Waiting for a donor organ can be a stressful experience, especially because the amount of time you'll have to wait is unknown. There are many things you can do to prepare yourself while you wait for a donor lung to become available. Changing your lifestyle before your transplant will help you adjust after the transplant.
Below are some guidelines to follow.
How can I prepare myself while I'm waiting for my transplant?
Take care of your health
Try to stay as healthy as possible by carefully following the recommendations of the Lung Transplant Team. Take your medicines as they are prescribed and notify your transplant coordinator if antibiotics are prescribed, if your steroid dose changes, or if you are hospitalized for any reason.
Follow the dietary guidelines provided by your dietitian
Weight management is very important while waiting for your transplant. Your dietitian will recommend a weight range for you to maintain. We require that you quit drinking alcohol, especially if you drank heavily in the past (2 or more drinks per day, including beer and wine).
Perform your breathing exercises and maintain your exercise program, as directed by your doctor
Stop and rest if you experience any discomfort, shortness of breath, or chest pain during any activity. A physical therapist can work with you to plan and develop an exercise program that will give you the greatest benefit before and after transplantation. Continue your enrollment in a local pulmonary rehabilitation program and remain firm in your commitment to the program.
Keep all of your appointments with your health care providers
Until your transplant, you will meet with the transplant pulmonologist and transplant coordinator every 2 months in order to evaluate your overall health.
Make sure you are available
It is important for the Lung Transplant Team to know how to get in touch with you at all times. Your Transplant Team should have the telephone numbers of where you can be reached 24 hours a day, as well as the names and telephone numbers of family members who can reach you.
You must obtain a pager or cell phone so we may contact you immediately should organs become available for your transplant. We encourage you to purchase a telephone answering machine with remote access so you can check your messages frequently when you are away from the telephone. Be sure to inform us of your pager and/or cell phone numbers. If you plan to be out of town (even for one day), give a phone number to the transplant coordinator. Your transplant coordinator might recommend that you stay within a certain geographic range.
Be prepared with transportation
When you are placed on the organ waiting list, your first responsibility is to plan how to get to Cleveland Clinic as soon as you are notified that a lung is available. Prepare yourself for this call by making the necessary arrangements for transportation well in advance.
If you live more than 1½ hours away from Cleveland Clinic, the transplant coordinator on call will arrange transportation for you and one family member.
If you live less than 1½ hours away from Cleveland Clinic, you must prepare to have transportation available any time, day or night.
Be prepared by packing your bags in advance
You'll need to be ready to leave as soon as you get the call that a lung is available.
Be sure to include your insurance information and a 24-hour supply of medicine. If you need oxygen, make sure you have enough to get you to and from the hospital (in case the surgery is canceled).
All necessities, such as pajamas and bedding, are provided and laundered for you. However, you might prefer to bring your own pajamas, slippers, robe, or other comfortable clothing (provided you have someone to do your laundry for you). Please bring your toothbrush, toothpaste, and any other toiletries you might need.
You should expect to stay in the hospital 2 to 3 weeks.
Because the hospital is not responsible for lost or stolen personal items, please do not pack valuable jewelry, credit cards, checks, or large amounts of cash.
You also might want to pack a book, magazine and a family picture or other comforting reminder of home to keep at your bedside.
Learn all you can about the transplantation process and ask for support
Ask your social worker about support groups and other resources so you can receive more information and learn about other transplant recipients - experiences.
If possible, don't turn your back on your favorite activities. You can spend the time doing what you enjoy. Now might be a perfect time to learn a new hobby or continue your old hobbies. The time will pass quickly if you spend it doing things you enjoy.
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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 11/15/2006...#4733