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Organ donation

Having transplant surgery

We interviewed recipients who’d had different kinds of transplants. Experiences vary from person to person and also depend on the kind of transplant involved. Here, recipients of a number of different organs talk about their experiences of having transplant surgery. This summary is a brief overview of some of their experiences.
 
When recipients knew that an organ had become available for them, usually after a phone call from the hospital which they may have been waiting for weeks or months, they went straight to the hospital. There, some of them had been given more tests. At this stage, most people had been aware that the transplant still might not go ahead if, for example, tests showed the donor and recipient were not after all a compatible match or if the organs had been unsuitable for other reasons. Several had had ‘false alarms’ in the past and had known that this could happen again (see Waiting on the list and the call for transplant).
 
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Holly expected it to be busy when she got to the hospital. Instead, she waited for an hour before...

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Age at interview: 23
Sex: Female
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That night, the transplant took place. It wasn’t what I thought it would be. When we got to the hospital I thought it would be all hustle and bustle and people running around after me. And we were just put in a waiting room for about an hour. No-one really spoke to us, told us what was happening. I had dialysis and the various tests took place' cross-matching; blood testing; tissue typing, and then eventually I was told that it was definitely going ahead.

So I went to theatre, five and a half hours later came out of theatre. Greeted in recovery room by my mum and dad and the doctor. And the rest is history.

Since then, I spent three weeks in hospital. It wasn’t plain sailing at first. It took ten days for the kidney to start working and kick in properly. But I was released three weeks later and not looked back since.
 


When recipients had been told the transplant would go ahead, many had said their goodbyes to their family, uncertain what the outcome of surgery would be. Some had already been in hospital when they were told that they would be having transplant surgery. Justine had been in a High Dependency Unit for several months. When she was strong enough to have surgery and two lungs had become available, she said her goodbyes to her family. Helen, who’d been waiting for a lung and liver transplant, said she had no fears about the surgery beforehand. Her health had become so poor that she’d known she could not have had long to live without the transplant. Diana (Interview 03) had felt numb before surgery and, before anaesthetic, panicked and had wanted to go home. When the doctor gave her the choice, she realised she needed the transplant.  
 
Hardev went into hospital with his daughter, who would be donating a kidney to him. 
 

Hardev wasn’t worried about what would happen to him or his daughter. Being a Sikh chaplain, he...

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Age at interview: 71
Sex: Male
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How did you feel before going into hospital for the transplant?

I don’t know. I left it to God. What I believe in is that the angels are not flying in the air, they are on this earth. And they help you in the form of other fellow human beings. I always believe in that. I think perhaps Harman [my daughter] came like that to me and she helped me. But I left it to God. Never ever felt anything.

Yes. So you had a very strong faith carrying you through all of this?

That’s right, yes. I never felt, even when we were going from here, it didn’t occur to me that anything was going to happen. They took them into the theatre, so I just, I didn’t, I just left it to the Almighty.

Yes. Did you have any worries at all or you felt whatever will happen will….

I didn’t, no. I never felt anything about whether I’ll come alive from there or Harman will come alive from there. I didn’t worry about my family. I felt perhaps, you know, He’s looking after us and everything will be fine.
 

 
Some recipients recalled having the anaesthetic and then coming round afterwards, when the transplant had been done. Patients are given a general anaesthetic, which means that they are asleep during the operation. Some recipients described how they’d felt when they’d first come round. Several had felt disorientated or confused at first and, very briefly, were unsure where they were. A few said they’d felt sick because of the medication they’d been given. Some mentioned feeling pain or soreness. Others said they noticed a positive difference in how they were feeling straight away, e.g. they no longer felt so breathless or they looked a healthier colour.
 
Diana had had a heart and lung transplant and felt ‘dreadful’. Cheryl had also had a heart and lung transplant and had noticed that her hand looked pink when, during her illness, she’d always looked blue. This highlights how, even with the same kind of transplant, experiences can vary greatly for many different reasons.  
 

Diana felt disorientated at first. She had lots of drains and tubes. Several days later, she felt...

