Listing Steps

Listing at a transplant center is a multi-step process.  You should begin researching where you want to list as soon as you know a transplant is in your future.

1. Select Transplant Center (TC) or Centers (TCs) where you want to apply.  Factors to consider include:
   * Performance Stats: OPTN and the Scientific Registry of Transplant Recipients
   *  Travel distances from your home to the TC, air carriers, and schedules.
   *  TC with your health insurance plan.
   *  Social supports and housing while you are at the TC
2. As you get close to GFR of 20%, begin having the screening tests done, keep hard copy and electronic copies of the reports. You will need these as part of your application process. The TC needs to determine that you are healthy enough for transplant surgery.
3. Keep copies of your labs to provide proof of 20% sGFR proof to the TCs.
4. Make phone calls to the your selected centers to begin the application process. Ask if they can send to you via email.  It will be much easier and faster to communicate via email rather than snail mail. Some will send applications before you are at 20% GFR, others will not.
5. While some TCs will require you to have a referral from your doctor to begin, most will start the process without this referral.  However, the TC will want to see progress notes from the physician who follows you.
6. If you don’t own a fax machine, consider purchasing one or setting up an e-fax account.  For doctors and hospitals, faxes are the primary means of communication and having ready access to one will greatly simplify the process.
7. Complete the application, make a copy and then send to the transplant center.
8. Make a copy and scan if possible of your insurance card. This will be requested as part of your application.
9. Keep track of the dates on which you send your applications.
10. Begin following up about 2 weeks after you send the application package.
11. If they think you are a candidate for their program, they will schedule you for an evaluation appointment.  If they do not, they will notify you.
12. Just because one program does not accept you, does not mean that another will not. Transplant centers have different levels of complexity they will assume with their patients, just as regular hospitals do.
13. At your evaluation meeting, you will meet with a nephrologist, surgeon, pre-transplant coordinator, social worker and financial advisor.  The center will be assessing not only your medical fitness for transplant, but you ability to comply with the lifetime post transplant medication regime.  Be sure to ask what their decision process is and the time frame. Make note of this.
14. Check in with the TC about the time they will be making a decision and ask if any additional information is needed. Continue to check in with them periodically until you are notified of a decision.
15. Be ready at any time for a call once you are listed. A very good match can come along at any moment.
16. Make a spreadsheet with the flight schedules by day of week and keep this handy, as the TC, when they call will ask you how soon can you get there.
17. Make a list of the questions you want to ask when the TC calls with an offer.  When you get that call, you may be nervous and forget what you want to ask.
18. Keep a list handy of what you will take with you.  Remember you will have abdominal surgery, so pack with that in mind.  Loose fitting clothing is helpful to have.
19. Some people like to have a complete “go bag” packed.  I did not not, but did keep a set of Go toiletries at the ready.
20. Be patient, but be ready.