I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on October 07, 2010, 12:04:22 AM
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This info is from the National Kidney Registry's website under the section:
"I'm in need of a kidney. I do not have a donor."
Welcome! Based on your situation, you need a kidney and may not have a living donor. You have two basic options: (1) get a deceased donor transplant, or (2) find a living donor by conducting a living donor search. We suggest you do both.
Deceased Donor Transplant
Although the wait time for deceased donor kidneys is reported to be long and getting longer, there are transplant centers in the United States where median wait times are less than a third of the national average. If you are listed at one of these transplant centers that has a short wait list, you will significantly increase your odds of getting a deceased donor kidney quickly. Keep in mind that you can be listed at more than one transplant center. Also, some people list at transplant centers that are hundreds and even thousands of miles from their homes in an effort to get the fastest and best possible outcome.
For wait time information at transplant centers, go to the website of the Scientific Registry of Transplant Recipients www.ustransplant.org/csr/current/csrDefault.aspx (http://www.ustransplant.org/csr/current/csrDefault.aspx). On this site, click on the state you want, click on “Kidney Centers,” and then select the transplant center you want to view. At the top of this page, use the drop-down menu to select report 06 “Time to Transplant, Waitlist Patients.” This report will show you the median time to transplant for the selected center compared against that region and the entire United States. This is important information to know when you are deciding where to list.
Another good source of wait list information is the Organ Procurement and Transplantation Network www.optn.org/latestData/step2.asp. Sometimes you can find transplant centers that are located less than an hour’s driving distance apart where one of the centers has a significantly shorter wait time than the other.
Living Donor Transplant
In addition to pursuing a deceased donor transplant, you may also want to conduct a living donor search. Below are some helpful tips that will improve your donor search results.
Create a team for the donor search and transplant process. This team should include an administrator, a caregiver, and one or more donor recruiters. In many cases, one person may have more than one role. For example, a spouse may be the administrator and the caregiver while the parents are the recruiters. It is best if the recipient focuses on his/her mental and physical health prior to transplant and does not try to take on these roles unless there is no one to fill the roles. The administrator will manage all the insurance, medical records, and other paperwork, which must be well organized. The caregiver will oversee the recipient’s medical needs. The recruiter(s) will focus on finding donors.
Choose your recruiters thoughtfully. The best recruiters will generally be people close to the recipient who cannot donate because of health reasons or incompatibility. If they are incompatible, it is helpful if they are willing to donate through a kidney exchange.
Have your recruiters start recruiting immediately. Keep a list of potential donors. Focus on the potential donors who are healthy, committed, and may be willing to enter into a paired exchange.
Do not convince yourself or tell anyone that you have a donor during the search process. Until the surgery actually takes place, you only have potential donors. There are many reasons that potential donors never become actual donors – medical and otherwise. It may turn out that even though you have 10 potential donors, none of them can donate.
Do not stop recruiting even if you have several potential donors and do not stop recruiting until your potential donor has passed the final cross match test and surgery is less than a week away.
If you are a recruiter, don’t be shy about asking people if they would consider donating. Start with friends and family (siblings have the best chance of being great matches) and build from there. Whenever you ask someone if they would consider donating, regardless of their willingness to donate, follow up by asking if they know of anyone who would be willing to donate. Seek out brave people. If someone is or was in a courageous profession, such as law enforcement, the military, or fire fighting, they are more likely to consider donating. These people also have many brave friends who may be willing to donate even though they do not know the recipient.
It is generally best not to initially ask if someone will donate – people need time to do the research and understand what it means to donate. Give potential donors the Registry website as a starting point for this research. Instead of initially asking if someone will donate, ask the potential donor if they would consider taking a blood test to determine if they can donate. Some people say they will consider donating but never follow through – expect this. Use the blood test as a screen to determine if someone is serious about donating.
Ideally, every potential donor who is willing to donate directly would also be willing to donate through an exchange also. This is not always the case. Sometimes a donor will be willing to donate directly but not through a paired exchange. You need to determine this at the appropriate time in the recruiting process.
Donors who are willing to enter into a kidney exchange are powerful because they do not need to be blood compatible or pass a cross match test with you. These donors are extraordinary because they can expose the recipient to hundreds of potential donors that are in the many exchange programs in the United States. The more donors you can be exposed to through an exchange, the greater the opportunity for an excellent match.
http://kidneyregistry.org/no_donor.php