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Age at interview: 54
Sex: Female
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The next thing I knew it was Tuesday morning. I woke up and I said, “When are you going to do the transplant or have you done it?” or something. And they said, “It’s all done.” And I’ve got some very odd memories of being in intensive care, just sort of disassociated memories. I remember talking Greek to some of the nurses because I’d been learning Greek. They said I was speaking Greek quite well, under a haze of morphine. And I remember having a bath… someone washing me. And I can remember telling one of the doctors what an arrogant little sod he was, obviously my true personality coming out, times of stress.

And then the next thing I knew it was Tuesday morning and they were waking me up and saying do I want any breakfast. I felt absolutely dreadful. And I felt, “Awgh,” poisoned and horrible and I had big tubes coming out of my, drain, chest drains in, enormous tubes coming out of my chest and wires coming out of my neck, and wires coming out of both arms. And they said, “Right, stand up.” And other things like that. So I had to stand up.

In intensive care?

Yes. It was just the end of intensive care. And I had to stand up and walk over and sit in the chair. Then I had to get into a wheelchair. And it was all a big palaver, and I was feeling dreadful.
 

 

Not long after coming round, Cheryl saw her mother looking at her from behind a glass partition....

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Age at interview: 52
Sex: Female
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I remember waking up in the intensive care and I could see everybody. I was like in a big room on my own, and there was doctors in there and machines. And there was nurses running around and I’m just sat there looking. And this nurse turned round to me, and, “What are you doing awake?” But I’d obviously got the ventilator in. And they asked the doctor to come and see me and I was doing fine. And then I just looked to my left and my Mum was there behind the glass partition. She was crying. So I put my thumb up, as you know, as if to say, “Don’t cry.” And I’d always said to myself that the first time I saw my Mum afterwards, no matter whether there were a ventilator there or not, I would tell her that I loved her.

She didn’t cry for long because she was happy to see that I looked different. And her first words to me were, “Your lips are pink.” Because they’d always been blue. My cheeks, my nose, my lips, my hands, my legs, everything was blue. And I lifted my hand up. I remember just lifting my hand up and seeing my hand pink, which I’d never seen before. And it was a feeling of overwhelming surprise because I didn’t realise a transplant would change so much, so quickly. I knew why I was blue because of my oxygen levels and things and my illness, but the transplant just, it just changed it more or less straightaway.
 

Some of the people we interviewed who’d had a kidney transplant said they’d noticed a difference in how they looked and felt relatively quickly. Deepak and Chris, though, had had complications. Chris received a kidney from a cadaveric (deceased) donor and, after about ten days, it had rejected. There is no guarantee that any transplant will work. However, living kidney transplantation is overwhelmingly successful with 97% of live donated kidneys working well at one year. This compares with a slightly lower success rate of 94% for kidneys from deceased donors (NHS Choices 2014).
 

Shortly after surgery, Deepak’s new kidney seemed to stop working. When it wasn’t getting any...

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Age at interview: 49
Sex: Male
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It started working when it was transplanted. However, within a day, or even less than a day, a few hours after the transplant occurred, it slept. It just stopped functioning, which was a real cause of concern to me but apparently less to the medical staff even though at that time, medical records later on that I discovered, my creatinine was 2600. The norm is 100 for a man. So it was way above and medical records have proven that I was five days from dying if things weren’t fixed.

And that was a great cause of concern, even though my doctor kept telling me, “Look, I’ve got 100% track record. I’m not going to spoil my reputation because of you.” Which was slightly comforting but worrying as well. And that was quite difficult. Having been through an operation, having been unhealthy and obviously the toxins are continuing to build in your body. Of course, being in a hospital and not being able to eat what you want and be with your children. I had two young children, four and just under two at that time. And that was a very difficult time, being separated from family because we have a very close family.

Day seven I particularly remember as one of my darkest days in my life where I remember telling my wife who came to visit every day, “Look, that’s it. I’ve had enough. I’ve been ill. I’ve gone through this operation, been cut open and all these tubes coming out. Just why don’t you do me a favour. I think we’ve got enough savings to keep you going, to have a normal life, the house etcetera. Just pull out one of these plugs because I’m ready to die. Dying would be better than this.”

