Living kidney donation: the psychological impact

A living kidney donor is a person who gives one of their healthy kidneys to someone with kidney failure who needs a kidney transplant (the recipient). Living kidney donors can donate to a family member or a friend, or to someone they do not know (this is known as non-directed altruistic donation). In most cases, a living-donor kidney transplant offers the best long-term health outcome for the recipient.

As a living donor, you are making a significant personal commitment by donating an organ to potentially improve the health of another person.

These are some of the experiences and feelings living donors might not expect.

If you find yourself struggling at any point – whether with physical recovery, unexpected emotions, or changes in your relationships – remember that support is available. Speaking to other donors, reaching out to your transplant team, or seeking psychological support via your GP or NHS Talking Therapies can help you process your experience and find reassurance.

Recovery from kidney transplant surgery can take time

After you donate a kidney, you may feel like you’ve been through the mill. “Donating a kidney is major surgery, and getting over it can take six to eight weeks,” says Leigh Vassallo, Living Donor Renal Transplant Coordinator at the Freeman Hospital in Newcastle.

“Living donor patients can experience quite a bit of pain and fatigue at first, and I don’t think they are always prepared for it. It can come as a bit of a shock if they feel unwell, especially as, unlike the kidney recipient, before the surgery they were well.

“A donor may have to stay off work for a couple of months, and can find it all quite difficult. We do try to warn people about this in advance – the idea is to prepare you for the worst-case scenario, such as complications and infections for instance, so if you don’t feel so bad it’s a bonus.

“It’s normal for it to take a while to get over the surgery and it’s not a sign that anything has gone wrong or that what you are experiencing is permanent.”

You will feel so happy that you’ve helped someone else 

“I’ve never known a patient regret donating their kidney,” says Leigh. “Most people experience deep feelings of satisfaction after the operation, especially if they know the recipient and can see the difference it is making to their quality of life."

Research confirms this; one study that followed up living kidney donors found that 98 per cent said they would do it again, with the benefits outweighing any difficulties.

Dr Emma Coyne agrees that donating a kidney can give living donors a great sense of fulfilment. “Most people experience a feeling of achievement that they’ve been able to help someone whose health was in jeopardy.

“One study of altruistic donors, who donated anonymously to strangers, reported a considerable positive impact on their psychological wellbeing. Based on feedback an average of two years after donating, any negative impact was limited.”

You may be worried about only having one kidney

Prior to donating, kidney donors are counselled by the kidney transplant team, and it will be explained that you can lead a normal, healthy life with one kidney.

Having said that, it's perfectly normal that you might have a wobble once your kidney has been removed. Just remember that your remaining kidney will step up and work harder to compensate for the loss of the other kidney.

To make sure your kidney stays healthy and functioning well, you will also get follow-up annual kidney function tests and blood pressure and urine checks.

Dr Coyne says that living kidney donors should be reassured that the clinical work-up before surgery will have established that they are in good health. “If there had been any concerns about your health, you wouldn’t have been allowed to donate a kidney. Only people in excellent health are allowed to go forward with donation.”

You may feel forgotten about and flat

Prior to donating your kidney, you may have had a lot of attention, but after surgery it may seem that it's all about the recipient. Although you are pleased for them, everything might feel like a bit of an anticlimax for you.

A review of 23 studies on living donor wellbeing found that although most kidney donors described their experience as positive, some did report feelings of emotional distress and mild depression after donation.

"Sometimes living donors will admit to us that they feel pushed to one side after the surgery,” says Jackie Pilcher, lead counsellor at Kidney Care UK. “Beforehand they’ve been in the spotlight for quite some time, then afterwards the focus switches to the recipient and that can leave them feeling left out and not needed anymore. It also coincides with when they might be recovering physically from the operation.

“These feelings normally pass, but donors who experience these types of emotions often don’t know who to turn to for support as they are not technically kidney patients. I would advise seeing your GP and getting a referral for counselling if you are struggling.”

