Supporting Patients Through the Donation Process

ANC Team

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October 14, 2024

Supporting Patients Through the Donation Process

When someone you love is getting a kidney transplant or donating a kidney, family and friends can make the process easier by going to appointments, helping at home during recovery, handling practical tasks and simply listening. The most helpful support also respects that donating is a personal choice, and that both the donor and the recipient may have mixed feelings along the way.

Key Takeaways

Both the recipient and a living donor go through a careful evaluation at a transplant center, and a loved one can come along to take notes.
Most living donors stay in the hospital 1 to 2 nights and make a full recovery in about 4 to 6 weeks.
Transplant recipients take anti-rejection medicines every day for as long as the new kidney works, and they need frequent checkups at first.
No one should be pressured to donate, and a potential donor can change their mind at any time.
Free support is available through the National Kidney Foundation, including peer mentors for patients, donors and care partners.

What Happens During the Transplant Evaluation?

The person who needs a kidney starts with an evaluation at a transplant center, which usually takes 1 to 2 full days. They have medical tests, meet the transplant team and talk about their emotional health and the support they have at home. The National Kidney Foundation (NKF) suggests bringing a family member or friend for support and to help remember everything the team covers. For what follows approval, see the process of the kidney transplant waiting list.

A living donor contacts the transplant center where the recipient is listed. Donors must be at least 18, some centers require 21 or older, and conditions such as uncontrolled high blood pressure, diabetes or cancer can rule someone out. The donor evaluation usually takes 1 to 2 days and includes blood and urine tests and imaging, plus meetings with a nurse coordinator, nephrologist, surgeon, dietitian, social worker and an Independent Living Donor Advocate, whose job is to make sure the donor is not under pressure. From start to approval often takes a few months to up to a year.

How Can You Support Someone Who Is Thinking About Donating?

Donating a kidney is a very personal decision. A potential donor can stop at any point, even after being approved and up to the day of surgery, and their conversations with the transplant team are kept confidential. Never push anyone toward donating, and make it clear that saying no is fine.

You can help by listening and by thinking through practical questions together:

Who will be their care partners? Most transplant centers ask donors to name 2.
Who will look after their children, an adult they care for, or their pets?
How will they handle time off work and costs that insurance does not cover?

If a donor is not a match for the person they hoped to help, the team may suggest a paired exchange, in which two donor and recipient pairs swap. You can also read how living and deceased donor transplants differ.

What Is Recovery Like for a Living Donor?

Donor surgery is usually laparoscopic or robotic, using small cuts in the belly area. Most donors go home after 1 to 2 nights, though someone who lives far away may be asked to stay near the hospital for about a week. In the first weeks they may feel bloated, constipated or tired, with itching or pain around the cuts and some shoulder pain from the gas used during surgery. Most make a full recovery in 4 to 6 weeks.

Donors may not be able to drive for up to 2 weeks and should not lift anything heavier than a jug of milk for about 6 weeks, so care partners can help with rides, meals, laundry, child or pet care, and any lifting.

What Is Recovery Like for the Transplant Recipient?

The transplant operation takes about 3 to 4 hours, and the new kidney is placed in the lower belly. Recipients usually stay in the hospital several days. The new kidney may work right away or take up to a few weeks, and dialysis continues until it does. Early on there are many appointments and blood tests, and full recovery takes about 6 months.

Recipients must take anti-rejection medicines every day, exactly as prescribed, for as long as the new kidney works. These medicines weaken the immune system, so infections are a bigger risk. Ways family can help:

Help set up a pill organizer or reminders, and drive to lab and clinic visits.
Wash your hands often, and stay away when you are sick.
Cook with food safety in mind. Recipients are usually told to avoid raw or undercooked meat, fish and eggs, unpasteurized dairy, unwashed produce and grapefruit.

How Can You Help With the Emotional Side?

Donors often feel excited before surgery and then a little “down” during recovery. This is common and usually passes within the first few weeks; regular calls or visits, quiet hobbies and short walks, once the team approves, can help. Overall, 90 to 95% of donors say they would donate again.

Recipients may feel anxious, low or guilty, including worry about their donor’s health. Listen, and encourage them to tell the transplant social worker, since anti-rejection medicines can also cause mood changes. Caregivers need support too: share tasks among family and keep up some of your own interests.

What Practical and Financial Help Is Available?

The recipient’s health insurance covers a donor’s medical costs related to donation, including the evaluation, surgery, hospital stay and follow-up visits. It usually does not cover lost wages, travel, lodging, meals or dependent care. The National Living Donor Assistance Center can help with travel and meals for the donor and a care partner, and with dependent care and lost wages; the transplant team checks eligibility and applies.

For time off, the federal Family and Medical Leave Act (FMLA) gives eligible employees up to 12 weeks of unpaid, job-protected leave, so ask human resources whether the donor qualifies. Federal employees get 30 days of paid leave for organ donation, and some states have their own protections. Under the Affordable Care Act, health insurers cannot refuse coverage or charge more because someone donated a kidney.

Where Can Families Find Support?

The National Kidney Foundation offers several free options:

NKF Cares: a help line for patients, family members and care partners at 855-653-2273, Monday to Friday, 9 AM to 7 PM Eastern.
NKF PEERS: phone mentoring with trained mentors who have been a kidney patient, living donor or care partner themselves.
Online communities: free, anonymous groups, including ones for transplant recipients and kidney donors.

Ask the transplant center about its support groups, lodging and social work services. For the longer road of living with kidney disease, see supporting a loved one with kidney disease.

When Should You Call the Transplant Team or 911?

Call 911 if the donor or recipient has:

Trouble breathing, chest pain, fainting, or sudden weakness, dizziness or change in vision
Bleeding that will not stop, or sudden, severe pain

Call the transplant team right away if a recipient has:

A fever, flu-like symptoms or a cold or cough that will not go away
Burning when urinating, or passing less urine than usual
Drainage from the incision, or pain or tenderness over the new kidney
Unexpected weight gain or unusual tiredness

Donors should call the team about signs of bleeding or infection at the incisions. Rejection can start without symptoms, so routine lab visits matter even when a recipient feels well.

Frequently Asked Questions

How Long Does It Take a Kidney Donor to Recover?

Most living donors make a full recovery and return to normal activities about 4 to 6 weeks after surgery.

Who Pays for a Living Donor’s Medical Care?

The recipient’s insurance covers medical costs related to the donation. Routine care, travel, lost wages and similar costs are usually not covered, but assistance programs can help.

Does Donating a Kidney Shorten Your Life?

No. Living donors have the same life expectancy as people who do not donate, though they should get yearly checks of blood pressure, urine and kidney function.

Can a Donor Back Out?

Yes. A donor can change their mind at any time, for any reason, up to the time of surgery.

How Long Will a Recipient Take Anti-Rejection Medicines?

For as long as the transplanted kidney is working. Stopping or missing doses can lead to rejection.

Where Does the Transplant Itself Happen?

Evaluations and transplant surgery take place at transplant centers. ANC provides kidney care before and after a transplant.

Talk to ANC About Transplant Care

ANC provides pre- and post-kidney transplant care, as well as care for people approaching or on dialysis. If your loved one has questions before or after a transplant, Contact ANC or call 651-772-6251.

Sources

Medical Disclaimer

This article is for general educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider with questions about your specific care and treatment options.