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
- Stage 5 Full Workup
- Stage 6 Surgery
- Stage 7 Recovery
Stage 8 Future Life
We have come to the last stage in this series “Living Kidney Donor Conversations: Breaking the Silence“. Stage 8 is Future Life and involves living the rest of your life with one kidney.
For most kidney donors, their life is not much different after donating.
Most donors go back to their previous work, activities, lifestyle, etc. without any health changes. Many describe donation as a ‘non-event”. It is often a small aspect of life – testing, surgery, recovery, then feeling normal – that you may easily forget that you only have one kidney.
Contact your donor team if you think you have a problem that is related to donating your kidney. Any treatment for complications directly related to donating should be covered by the recipient’s insurance.
Taking care of your body, mind, and spirit can help you have a long life with one kidney.
Follow Up Visits after Kidney Donation Surgery
Typically, follow-up visits with the donor team are scheduled at 6 weeks, 6 months, 1 year, and 2 years. They want to know that you are healing and will address any concerns you might have. Blood will be taken to check your kidney function and general physical recovery. One blood test, creatinine, is an indication of kidney function. It is common to have a higher creatinine than “normal” after donating. This is expected. Slowly, over time, this may return to a true normal level again. For others, it may remain at a slightly higher value as their new baseline without problems. It is best to talk to your kidney doctor (nephrologist) for any specific questions related to your kidney function after donating. Regular health checkups and monitoring of your kidney function with your local health care provider are encouraged.
There is ongoing research being done to monitor and track the outcomes of kidney donors.
A slight increase in problems after donating seems to be found in some very specific areas. About 22% of donors have minor surgical complications. One example is that some donors notice physical sensations related to the surgery that often fade with time.
Very few (5%) will have major complications and will need close medical care afterward. A small subgroup of donors has a slightly higher risk of high blood pressure and diabetes, especially for African Americans and obese donors. Pre-eclampsia has also been found to be slightly higher in kidney donors. This is a condition in pregnant women with high blood pressure, sometimes with swelling and protein in their urine. Any female who gets pregnant after donating should have close medical follow up during pregnancy. Most kidney donors have normal pregnancies afterward without problems.
The risk of having kidney failure in the future is also slightly higher when matched with the same age of healthy non-donors. The risk of kidney disease needing dialysis or kidney transplant 15 years after donating is about 0.04% and the lifetime risk is about 0.30%. You can determine your own personal risk by entering your specific information (age, gender, blood pressure, weight, etc.) by going to the ESRD Risk Tool.
The extensive kidney donor testing before surgery helps determine who should have the lowest risk of donating. But the donor team cannot predict exactly what will happen afterward with every donor, even though they try their best.
Regular Health Check-Ups after Kidney Donation
Regular health checkups and monitoring of your kidney function (creatinine) with your local health care provider are encouraged. Many donors want to take extra care to stay healthy also. For some, this means being aware of eating healthier food and resuming an exercise routine.
Counseling may be beneficial to cope with any changes and the stress of daily life.
There may be added worries if the person who received your kidney has medical problems afterward or dies. Or the kidney you donated could stop working and they might need to go back on dialysis. It is normal to grieve the loss of your kidney either from your body or from someone else’s. You might also have concerns because your body no longer looks the same with the incisions. Leaning on people to support you at this time and talking about how you feel is very important.
Covid-19 after Living Kidney Donation.
Many donors have concerns about the risk of getting Covid-19 with one kidney. Currently, the risk of getting Covid-19 for kidney donors is the same as for the general population and the Covid vaccination is recommended. Talk to your donor team about the vaccine if you have any questions or concerns.
Contact with Recipient after Kidney Donation
Some kidney donors have a strong relationship with their recipient and others don’t have any, or very minimal, contact. Every situation is different and the donor and recipient get to choose how much contact they want to have. For example, often those who have donated to someone they have known for years (family or friend) frequently have a close relationship that continues. Those who have donated to a stranger may never meet or communicate with their recipient.
If you do not personally know your recipient, you can send letters through your donor coordinator. Both donor and recipient must agree to want to have some type of communication and share information. If one person chooses not to have any contact, that will be honored by the transplant team and information will not be exchanged.
Some donors like to talk about their donation story and others only discuss donating if they are asked. There are many donors who want to increase awareness of living kidney donation and willingly and openly discuss their story whenever possible.
Most living kidney donors have an improved quality of life and state they would donate again if they could.
Kidney donors have a major impact on the life of recipients and their families. Sharing your donation story may help even more people. The inspiration to donate often comes from hearing about a living donor story. This brings us back to Stage 1 – Idea is Sparked. Someone hears the story of a living donor and is inspired to find out more. And the living donor cycle continues. One person at a time.
How can you help Break the Culture of Silence around Living Kidney Donation?
There are still about 95,000 people waiting for a kidney transplant. You can be a part of the cause to help. Will you talk about the importance of living kidney donation? Will you consider donating your kidney? Will you start the conversation?
Being a living kidney donor can help one more person have a better life.
Want to learn more?
Previous posts in the “Living Kidney Donor Conversations: Breaking the Silence” series can be found here:
- 8 Living Kidney Donor Stages – Introduction
- Stage 1 – Idea is Sparked
- Stage 2 – Quiet Thinking
- Stage 3 – Active Exploring
- Stage 4 – Start Workup
- Stage 5 – Full Workup
- Stage 6 – Surgery
- Stage 7 – Recovery
Discover More about Living Kidney Donation at MyKDC.org.
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.