Getting a second opinion is strongly encouraged if you are not approved for listing at your first transplant center. It is possible that another transplant center may make a different determination and accept you as a transplant candidate. The Cystic Fibrosis Foundation lung transplant referral guidelines recommend that you consult with at least two transplant centers -- including one that has experience with your specific barriers or contraindications -- before determining that you are ineligible for a lung transplant. Sometimes, a phone call from your CF doctor to another transplant center (“consultation” by phone) can be enough to determine whether you might be an acceptable candidate at the other center.
If you are being considered at a different center, you will be asked to meet with the members of the second transplant team to undergo an evaluation. In some cases, you may need to repeat testing at the second center, but this decision is made by the evaluating transplant center and will vary from center to center. In addition, your insurance may not cover the costs of additional testing.
If You Decide Not to Pursue Transplant
You may decide that you do not want to move forward with the lung transplant process and instead, live the rest of your life on your own terms. There is nothing wrong with choosing this path. If you do decide to forgo lung transplantation, you will work with your CF care team to pursue alternatives, such as palliative care, to develop a care plan that aligns with your personal goals.
You may decide at any point before your transplant that you do not want to go through with it. The only point at which it is too late to change your mind is after the transplant is done.
The final deterrent for new lungs was how going through the whole process and learning about the requirements of qualifying for transplant made me feel. I went to bed stressed and woke up stressed as well. I was miserable until I made my decision.” -- Randal Haller, adult with CF from the CF Community Blog
If you cannot or do not want to move forward with a transplant, you can choose not to be added to the transplant list. Though it is upsetting to think about what will happen as your health declines, it is important to discuss your wishes with your loved ones so that they can ensure that your wishes are honored. Support services are available to assist you and your family when you need them. Many of these services require insurance coverage.
- Home health aides may help with activities of daily living, household tasks, and medical or surgical management.
- Palliative care can help with the relief of pain, physical stress, and emotional issues.
- Hospice care services are available to help you manage pain and anxiety, to remain as comfortable as possible.
- Creating an advance directive will allow you to declare legally what kind of end-of-life care you want if you become unable to express your wishes.