1. Living with Kidney Disease & Transplantation

2. How Do I Get on the Transplant List?
Doug Penrod, RN
Senior Transplant Nurse Coordinator
Outreach Liaison

3. I have been told I need may benefit from a kidney transplant
I have been told I need may benefit from a kidney transplant. What’s my first step?

4. Do Your Homework!!
Check with your insurance company about who they are contracted with
Ask your kidney doctor if he/she have a recommendation
Picking a transplant center is a LONG term relationship
Go on-line, check out the different transplant centers.
Utilize other websites: United Network for Organ Sharing(UNOS), Organ Procurement Transplant Network (OPTN), Scientific Registry of Transplant Recipients(SRTR)
Talk to other patients who are listed or were transplanted at various centers

5. Bottom Line - YOU need to make the first move
Call and make an initial appointment. Some centers want you to fax or mail a referral form to them first
Plan on spending a good portion of a day at the center and ask if you can bring food and drink with you
There will be an education meeting to inform you about all benefits/risks of transplant, possibly in a group setting.
You will them meet one-on-one with:
Nephrologist, Transplant surgeon, nurse, social worker,
dietitian, PharmD, financial coordinator
They will also probably draw a lot of blood – a lot!

6. My first visit: Blood Draw (ABO, HLA typing)
Orders for other test to complete your evaluation
Tests will vary slightly from center to center and will be based on standards of care and those necessary to clear you medically for a transplant. These test should all be covered by your insurance and some insurance companies have contracts with the transplant center for them to do the entire evaluation at their facility. Most want you to do it at your primary hoapital under your insurance plan.

7. My evaluation is complete – now what?
Your evaluation will be reviewed by a Kidney Transplant Selection Committee
They will decide if you are good candidate for placing on the waiting list and/or receiving a live donor kidney transplant
At that time, the committee may decide they need to do another test (Oh great!) Or they approve your for listing and transplant. Or they do NOT approve you.
You are not officially on the list until you receive a letter from the transplant center stating the date you were listed with the United Network for Organ Sharing (UNOS)

8. They didn’t approve me!!!!!
This is most disappointing and you are probably wasting your time trying argue this with the center. But if you are committed, PLEASE SEEK A SECOND OPINION! All transplant centers have somewhat different criteria. An example is weight. Your Body Mass Index (BMI) may be just fine for one center, but too high for another. Age is also a determining factor, so again, seek a second opinion.

9. You received your listing letter
Now starts the wait, if you do not have a living donor. Waiting time varies through the U.S. You might want to check to see if a transplant center in another organ bank area has a shorter waiting time in your blood group. Your transplant center is required to inform you of multiple listing at more than one center and how it works.
If you move on this quickly, you may be able to eliminate any additional testing by supplying your medical records from the first evaluation. You will still have to visit and go through a day long program at the second center.

10. Stay healthy while waiting
Compliance with your dialysis is mandatory.
DO NOT miss your treatments
DO NOT cut short your treatments
Take your medications as ordered
Follow your diet and watch your fluid intake as ordered by your nephrologist
Transplant centers DO NOT like patients who are non- compliant with dialysis. It makes them nervous about transplanting you. DON’T make us nervous!

11. Things to notify your transplant center of:
If you move and change address and/or phone number
If you change dialysis centers and/or nephrologist
If you change INSURANCE
If you have a blood transfusion
If you are hospitalized for anything other than vascular access revision or placement
If you are going on vacation, honeymoon, your daughter’s wedding, etc. It may be important enough that you do not want to be bothered with a call regarding a possible kidney. Let us know about this and we can pass on offers during this time and also advise if you will even get an offer.

12. Re-evaluation
At sometime, center dependent, you will be re-evaluated before being transplanted and go through the same type of education session, etc. as when you first went on the list.
WHY? Because things can change over time: your health, transplant center criteria, medications, etc. A good outcome for your you and your transplant is of the upmost importance to the center. They want to do what is best for you and offers the best chance for a successful outcome. You benefit!
Unfortunately, your condition may have deteriorated, over time, to the point that you are no longer candidate.

13. Is there some way to eliminate the wait and that I may not be a candidate later
HAVE A LIVING DONOR TRANSPLANT!!
A few months wait, not years, best results both short term and long term
Donor does not have to be related, just medically cleared as a donor. They do not even have to be compatible with blood type or DNA, if both you and donor agree to a paired kidney donation.
If I have time now, I’ll talk more. Otherwise, thank you and
QUESTIONS?

14. Our local organ procurement organization is Gift of Hope, which is responsible for the coordination of organ donation in the northern three-quarters of Illinois and for Northwest Indiana
There is no benefit to listing at multiple centers within the Gift of Hope region because all donors will be offered to all centers