Helpful Tips for Living Donors and Caretakers

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 transplant team, 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 possible, write down your questions and 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 give 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.
   

Transplant centers have compiled statistics on donor and recipient outcomes. Or, visit the Scientific Registry of Transplant Recipients (SRTR) website to look at statistics for different centers.

This is the best source for information and questions about surgery and recovery. You can also connect with an NKF Peer Mentor to hear their experience with transplant and ask questions.

It will be a big help to talk to others who've been through it before!

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.

Many donors walk regularly before their surgery. Working out generally makes your recovery easier and faster. Follow your doctor's advice.

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.

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.

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.

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.

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.

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.

As we have already stated, living donation is a 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. 

You and your care partner (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 out of bed will be one of the most important things you can do to recover. This does 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 more unsteady 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.

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 if you follow the advice of your team and do not overdo 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. 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 procurement organization or local NKF office 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.