The good news is that you now have multiple centers that offer successful transplant programs. There are many factors that can/should be taken into consideration when choosing a center knowing that all centers are created equal; for example, some specialize in higher risk patients, some will accept you into a program with a certain level of support and others won’t, etc. If you have the time and resources, you can consider making on-site visits.
We considered the three centers that were closest in proximity to our hometown, and known by our CF team. The three that we considered were:
Our insurance dictated that we choose Columbia in NYC. At first, we resisted this choice due to high costs of NYC travel and living. So, we visited the Columbia transplant center. We took our children. We met some of the transplant staff on a casual basis in the hallways. We saw the neighborhood, the setting. We experienced the commute between the available lodging and the hospital. We were admittedly a bit intimidated but, in retrospect, we knew we were absolutely in the right place. Keep in mind that sometimes evaluating alternate centers is an option. If you have the time, energy and resources, you many want to research and visit multiple centers to find the one that’s the right fit for you.
Here are some factors we considered in the decision-making process:
Home CF team’s familiarity with the transplant center and its staff. The transplant team manages the surgery and follow up, but the local CF team is responsible for the rest of your care. Cooperation and coordination between your local CF team and the transplant team is critical to making sure there are no conflicts or gaps in the treatments and medications.
Insurance Coverage. Our case manager helped narrow the centers we should consider. She advised us about which ones were covered by our policy as well as the implications for centers that were in-network and center that were out-of-network. She also told us of a help-line for support.
Comfort with the Center. Because of the intensity and frequency of follow-up care after transplant, we needed to have a high degree of comfort with the center we chose in terms of accessibility, likeability of staff and confidence in the doctors.
Statistics. Here is a link that lists the US hospitals that offer lung transplants and includes links to reports of their outcomes: http://www.srtr.org/csr/current/Centers/TransplantCenters.aspx?organcode=LU