Dr Coyne agrees that living donors can feel forgotten about after they’ve been discharged.

“It may help to plan for some social support from friends and family for this time period when you might not be able to do as much as you’d like or do the normal activities you would turn to. Maybe arrange for friends to take you out for lunch, or line up some books or box sets you’ve always wanted to tackle, or other non-physical activities you are interested in and enjoy.

“Having said that, if a bad week turns into two and then a month, get some help. Sometimes psychological support is available from within the renal team, although not always, but in every area of the country there should be access to NHS Talking Therapies, although there may be a bit of a wait.

“You will have follow-up from your renal unit so you can tell them if you are finding it hard to emotionally recover from donating a kidney. There are also online kidney support groups where you may be able to access peer support from other people who have donated.”

Your relationship with the kidney recipient may change

In most cases, after transplant the relationship between donor and recipient stays the same, or gets closer, although this isn’t always the case. These were the main findings of a review of 23 studies involving 2,732 living donors.

“A lot depends on what your relationship with the recipient was like beforehand. There’s evidence that if it was good, then the psychological outcomes are better,” explains Dr Coyne. “Where two people didn’t get on beforehand, their relationship may be more difficult as the donation doesn’t automatically make everything okay and if anything, it adds another layer of complexity.

“Some donors may feel an unspoken expectation of gratitude, which can affect their relationship if the recipient responds differently than expected. If the recipient isn’t looking after their health, for instance, that can bring up a whole set of unexpected feelings for the donor.”

Ideally, living donors and recipients should have these conversations before the donation, so the donor understands they will no longer have ownership of the kidney and won’t have control over it.

“It helps to talk about the donor’s expectations beforehand – do you expect health updates from the recipient after donation and if so, how often, for instance? Even where the relationship is really good, what will the impact of finding out difficult news be?”

As an altruistic donor, you may wonder what’s happened to your kidney

If you are a non-directed altruistic donor, who doesn’t know who their kidney has gone to, it’s natural to wonder about the recipient and how they are doing after the transplant. Some donors find this uncertainty difficult, while others feel at peace knowing they’ve helped someone, even if they don't have any further details.

“If you receive a letter from the recipient, it can have a really big impact and be incredibly meaningful, reinforcing the positive difference you’ve made,” says Dr Coyne. “For some donors, knowing their kidney has helped improve someone’s life provides a deep sense of satisfaction and closure.

“However, not all altruistic donors will receive an update, as recipients are not required to make contact. This uncertainty can bring up a mix of emotions, including curiosity, hope, or even a sense of detachment.

“To help prepare for this, all altruistic donors go through a thorough psychological assessment before donating. Research shows that altruistic donors rarely express regret, as they’ve had time to reflect on their motivations and expectations before making their decision,” Dr Coyne explains.

Coping with transplant loss if your kidney doesn’t work or is rejected

According to a study of living donors, those whose kidney had stopped working for the recipient sometimes reported severe physical and mental reactions.

“It’s entirely normal to feel really distressed and unhappy if you know the kidney you’ve given isn’t working,” says Dr Coyne. “It can feel as if it’s all been for nothing. You might feel grief, helplessness, guilt, or frustration. However, it’s important to remember that transplant outcomes depend on many factors beyond your control. Even when a donor and recipient do everything right, complications can still occur due to the recipient’s overall health, medical factors, or the body’s immune response. This isn’t a reflection of anything you did wrong.”

In some cases, transplants fail immediately or within the first few months, while in others, a donated kidney may function well for many years before gradually declining. While this can be difficult to come to terms with, it’s important to recognise that your donation gave the recipient the best chance at improved health and quality of life, for as long as possible.

“If you’re struggling with these feelings, it’s important to seek psychological support,” advises Dr Coyne. “Talking through your emotions with someone who understands can help you process your experience and recognise that your act of donation was still incredibly meaningful, regardless of the outcome.”