Living Kidney Donor Conversations: Breaking the Silence – Stage 5 – Full Workup
There are 8 Living Kidney Donor Stages:
- Stage 1 is Idea is Sparked
- Stage 2 is Quiet Thinking
- Stage 3 is Active Exploring
- Stage 4 is Start Workup
If you have come this far in the kidney donation process, you are quite serious about moving forward to give your kidney to someone!
Stage 5 Full Workup
After passing the initial blood and urine testing, you will now need to choose a specific transplant hospital or go to the hospital where your intended recipient is listed on the kidney transplant list. If you don’t have a recipient yet, that is okay. After you are cleared to donate, you will be matched with someone who needs a kidney. There are several ways to donate your kidney and a brief description can be found HERE.
If you haven’t already, contact the transplant center and tell them about your desire to donate your kidney.
Often, the transplant coordinator nurse will call you back, ask you more questions, and determine the next steps to start the full workup. Some tests will need to be done at the transplant center and others may be able to be done closer to your home.
You will not have to pay for any of the testing, surgery, or hospital costs.
But there may be costs related to travel, housing, time off work, or child care. Some states offer a tax deduction for these costs, and, depending on your income level, you may qualify for reimbursement. Payments associated with these costs are legal, even though directly selling or buying a kidney is illegal in the USA.
Check out these resources:
By now, you might be telling others like close family or friends about your plans.
It may be helpful to ask someone to go with you for the testing.
You will go to many testing departments and talk to many people on the donor care team. Having another person with you can help with taking notes, listening, and supporting you throughout the day. It can be stressful and quite exhausting mentally and physically, depending on what is scheduled. Some centers bundle the appointments back to back in two days.
The goal of all of this testing is to determine your current health status.
You must be healthy enough physically to live without a second kidney and mentally prepared for the consequences of donating.
Sometimes testing can reveal health issues you didn’t know you had. Don’t be surprised if, after the initial set of tests, they want even more. Sometimes more testing is needed, depending on your specific results. They might want to take a closer look at a slightly abnormal result to determine if there could be a problem or not. Many donors continue the process, even if they have had additional tests.
The donor team has your best interest in mind as they thoroughly assess your ability to donate. To the best of their ability, they want to be sure you are in good overall health and will live a long life after donating.
The following table will provide you with the basic tests that will be done.
|Basic Living Kidney Donor Testing|
|Complete Blood Count|
|Glucose tolerance test|
|Infections (HIV, Hepatitis, CMV, EBV, syphilis, etc.)|
|Blood and urine||Kidney function|
|Weight||Body mass index|
|24-hour blood pressure monitor||High blood pressure|
|CAT Scan or MRI||Structure of organs and vessels|
|Cancer Screening||As indicated for age and sex|
|Lifestyle assessment||Drug, alcohol, tobacco, exercise, diet|
|Psychosocial Evaluation||Determine free will to donate, suitability, support, concerns, etc.|
During and after the workup, the transplant team will have meetings to discuss whether or not they believe you are a “good” candidate to donate your kidney. This team is made up of the people that were part of your workup: kidney doctor, surgeon, coordinator nurse, social worker, dietician, financial coordinator, living donor advocate, and there could be others that have input regarding your health. Together, they determine if additional testing is needed, if changes are needed, or if you are accepted to donate.
Each transplant center has different policies on what they consider “acceptable” results.
If the team determines your health risk is too high, you may be denied the ability to donate at that center. Some people who were denied at one center went to another transplant center and were accepted. If you do not pass all the testing, you may choose to go to another center for a second opinion.
If changes are recommended before donating such as to stop smoking, lose weight, etc. or you go to another center, this can add additional time in this stage.
Even if the team approves you to donate, you always have the option not to donate.
They will honor and respect your wishes to stop the process up to the time you go into surgery. They do not want you moving forward if you are not ready and willing to donate and they will fully support you and your decision.
This stage is often the one that has many delays. You may be waiting for test results, for the coordinator to call you back, or for the transplant team to meet, and find out what they decided. This can be frustrating and you may become impatient.
You have a right to know how your workup is progressing and what decision or test is next in the process. If you don’t know, you should contact your donor coordinator and find out. There should be clear, direct communication to you about your workup and the donor team’s decisions from the meetings.
Contact your coordinator whenever you feel frustrated or do not know the next step in the workup plan.
Once the team has approved you to donate, you are considered “exportable”. That means you are ready to have your kidney exported to someone else. As long as you have a compatible person ready to receive your kidney, a surgery date can be set.
If for some reason, you do not have surgery, it is important to know that if a year passes after your workup, you may have to repeat some testing. Changes can occur and your team wants to be sure you are still in the best condition to donate.
Stage 5 typically takes months or over a year.
There are groups and organizations that can help you during this process. Here are some that you may want to explore:
- Donor Care Network
- Kidney Donor Conversations
- Living Kidney Donors Support Group
- Living Donor Support Group-Only donors & those considering donation
- National Kidney Donation Organization
- National Kidney Foundation
Want to learn more?
Future posts of the “Living Kidney Donor Conversations: Breaking the Silence” series will provide you with general guidelines of what the journey looks like, even though every individual situation is unique. Get ready for more of this living kidney donor adventure! Stage 6 is next.
All the posts in the Living Kidney Donor Conversations: Breaking the Silence series can be found here:
- Stage 1 – Idea is Sparked
- Stage 2 – Quiet Thinking
- Stage 3 is Active Exploring
- Stage 4 is Start Workup
- Stage 5 Full Workup
- Stage 6 Surgery
- Stage 7 Recovery
- Stage 8 Future Life
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Glenna Frey, APRN-CNS, is a nephrology nurse who donated her kidney in April 2017 to a stranger.
Amanda Frey, M.A., LMFT, LPC, is a Marriage & Family Therapist living with kidney disease.
Together, they co-founded Kidney Donor Conversations in 2018 to provide education about Living Kidney Donation.
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