Transplantation is a commitment that must be entered into carefully and agreed upon by the family along with the medical team. Lung transplants can often give recipients the chance to live a near normal life but does include lifelong medications and regular medical follow up.

The transplant process

• Lung transplant referral
• Transplant evaluation
• Evaluation tests
• After the evaluation
• The waiting period

Lung transplant referral

If your child is referred for lung transplantation, it is important to begin conversations and build a relationship with the team at your lung transplant center. The lung transplant center will call you before your appointment to review what to expect for the evaluation and provide some introductory education about lung transplant as a treatment option.

Transplant evaluation

After a referral, your child will go through a full evaluation. This helps the team and your family decide if a transplant is the best option for your child. The evaluation may happen while your child is in the hospital (inpatient) or during outpatient visits.

You and your child will have several different appointments and meet with:

• Transplant doctors and nurses.
• Social workers, psychologists, and child life specialists.
• Physical therapists and dietitians.
• Pharmacists and financial counselors.

Each team member plays a role in the decision to list your child.

Evaluation tests

Your child will also go through extensive tests to determine the health of the lungs and their other organ systems.

This evaluation will include:

• Physical exam
• Blood work – Will be divided into separate labs draws on different days due to the large volume that is required.
• Imaging. include x-rays, CT scans, bone density scans, echocardiograms, or ultrasounds.

The evaluation is also an opportunity for your family to learn about transplantation as an option and whether it is an intervention you desire for your child.

After the evaluation

Once your child completes their evaluation, they are presented to the medical review board. Members of the board are part of a multidisciplinary team that will discuss whether lung transplant would be a reasonable therapy to offer your child.

Your child may be:

• A candidate and ready for placement on the transplant waitlist.
• Not a candidate and not ready for the transplant waitlist.

There could be a variety of reasons your child is not placed on the transplant waitlist, including:

• More testing is required for determination
• Nutritional factors may prevent inclusion on list
• Physical rehab or other physical evaluation required
• Child may have poor outcome with transplant.

In some cases, your child could be considered too healthy to require transplant. When this is the case, the transplant team will continue to follow your child in conjunction with your home team to determine timing of listing.

The waiting period

Once placed on the transplant waitlist, there is no way to determine how long the process will take. Those ready for transplant will often wait several weeks, months, or in some cases, years before there is an organ available.

Your child’s place on the waitlist is determined by the Composite Allocation Score (CAS), which considers a variety of markers to estimate illness severity along with chance for survival posttransplant, as well as other factors such as blood type.

While on the waitlist, many centers require you live near the hospital to facilitate quick admission if donor organs become available. A social worker can help your family identify resources for lodging and other needs during this time.

Be sure to have a hospital bag packed and ready if your child is waiting outside the hospital. While waiting, the transplant team will follow your child closely in clinic or in the hospital. Your child will also be participating in physical therapy and other activities to optimize their transplant candidacy.

Organ Donation

In the United States, the organ procurement and transplantation network (OPTN) is managed by the United Network for Organ Sharing (UNOS). There are different region-specific organ procurement organizations (OPOs) across the country who coordinate the donation process when a donor has been identified.  

About Organ Donation