My name is Ronald (Ron) Taubman and I received a kidney pancreas transplant at a Southern California transplant center on July 3, 2001. My transplanted kidney failed on March 15, 2009 and I am back on dialysis. My transplanted pancreas is functioning quite well with a HA1C level of 5.4 to 5.9 on a consistent basis.
My basic concern is that the longer I remain on dialysis, the higher the expectancy that my pancreas will also fail. I live in Los Angeles, CA where the average wait time for a standard criteria kidney runs between 5 to 10 years. Being a Type 1 Diabetic for 46 years (before receiving my new kidney/pancreas) my life expectancy on dialysis is between 3 to 5 years, if I am lucky. I need to find a kidney in the shortest amount of time and yet follow and observe the rules and regulations established by the United Network of Organ Sharing (UNOS), therefore, I have decided to “multi-list.”
Be aware that it is against federal law to buy or sell an organ in the United States and is punishable by severe fines and jail time. So unless you decide to go outside of the United States and take the risks in some other country of buying an organ, you had best learn the “ins and outs” that UNOS allows by Multiple Listing.
Multiple Listing as defined by UNOS is as follows: “Multiple listing involves listing at two or more transplant centers. Since candidates at centers local to the donor hospital are usually considered ahead of those who are more distant, multiple listing may increase your chances of receiving a local organ offer”.***
*** Source: UNOS pamphlet titled “Talking about Transplantation; Question and Answers for Transplant Candidates about Multiple Listing and Waiting Time Transfer”. For additional information on multiple listing and copies of the UNOS pamphlet reference above, visit www.unos.org. I strongly suggest that any organ candidate that is considering multiple listing first obtain the above referenced UNOS pamphlet as a needed primer on this subject.
My first objective was to get listed by a transplant center so that I could be placed on the UNOS list. The readers of this article should get used to constant delays in processing their request to be listed, especially in large urban areas. The people working at the transplant centers are wonderful and dedicated individuals, but the reality is that there are far more transplant applicants than the available staff can process in a timely manner.
I would suggest that a good starting point would be to visit the UNOS web site at www.unos.org and look up the wait time statistics for transplant centers out of your region. There are 11 separate Regions in the United States. Decide which transplant center, outside your region, would best meet your needs, considering wait time and location.
Upon identifying these transplant centers, do the following:
- Inform your nephrologist that you will be multi-listing at out of region transplant centers and that he will have to complete a separate referral form for each center that will be sent or faxed to his attention.
- Call each transplant center and ask to speak to the individual in charge of new transplant requests. Remember to write down their name and contact number. Give them your basic information and then ask questions, such as: will they accept out of region candidates; how many visits comprise their evaluation process (usually three separate visits); and what type of insurance coverage you will need to cover the medical expenses. They will most likely ask you some additional questions to pre-screen you. Be absolutely honest in responding to their questions as it will save you time and money later if it is determined that you are not a viable candidate for their transplant program.
- Realize that multi-listing will cost you money. You will have to pay for your own travel, living, food and transportation costs. Remember, after you receive your transplant, you will have to reside close to the transplant center for at least 4 to 6 weeks, or even longer. Most transplant centers require, at the first evaluation, that you also bring the person who will be your caregiver after the transplant. Most insurance companies (except HMO) will pay for your out of region pre-transplant testing, as it will save them money later on when you stop dialysis (approximate cost for dialysis per year is $80,000.00).
- You will have to prove to the transplant social worker that you have the financial ability to pay for your travel and living expenses and also the financial ability to pay for your medications. The good news is that Medicare along with any supplemental insurance is one of the best types of coverage you can have and is mostly acceptable around the country. If all you have is Medicare, then you may be liable for the deductibles that can become enormous. Therefore, if you cannot afford to travel to another region for a transplant, do not waste your or the transplant center staff’s time.
Be prepared for numerous forms to be completed both before your first evaluation appointment and while at the center. A word of advice: if you decide to multi-list, start compiling your medical records, i.e., hospital records; physician records; and any immunization records. All of the transplant centers will require a dental clearance, therefore, if you have not seen a dentist in 6 months, you should go and determine if there are any problems and get them fixed. Once you have all of these records, make copies of them, as it is quite a job to compile all of these records.
This article is just an overview of the process of being multi-listed. You should be aware that the UNOS Executive Committee is going to review this process, as to its propriety, sometime in the first quarter of 2010
About the Author
Ron received a kidney pancreas transplant recipient at UCLA on 7-3-01. He is a former Vice President of TRIO National; Immediate Past President of TRIO Ventura County West Valley Chapter; Region 5 Representative on the OPTN/UNOS Pancreas Committee from July 30, 2007 to July 30, 2009 and Donate Life Ambassador. Ron’s kidney failed on March 15, 2009 and he is back on Hemo-dialysis, three days a week. Ron has multi-listed for an extended criteria kidney at two medical centers outside of California.
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