you are in any way religious, don't be shy about dropping a note to your place of worship to ask for their prayers. Apart from the power of prayer, it can be a strengthening comfort to know that people are praying for you and thinking positive thoughts for you and the recipient during this time.
  • Consider packing a small, firm pillow that you can use as a "splint" pillow for the hospital and later in the car on the way home. A splint pillow is a pillow that you hold to your abdomen for support. You can press this pillow to your abdomen when you are getting up (since your abdomen will feel vulnerable and tender). Many donors remark later that they were scared to sneeze or cough because of the fear of pain or the concern that their incision will come apart. Your abdomen will be tender, but the stitches and/or staples that are used in the incision are secure ones. Coughing will be a good thing that prevents respiratory complications. The splint pillow can help make coughing easier. Also, a small pillow makes wearing a seat belt more comfortable. You could also use a back brace to help support your back.
  • A camera is nice in capturing the donation experience and the people who helped take care of you. A radio and/or CD player can be helpful in encouraging peace and relaxation while you recover; however, do be aware that hospitals cannot always safeguard your personal belongings so you will be responsible for these items. You may find it harder to concentrate on reading material with taking pain medicine, etc. Music, magazines, or books-on-tape can be nice diversions. If you have a tape recorder, you can also record your thoughts or feelings after surgery, as you may not feel up to writing.
  • Prepare your home beforehand. Consider having a chair with arms that you can push up on to help you in getting up and down. A heating pad is a good comfort measure for incisional pain.
  • It is a good idea to limit the number of visitors the night before surgery. You won't want to go into the day of surgery feeling tired. This also includes any work that you were thinking of doing. Be sure to follow your physician's requirements regarding fasting before the surgery. Your last meal before surgery should be light and non-greasy.

After the Surgery

After all the waiting and testing, the big day for you and the recipient finally arrived, and you are now in recovery. It is hard sometimes for people to put these kinds of hopes and feelings into words. You have undoubtedly done all that you could do for the surgery to be a success. No matter what the outcome is, this is a time of letting go and moving forward with the acknowledgement that no matter what, this was very, very special. You have done the giving part and now it is time to give to yourself and receive help from others.

It is normal for donors to experience a period of depression or anxiety after surgery. Keep this in mind and be gentle with your feelings. Many feelings and moods will come and go. Take note of them and remember that any depression that you feel will usually pass as well. Talk to your transplant team if those feelings linger. Take care of yourself during this time to help reduce stress. Ask for help and support from your family members, friends, and from other donors and recipients on the NKF website.

If you know your recipient, focus on the benefit that this person received by undergoing a transplant. Any discomfort you feel is for a very good reason. If you don't know your recipient, you can write down your feelings about wanting to be a donor as a reminder when you are recovering and may not be feeling well. Some anonymous donors receive a letter from their recipients if both parties agree. If this is your situation, you can refer to that letter as you recover.

The three biggest areas of recovery are dealing with pain, getting up and around, and fatigue.

  • Dealing with pain: As we have already stated, living donation is major surgery, and some pain will be involved. Let your team know if your pain is not relieved-at least to a tolerable level. It is hard to alleviate all pain; some of it will simply get better with each day. But if you are having pain that interrupts your sleep or is making getting out of bed a difficult job, let them know. Some donors do well with PCAs (patient controlled anesthesia) and some do better with oral medication. There are different methods and medications to use.

    You and your caregiver can be assertive and express your feelings. The more you get up, the easier the pain will be to deal with because getting out of bed relieves gas from building up. The gas and bowels that are still waking up from surgery can be the most uncomfortable part of the recovery, even more than the incision. You should be able to use less pain medication as the days pass.

    Ask the team about using a heating pad. You will be amazed at how much that will help with gas pains. You can have that ready at home, too, with an extension cord so that you can walk around your house for added comfort.
  • Getting up and around: Getting out of bed will be one of the most important things you can do to recover. This does do wonders with alleviating gas problems, preventing respiratory complications and preventing blood clots. Use the splint pillow already mentioned to aid in supporting the tender area of your incision. Get up from the bed in steps by easing up to a sitting position and then by eventually standing at your bedside until you're ready to move. With pain medications, it's important to get up with assistance in case you are sleepier or unsteadier than you realize. The nurses will let you know what to do. Work up your strength with each day. You can set goals with yourself of how far you will walk. Remember that it takes time.

    Stairs can be painful and tiring to maneuver, so some donors arrange to sleep downstairs while they are recovering. Find a place that is as close to the bathroom as possible so that you don't have to move around too much.

    Bring your splint pillow with you in the car when you leave to go home. It will help with any bumpy roads you will travel on as you go home.
  • Fatigue: This is one of the more surprising parts of recovery. Some donors are surprised at how tired they feel after surgery. It's normal to feel this way, and you will gradually get your strength back. Eat well and drink plenty of fluids. Talk with your transplant team about setting realistic goals for getting back to your normal activities and exercising again. Fatigue does pass, especially is you follow the advice of your team and do not overdue it. It is tempting to exceed what is realistic because you are feeling ok. You will run the risk of feeling exhausted the next day if you do so.

    With fatigue, as well as other symptoms that you are having, listen to what your body is telling you. Our bodies really are miraculous in how they recover. Generally speaking, let your body tell you when you should rest and then do it! This is your time to take care of yourself, too.

    And in the time that follows, you've gotten past the hard part now. The wait is over and the surgery is done. You and your recipient are moving on with your lives. Remind yourself of the miracle of it all. You may want to continue your involvement with transplantation. You now have a powerful story to tell of giving and receiving. You can contact the organ donation service in your area to ask how you can help if you'd like. No matter what, you can experience this choice of giving with peace.

For the designated caregiver: Your help in managing visitors and facilitating necessary rest will be invaluable. It is a good idea to keep the visitors to a minimum after surgery. The donor will be dealing with pain and fatigue. Even the most thoughtful visitors can be tiring if there are many of them. The donor is already giving and will probably not have the energy to give attention to visitors, even when the visitors are offering to help. While this may vary with donors, generally speaking, a limited number of visitors works better. The donor may be more tired than he realized he would be and his strength will come back with each day he is able to rest and eat well. This is major surgery and restful time is key to recovery!

One donor described an effective caregiver as being an "out of sight shadow or a really good waiter." Effective caregivers hear instructions that the donor may not remember and make sure that the donor eats and drinks adequately. They are at the hospital after surgery to help the donor walk the halls, if the doctor recommends that, and get out of bed. The nurses have more to do than most people realize, and caregivers are invaluable in helping with necessary things that are sometimes time-consuming.

Caregivers can help with driving, which can be difficult after the surgery, cooking, cleaning, running errands, and child care. Donors and recipients may need someone to stay with them for a few days after surgery to help with these details.

Caregivers also gently remind the donor that he is getting better and that recovery takes time. It's hard sometimes to remember that this surgery is usually harder on the donor because he is moving from a state of good health to a post-surgical period. While the donor is still considered healthy, he will need to recover and take good care of himself. Effective caregivers are both cheerleaders and assertive advocates in the process of recovery.

Resources for Potential Living Donors and Living Donors