My Story

In my family, there are five people in my generation who have had kidney transplants due to a genetic problem.  All those in the previous generation who developed End Stage Renal Disease died.  I first learned I was a carrier of the gene when I was in my teens, but did not learn until my 50s in 2004 that I would need a transplant.  From that point on, I began to research the process, so that when I became eligible for the transplant list, I could get listed as quickly as possible.  My kidney function declined to a Glomeruler Filtration Rate (GFR) of 20 in the fall of 2009 that made me eligible for listing.

I knew  I would pursue multiple listing or listing at a number of different transplant hospitals since the waiting time my home  city, New York,  was  5-7 years for my blood type.   Multiple listing for organ transplant is a right everyone has, but few people know about, and fewer people know how to accomplish.   I want to share with others how I did what I did, so they can do it, too.

As I was nearing a GFR of 20, I began to research the options for me in earnest.  I became familiar with UNOS, OPTN and the Scientific Registry.  I developed my list of potential transplant centers with shorter waiting times by researching the national transplant data provided by  UNOS-OPTN (www.optn.org).  In addition to having a short waiting time, I wanted the center to have done at least 100 kidney transplants a year and to have good statistics for patient survival and graft (transplanted kidney) survival. Based on this research, I developed a short list of about 8 transplant centers. I then called them to see if they accepted patients from my area.  Travel time and airline service to get to a transplant center from your location is an important factor. While some centers in the Northwest had great numbers for me, flying time to get there was too long and those centers did not accept patients from the East Coast. Part of your review process for transplant centers should be to confirm that both the facility and the physicians accept your insurance.  Most centers will not schedule an evaluation appointment until they have confirmed your insurance.

Once I had my short list, now of 5 centers, I researched their websites to determine what screening tests were required. These vary based on center, one’s age and personal medical history.  However, there is a core set which is fairly standard. Click here to see the standard set. You should get these tests done as you approach a 20 GR, keeping in mind that the transplant centers will ask them to be repeated annually.  Keep keep copies of all the records, ideally in electronic format.  You will need to provide these to the transplant centers which are evaluating you for admission into their program.

Once  I reached a GFR of 20, I self-referred myself to the transplant center in New York City I had selected.  It’s important to have list a a transplant center in your home city, even if you plan to pursue multiple listing, because you will need to be closely followed for 6-12 months once you have your transplant.  The transplant center emailed me the application forms which  I completed and returned to them, along with copies of the tests they requested and my most recent labs. (Most centers, but not all will accept faxes or scanned files via email.)

Once I sent in the information, my medical history and insurance coverage was reviewed and then I was scheduled for my evaluation.  This is typically a day long appointment and includes an education class about the transplant process, review by the surgeon and a nephrologist, meeting with the financial coordinator and social worker.  Shortly after this appointment I was notified that I had been listed on the National Transplant Registry.  This date was my “place in line.”

After having been listed in New York, I began the process with the other centers I had selected, beginning with a phone call and following up by sending the application information and medical records.  Each center has its own waiting list and one’s position on that list is determined by when you are screened and approved at that center.  However, UNOS allows each person a one-time transfer of waiting time from one center to another.  This is what I did.  I transferred my waiting time from New York to the University of Kansas, where I ultimately received my transplant.

I am delighted to report that I am now 14 months post transplant and all is going very well.  I was blessed to receive the gift of life from my donor, who had made her wishes known to her family, and to her family who followed her wishes.