Transplant and Pulmonary Hypertension
Choosing a Transplant Center
Once you and your primary physician decide it is time for you to go on the lung transplant wait list, you will start working with a transplant team at a transplant center in order to register and prepare for the transplant. A transplant center is a hospital where transplants are performed. Every transplant center in the U.S. is a member of the Organ Procurement and Transplant Network and must meet specific safety requirements.
Your transplant team will include all or some of the following:
- Your transplant coordinator will oversee the entire transplant process. He or she will oversee your evaluation, treatment and follow-up care. The transplant coordinator will be available to address any questions you may have before, during or after the transplant.
- The transplant surgeon will perform the transplant surgery and has received special training to do transplants.
- The transplant physician is a doctor at the transplant center who will manage your medical care, tests and medications. While the transplant physician does not perform the surgery, he or she will be responsible for your care before and after the transplant.
- The anesthesiologist is the doctor who will put you to sleep during surgery and help manage any post-operative pain you experience.
- The transplant unit staff nurses will help care for you both before and after the transplant. They will also provide education about your tests, medications and life after the transplant surgery.
- A dietician will make an assessment of your nutritional needs and recommend nutritional guidelines if you need to gain or lose weight prior to transplant.
- A physical therapist will evaluate your exercise capacity and may recommend exercises for you to do to increase your strength and endurance prior to surgery.
- A financial coordinator will work with you, along with other members of the transplant team, insurance companies and hospital administration to coordinate and clarify the financial aspects of your care before, during and after your transplant. The financial coordinator will help you determine how you will pay for your transplant.
- A social worker will help you and your family cope with the strain that listing and undergoing transplant surgery can put on you and your loved ones.
- Your family doctor, specialist or primary care physician will work with the staff at the transplant center to coordinate medical care.
When considering transplant centers, be sure that you look for a center with an experienced team, rather than a single star surgeon. The quality of care you receive from all of the individuals listed above will be critical to your transplant success. A list of Medicare-approved centers is available online. Medicare will only cover transplants that take place at one of these pre-approved centers. You can also use the Scientific Registry of Transplant Recipients to compare centers.
Talk with other people who have had transplants at the center(s) you are considering and network with people who received transplants at other centers. PHA’s Transplant email group is a private forum where you can ask questions of transplant recipients and talk with other patients considering transplant. The Second Wind Transplant Association’s website also has a message board that may be helpful for such networking.
Finally, don’t be afraid to ask questions! Talk with the transplant team at the center(s) you are considering and ask them the following questions:
- How many lung transplants have been performed at this center?
- How many PH patients have been transplanted to date at this center, and how many this year?
- What type of transplant is typically done for my diagnosis?
- How many surgeons perform this kind of operation at this center?
- Approximately how many lung transplants does a particular surgeon perform each year?
- What is the patient survival rate?
- How long is the average wait for a lung transplant at this center?
- How many patients are on the local waiting list?
- How many other patients on the local waiting list share my blood type?
- How many patients have died while waiting?
- Do I need to move closer to the transplant hospital after I am put on the waiting list? If so, do you provide housing before the transplant, and how much will it cost?
- If I do not have to live close to the transplant center, how will I get there when I get the call?
- How quickly do I have to be at the hospital after a donor is found?
- How much will my transplant cost? Is there someone on the transplant team I can speak to about financing the transplant?
- How long is the average hospital stay?
- Does the center provide housing after the transplant operation? If so, how much will it cost?
- Does the center have a support group? If not, is there one in this area?
- What is the nurse-to-patient ratio during the recovery process in the ICU and in the regular unit?
- How familiar is your staff with Flolan and Remodulin during the transplant process? (If applicable)