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Organ donation

Recovery at home and follow up after living donor kidney transplantation

Patients who have had surgery to donate a kidney are given painkillers immediately after the operation and when they are discharged from hospital, to use during their recovery period. Some people may also be prescribed antibiotics for a short period if they need them. However, living donors do not need any long-term medication as a result of kidney donation.

Many of the people we spoke to talked about coming back home from hospital and recovering from their operation. Recovery can take between two to twelve weeks, depending on surgery, individual recovery and the type of work a donor will be resuming. Donors need to rest after being discharged from hospital. They also need help during the first week or two if they have children or elderly parents to care for and with day-to-day domestic tasks.
 
The first few days back home, the donors we interviewed said they’d rested, slept, took it easy or just ‘pottered around’. They had been discharged from hospital with painkillers, usually paracetamol, sometimes also codeine. Several mentioned having discomfort or pain around their wound. Some found getting out of bed particularly painful. One woman said the painkillers she’d been prescribed hadn’t been strong enough, so her husband visited her GP who prescribed her something stronger. Many of those we interviewed felt unusually tired during the first week. Several said they’d had no or little appetite at first, though this improved over time. A few people felt constipated or had indigestion. Donors were careful not to lift anything heavy or over-exert themselves physically and had been advised not to drive. They managed to walk but at first very slowly and carefully. One woman was concerned about the dark colour of her urine when she first came back home but said this soon went back to normal.
 

At first, Wallee had very little appetite and slight discomfort around the wound. He spent five...

At first, Wallee had very little appetite and slight discomfort around the wound. He spent five...

Age at interview: 58
Sex: Male
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I was in a certain amount of shock and things that were slightly uncomfortable was that I found it difficult to eat, because obviously everything had happened in the tummy region. So my digestion wasn’t, you know, I wasn’t really having much of an appetite. And there was a certain amount of coming to terms with what had happened. I just remember having, sorry it’s hard to explain, an almost  kind of a deep experience about the whole thing, just something deep because I agreed to do something, and I trusted in something, so something else took place, which has remained with me ever since actually.


I was ready to go home. I was ready to rest and have food at my own time, not when the food came around in the hospital. And I had better food actually in hospital, that’s the reality. I could say, “Well I feel like a little bit of fish or something, potatoes.” I could actually say that because there is a menu in hospital but, you know, they’re cooking on such a big level.

I spent five weeks, something I’m going to have. I think it might be slightly wrong, something like five weeks in my friend’s house. Then I went to Denmark for a week. So somehow about two months, you’re still recovering for a few months after that. But two months, allow time. But it’s not like, it’s a case of really being ready, you’re up walking in a couple of weeks, shuffling around.
 

During the first week, most people received support from family or friends, several saying it was helpful to have someone there to cook meals and do the shopping. Darren stayed with his girlfriend for a few days. Di praised the support she got from her ex-husband. Her son lived nearby, and it was reassuring to know she could phone him if she needed anything. Clare said she had a lot of support from friends but sometimes found it draining having company when all she wanted was rest. She advised people with dogs to arrange dog-walking in the first week. Clare said she had used the opportunity of being off work to get some building work done at home, but that it hadn’t been a good idea. The drilling was noisy and all she’d wanted was sleep. Other people said their feelings of tiredness wore off quite quickly and they started doing light things after a few days.
 

Paul had some pain at first and felt a bit constipated. He recovered quite quickly. He went into...

Paul had some pain at first and felt a bit constipated. He recovered quite quickly. He went into...

Age at interview: 56
Sex: Male
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I came home by train, train and car from the station and then I was at home, pottering around. I spent a fair amount of time lying down or in bed. Obviously it was a bit sore at times and I needed some reasonable strength painkillers, but it wasn’t a big deal.

I got a bit constipated, which I think is always, and I know from what people tell me, that’s always something that is a bit of a nuisance and always gets people down a bit. And it was just quite interesting to have the experience myself. So I look on it as a kind of learning experience and it didn’t last that long. But, for a few days, I think it was probably the symptom in a way that troubled me most. Even more than the pain.

