Waiting for a Donor Organ
For many families, one of the toughest parts of the transplantation process is waiting for a suitable organ to be found. The length of time will vary depending on several factors: the type of transplant needed, your child's blood type, the severity of his or her illness, and his or her weight and height. The transplant team will give you an approximate estimation of your child's waiting time.
The transplant team will look for a new organ that matches your child's as closely as possible. This will give your child the best chance for a successful transplant. Your child, as well as any potential donors, will have their blood tested to make sure the blood types are compatible.
Living Donor Transplants
Some organs, like the liver, can be transplanted from living donors. If a living donor is found for your child, the wait can be as short as a couple of weeks. The transplant can be scheduled as soon as your child and the donor have finished being tested. If a living organ donor can't be located, your child will be put on a computerized national waiting list to receive an organ from a cadaveric donor, or a person who was seriously ill or injured and did not survive. There are many people on the lists, so the average wait time for an organ transplant may take months or even years to receive a transplant.
Maintain Health During the Waiting Period
Once your child is placed on the waiting list, you will receive a confirmation letter, and your child's primary care physician will continue to monitor and deal with any day-to-day health concerns. You may be issued a beeper if your family travels or is away from home for extended periods. You will be assigned a transplant coordinator, who will be available to answer any questions or deal with any concerns you may have while waiting for a suitable organ. As soon as an available organ is matched to your child, the transplant coordinator will call you; you'll have to go to the hospital immediately. Keep in mind that your coordinator must be able to get a hold of you at any time, so you should prepare a list of numbers of your friends and relatives for the coordinator.
However long the wait ends up being, you may feel powerless, like there is nothing you can do during this time. Your most important job as a parent now is to help your child stay healthy and calm as possible. Although you can't predict when you will receive the call, there are a number of things you can do to prepare for that day and improve your child's chances for a successful transplant. Taking action may help you feel better, too.
Prepare to go
You may need to leave for the hospital at a moment's notice, so get whatever you can ready now.
- For your child, pack loose-fitting clothes, pajamas, a robe, slippers, underwear, and bathroom supplies. Your younger child might want to take along a favorite book, toy, or blanket. Older kids can bring things to pass time such as games, books, portable music and headphones, and small craft kits.
- If you live out of town, you'll want to pack for yourself (and possibly the rest of your family), as well. Of course, parents are allowed and encouraged to visit the hospital room as often and for as long as they want. Younger brothers and sisters may be restricted from visiting while your child is recovering from surgery. This is to prevent the spread of germs to your child; he or she might also be tired and/or busy learning to care for the new organ. The Pittsburgh area has many conveniently located lodgings to accommodate you and your family.
- Plan your travel arrangements in advance. The hospital cannot make these arrangements for you at the time of notification. You should plan your route and what form of transportation you will take (cab, bus, train, car or plane), who will accompany you, and how you will cover the transportation expenses. If you need help making these advance arrangements, ask the advice of your social worker.
Get on with life
This may be hard to do at the same time you are trying to make preparations, given all the uncertainty and stress. However, it is important to make the effort.
- Try to keep busy doing normal things as much as possible. This doesn't mean you are pretending things are normal when they aren't. The way you go about your daily activities may change, but most likely it is possible to continue at least some of them. It is reassuring for both you and your child when some things remain constant. Just sitting around waiting will magnify your worries.
- If your worries feel overwhelming, talk with the hospital social worker or psychologist. They're trained to help you during this stressful time. They may even be able to help you find a support group for parents in the same situation as yours, as well as support groups for kids.
Keep your child's health and spirits up
- If your child is able to, encourage him or her to exercise daily. Your child might enjoy trying out new activities with family or friends. If your child wants some time alone to think, riding a stationary bike while listening to music is a good exercise. Make sure to check with your child's doctor or physical therapist before starting a new activity.
- Keep up with any current treatments. If your child is on medications or other treatment while waiting for a new organ donor, it's important to stay with it. It's just as important as ever for your child's health, and so are doctor appointments.
- Bring your child to the dentist for a check-up. It's best to find and take care of any dental problems now, because cavities or gum disease could cause serious infections after a transplant. Let your doctor know if your child has any loose teeth; they may have to be removed for the same reason.
- Your child's diet is always an important part of his or her health. Nutritious foods that are low in fat and salt are best. Ask your coordinator or dietician for menu suggestions.
Learn more about the UNOS Waiting List.
