Maintaining Your Health While Waiting

You may be waiting for a transplant for a long time. While you're waiting, there are some things you will have to do in addition to your normal routine, to ensure you remain healthy and eligible for transplant.

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Summary
  • Maintaining your health while waiting for a lung transplant is important in keeping you as healthy as possible — and eligible — for transplant surgery.
  • In addition to your cystic fibrosis treatment plan while you wait for a lung transplant, your transplant team may have additional requirements.

Following Your Transplant Center's Pre-Transplant Requirements

You will have appointments with your transplant team while on the waitlist. The frequency of these appointments will depend on your health while on the waiting list and the transplant center, as each center has different requirements for how often they want to see you. At these appointments, tests will be done to inform the team about your condition and update your lung allocation score.

It is extremely important that you attend all of your scheduled appointments and take all medications as directed by your transplant team. Doing so will help you stay healthy and avoid problems that could prevent you from having a transplant. Always notify your transplant team if you are hospitalized for any reason or if there are any additions or changes to your medicines. 

Some transplant centers may have additional requirements for patients. You may have to participate in pulmonary rehabilitation or receive education about the transplant process. Your transplant team will talk to you about the specific activities required while you're waiting for a transplant.

Continue Your CF Care Routine

The things you have always done to manage your cystic fibrosis will continue to be important as you wait for a transplant. Your new responsibilities in preparation for a transplant will not replace your CF treatment plan or care routine.

It is important that you:

  • Keep your weight within the range specified by your transplant team. Your dietitian will give you dietary guidelines that you should follow closely.
  • Maintain your fitness routine as prescribed to you by your CF care team or the transplant team.
  • Keep up with other regular health maintenance routines, such as going to the dentist and staying up to date on your vaccinations.

Talk to your transplant team about what is recommended for you.

Be Ready When the Phone Rings

The phone could ring at any time to let you know that there are donor lungs available for you. The transplant team needs to know how to reach you 24 hours a day, 7 days a week. You also should provide the team with the contact information of family and friends who know how to reach you. If you plan to be out of town -- even for a day -- alert the transplant team about your plans. They may suggest that you remain within a certain distance of the hospital.

It is important to be prepared to leave your home in a hurry. Have your bags packed with all the things you will need for a 2- to 3-week hospital stay. Plan for how you will get to the hospital.

Learn and Ask Questions

There is no question too big or too small. Use the time you have on the waiting list to learn as much as you can. The transplant team will answer any questions you have about the transplant process. Your social worker also may be able to provide you with reading materials so that you can educate yourself further about lung transplants. There are also other people with CF and families who have gone through the process and can share their experiences with you.

Do What You Enjoy!

If you feel well enough to keep doing the activities you enjoy, it is strongly recommended that you do so. If you don't feel well enough to do those things, see if you can modify the activities to accommodate your condition, or try something new. Staying busy will help pass the time and keep your spirits up while you wait.

Finding Out You Have a Donor

Once donor lungs become available, you will be called to the hospital. If the lungs are healthy, you will have your transplant within a few hours. A donor's lungs must be transplanted from the donor to the recipient shortly after the donor's death.

It is very common to be called to the hospital only to discover that the donor's lungs are not healthy enough for you to take them. This is referred to as a "dry run." Maybe this will never happen to you or maybe it will happen more than once. If it does happen, it can be extremely frustrating. It is important to remember that the lungs are being withheld in your best interest. 

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Topics
Lung Transplantation
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