But I actually got better quite rapidly. I went out to lunch, a half hour’s drive away, the next weekend on the Saturday. I can remember I didn’t have much appetite still at that stage, but I was fit enough to travel. And in fact, though I probably shouldn’t have done, I actually went and did a clinical session about a week later, after the operation. And I think, probably in retrospect, I wasn’t entirely well. I don’t think I did anything dangerous. I’m sure I was fine. But anyway, so shortly after that I started driving again. So I was driving within a fortnight and I have no doubt that I was quite safe to do so. It was quite comfortable.
 

 

In the first three weeks of recovery, Maggie had some nausea, indigestion and the sensation of an...

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In the first three weeks of recovery, Maggie had some nausea, indigestion and the sensation of an...

Age at interview: 66
Sex: Female
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I had quite a lot of nausea as well, which was attributed to the stronger pain relief. And so nausea, while not life threatening, is something else you can do without. So –between nausea, bad smell in my head, indigestion, not having a good night’s sleep – my post-operative recovery, while not intolerable, was something that I was glad to eventually get through. And I was back at work.

I think that bad period only lasted three or four weeks, or less. And then I was just getting my strength back for a return to work. And I needed my strength because I was working in a unit with children who’d been excluded from school, and they’re a rough lot. You know, you can get shoved or nutted even, as I some... So it’s a rough environment.

And at that time, recovering from home, especially those first three to four weeks, was there anybody at home?

Yes, my husband works at home, which was ideal. And I had visits from friends. People bringing food, you know, very, very nice.
 

Wallee travelled from England to Holland to donate a kidney to a friend. His first week back to a friend’s house felt isolated because all of the other house-mates were on holiday.
 

Wallee felt a bit isolated at first, though the environment was perfect for recovery. He could...

Wallee felt a bit isolated at first, though the environment was perfect for recovery. He could...

Age at interview: 58
Sex: Male
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I went through a period of, it was kind of isolation because, even when I came back to this house, his friends were actually abroad on holidays. So we were in the house alone with somebody caring for us.

And so it was just a totally new experience. The neighbourhood we lived in was very quiet, perfect. Beautiful, comfortable, low house with a big garden. So it was easy to sleep and relax and rest.
Then the people whose house we were in returned from their holidays. And I got on with them very, very well, and I just continued to make progress, you know walking the dog, just going for walks and eating, sleeping, resting.

And eventually the doctor gave me permission to travel. And I flew to Copenhagen for a week and then I went to Greece for two weeks. And I stayed in my friend’s house because he was still recovering. So I actually stayed in his house in Greece, on this Greek island, and we spoke on the phone. So it was an unusual circumstance, but it was so, still if I think about it, it was so powerful.
 

The recovery time varied and depended, in part, on the time donors felt able to take off work and whether they had manual or non-manual jobs. Most of the people we interviewed started feeling a bit stronger in the second week and made good progress from there on. Some people said they started driving again after two weeks, though only on short journeys. Paul, a GP, went back to work after two weeks, though his first week back was ‘gentler’ than normal. Many people had started feeling a lot better after the first couple of weeks, though were still careful not to over-do it. Darren worked in a physically demanding job and said he planned to take two or three months off work because he didn’t want to take any risks with his health (see ‘Work and finances). Di, who wasn’t working at the time of interview, said she was particularly cautious. If the doctors recommended a week, she took two. Several said that their scars had healed gradually and, over time, were no longer uncomfortable, very small or hardly visible.
 
Maggie said she went back to work after seven weeks. She felt her recovery might have been slower than that of other donors because of the minor complications she’d had. She also worked in a demanding teaching job and didn’t want to go back too soon.  
    
A few people said that their time spent at home to recover had allowed them to slow down for the first time in ages, and they’d appreciated life at a slower pace. Wallee said it had given him time to read and watch some films. Clare said she thought she’d be bored doing nothing but no longer worried about retirement as she realised she’d have plenty to do.
 
All the living donors we interviewed recovered well and had no regrets about donating a kidney. Many said that, quite unexpectedly, they had gained enormously from the experience and that there had been ‘no downsides whatsoever’ (see Feelings about donating a kidney). Annabel said she had a very small hernia because of the surgery, but nothing that caused her any concerns. Harmanjit (Interview 38) said she had some adhesions after surgery but they too were nothing serious or worrying.
 

Annabel had a small hernia since the surgery, but it never became a problem. She ignores it now....

Annabel had a small hernia since the surgery, but it never became a problem. She ignores it now....

