Aligning Yourself with a Transplant Hospital and Getting on the Transplant Waiting List
Once your doctor or nephrologist tells you that your kidney functions have declined to the point where you qualify for the kidney transplant waiting list, the following provides you with a roadmap of the process:
- Learn as much as possible about the hospitals in your area and choose the one that best meets your needs and will be covered by your insurance company. Some insurance carriers require you to receive your transplant at specific hospitals in order for the procedure to be covered. You should make a list of qualities in the hospital and staff that are important to you. Review the UNOS web site and their statistics on the transplant hospitals you are evaluating.
- Make an appointment to visit the hospital. During your visit, the hospital's transplant team will evaluate your medical history, current condition of health, and other factors to determine if you are a good candidate and qualify for a transplant. If living donation is of interest, express your desire to the staff. Although there are national standards, each hospital has its own criteria for accepting a patient for a living kidney transplant.
- During the evaluation, learn as much as possible about that hospital and its transplant team.
- If you are told that the hospital will not place you on the waiting list, or that you do not qualify for a living kidney transplant, review the reasons why and see if you could make lifestyle changes to qualify you later. You always have the option to meet with other hospitals.
Partial list of questions to ask when visiting a transplant hospital: (Questions should be for you and your donor)
- Will you be seeing the same doctors for your visits, pre and post transplant?
- How many surgeons perform kidney transplants and will you know which surgeon will be doing the surgery?
- How long will you be in the hospital
- What are the surgical procedures, ask for details
- Can you take a tour of the hospital rooms where you will be staying?
- Are there any visitor restrictions?
- What are their follow up requirements and how often will you be required to go to the hospital following your transplant and how much time will these follow up visits typically require?
- How many of your types of procedures have the surgeons performed? (Don’t be afraid to ask your surgeon how long they’ve been doing these procedures and their success rates)
- What is their policy on evaluating potential donors? i.e. will they evaluate more than one donor at a time?
- Will they counsel potential donors if they need to make some lifestyle changes to qualify to donate? (i.e. lose weight, lower blood pressure, etc.)
- Do they have a Paired Kidney or a Domino Paired Kidney Exchange program? Do they work with other hospitals in the area or organizations that have national programs?
- How many pairs do they have registered at their hospital? (The more people registered the more likely they will be to find a compatible Pair.)
- Do they do blood donor incompatible transplants, or if you are sensitized, what programs do they have to desensitize you?
- Is there someone that can assist you with any financial issues you may have?
- If you are using Medicare to pay for the transplant, what kind of help can they provide to support your effort to continue your prescription drugs after 3 years?
- Who will be responsible for your follow-up medical care after your transplant has taken place, and for how long will you continue to come to the hospital for follow up?
- How, and for how long, will they follow up with your donor and what might not be covered under your insurance should the donor have any medical complications?
- What is their policy on the use of steroids during the procedure and as part of your life-long medication plan?
- Are there opportunities to participate in new drug trials?
How will You know that You are listed on the kidney transplant waiting list?
Each hospital has its own criteria for listing patients. However, UNOS has developed listing guidelines. UNOS does not send patients written confirmation of their placement on the waiting list. Instead, patients should find out if they have been placed on the waiting list through their transplant hospital. If you have questions about your status on the list, you should ask the team at your transplant hospital.