Age at interview: 64
Sex: Female
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There was one thing, I think I’ve got a very slight tiny little hernia. I’ve got a little lump underneath one of my tiny little scars. And I’ve had it felt by both my husband and a couple of doctors who’ve said, “Well, it does seem as if it might be a hernia. We could do something about it if it develops, if it becomes a problem.” But it never has become a problem, and I just ignore it now. I’ve had no other side effects at all. And I’ve been fit and well. I’ve had my creatinine levels checked and they’re fine. So I can’t think of any downside to it.

Follow up
 
Living donors are seen by the transplant team between two and six weeks after donation, and are recommended to attend an annual follow-up appointment for the rest of their lives. There is a small possibility of a slight rise in blood pressure and excess protein in a donor’s urine after donating a kidney. None of the donors we interviewed had had any problems relating to the donation. Studies have shown that there is no long-term effect on the health of the donor or their remaining kidney. Studies have also shown that donors tend to live longer than the average population. This is probably because they are selected on the basis of good health and are thoroughly screened before donation.

Donating a kidney does not mean that the donor’s health might not be affected in some way in the future. It is always possible that something unexpected could happen to the remaining kidney. As the health of all donors is thoroughly assessed before donating, the chances of this are very small, especially if the donor has a generally healthy lifestyle after donation. In the unlikely event that a problem occurs with the remaining kidney, dialysis treatment may be needed earlier than if the person had both kidneys.   

“The overall risk of developing ESRD (End Stage Renal Disease) after kidney donation remains very low, occurring in less than one in 200 (0.5%) donors, and it remains much less than that of the general (unscreened) population.” (Addendum to the UK Guidelines for Living Donor Kidney Transplantation -November 2015*)
 
Most people we spoke with had their first follow up appointment shortly after surgery, another after 6 months and then had annual check-ups after that. Several mentioned that they appreciated having their kidney function checked and that attending a yearly appointment was easy and convenient. Most people had their check-ups at a local hospital or at their GP surgery so did not usually return to the hospital where they had had their operation.
 

Paul expected to recover well and he did. At follow up, the doctor confirmed that his blood...

Paul expected to recover well and he did. At follow up, the doctor confirmed that his blood...

Age at interview: 56
Sex: Male
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I was well aware that there was, quite a lot of research had been done on the outcome for people who had donated kidneys. And that the outlook was very good, that there was some evidence that they actually lived longer and were healthier than the average population. And I know people say, “Well if you’ve only got one [kidney], and what happens if you get a problem with that one,” but the chances of that happening are very remote.

So I had every expectation that, once I’d got over the surgery, that there weren’t going to be any more problems. And indeed my expectation has been fulfilled. I went back and had the surgeon look at me and prod my tummy. And discourage me from doing too much too soon. But it all went very, very straightforwardly after the first, you know, as I say the first couple of weeks of discomfort or so. And I really haven’t had any problems whatsoever. Again, you know, perhaps I’ve been more fortunate than some.

But I do partly think that if you’ve gone into something confident, if you’ve gone into something expecting it all to go smoothly, then that does help for you to recover. If you go in very apprehensive and uncertain, and you go in with a very anxious frame of mind, then I suspect your chances of having problems are probably greater. And I’m sure that’s the case.

So I went in confident, and my confidence has been vindicated. Again I mean clearly there will be a small proportion of people who don’t have such good experiences and one has to take that into account when going ahead in the first place.

I’ve not needed any follow up to speak of at all. I mean I get a request from the hospital once a year to have my blood pressure checked and my kidney function checked. And I get that organised, very straightforward. My blood pressure remains exemplary. My kidney function is completely normal. My single remaining kidney, as far as I’m aware, and everything leads me to believe it’s functioning, it’s taken over. It swells a little bit to do a bigger job as it were, and that’s given me absolutely no problems at all. So I have no, apart from the physical scar, which isn’t even very obvious now, I don’t think there is anything to show for it at all.
 



Last reviewed May 2016.
Last updated May 2016.

*References
  1. Muzaale AD, Massie A, Wang M-C, et al. Risk of end-stage renal disease following live kidney donation. JAMA 2014; 311: 579-86.
  2. Mjøen G, Hallan S, Hartmann A, et al. Long-term risks for kidney donors. Kidney Int 2014; 86: 162-7.
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