And that was difficult. That was very, very difficult. And I’m a strong believer and I have a strong faith, and I knew there were hundreds of people praying for me. Not just in this country but some of the other countries that we’d been in. And that gave me a bit of reassurance to keep going, as did my wife as well. And it was day nine actually that the kidney started to get better.
 

 

About ten days after surgery, Chris had a terrible pain in his hip. He was taken into theatre...

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Age at interview: 52
Sex: Male
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The operation went well, and I was recovering and I was about to be released home. I was sitting in my room, I think it was 10 days after the operation, when I felt a horrendous pain in my hip. I can’t remember whether it was left or right now, and I’ve never felt anything like it. It struck me down basically. I managed to crawl onto the bed and press the buzzer and people came in. And gradually the severity of it dawned on the nursing staff and doctors.

The pain was brought under control, you know I was given painkillers. And then that was the final assessment after a couple of hours was made, and it was decided that I needed to be seen. So I was taken down to the operating theatre and put under anaesthetic. And then woke up four or five hours later to find that they’d removed the kidney.  Because I’d had an aneurysm, there was an infection which had put a hole in one of the main arteries in my hip. And they reckoned that if that was repaired, but they couldn’t risk the kidney because the infection had obviously come from the kidney, they couldn’t risk it happening again.
 

 
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Janice felt better straight after her transplant. She and her family noticed she looked pink...

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Age at interview: 43
Sex: Female
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I was in hospital for two weeks. My brother was in hospital I think for about ten days. Obviously you need a lot of extra care until the kidney settles down and with rejection and things like that, problems.

Can you remember how it was in those two weeks that you were in hospital? Can you remember that time?

I was very happy. Because immediately I felt so much better, yes, immediately from when I woke up from the operation because it started working straightaway. Just really happy really. And looking forward to everything.
                  
Who was around visiting?

My family, my husband’s family, some friends.

And what did they say because they would have seen the change in you too?             

Yes, they said that I was a much better colour because I was always very yellow, and then suddenly I was pink [laughs]. And they said that I’d changed colour straightaway, I was just, became a much better colour straight away.
 

Some recipients, like Deepak, had had problems at first but doctors had tried different medications and the patient had started improving. Many then made steady progress daily. Several recalled how the equipment they’d been attached to had gradually been removed. As they became stronger, physiotherapists or nurses had encouraged them to try and walk and do gentle exercise. When they were well enough, they’d been transferred from intensive care or a high dependency unit to a ward, where they continued to make good progress. Two people, who’d had a heart and lung transplant, said they stayed in a hospital flat before being allowed home.
 

Gradually, the drips and tubes were removed and Helen was encouraged to start walking. She needed...

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Age at interview: 39
Sex: Female
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Eventually they start to remove drips and wires and tubing, that’s all removed. It’s difficult because they want you to start walking around as soon as possible because that’s what gets the lungs working. But it’s difficult because you’re connected to machines, and you have chest drains which have got very large kind of buckets on the end of them full of horrible fluid.

So at first walking around, you need help from a lot of the staff. But I have to say at the [hospital name], I don’t know about other centres, but at the [hospital name], the High Dependency Unit that I went on initially, they were angels. That’s the only way I can describe them. They were fantastic. It’s one nurse to two patients and it was wonderful. And anything I needed or wanted was there.

When I went down to the general ward, which is actually, it’s a heart ward, because they haven’t got a separate lung one at the [hospital name]. That was a different ball game. That was like, we described it as boot camp.  It was a ward with a lot of elderly people who’d had triple bypass surgery, open heart surgery. Nurses very few, too many patients. You rang the bell, you waited hours before anybody came and that got very frustrating because I actually ended up helping one of the old ladies on my side of the room because nobody came to help her.

And then I was angry then actually because I’d come from this fantastic place upstairs where everything was done for me, and okay, I was more independent but I’d still only just had a big operation. And I kind of felt quite neglected in there. And I just couldn’t wait to get home then really. 
 

Helen had had a lung and liver transplant.
 
Many recipients talked about the care they’d received from doctors and nurses. Most had been happy with it but some had been disappointed with the way news or information had been given. Recipients also talked about the progress they’d made once at home and the care they’d received after their transplant (see Health issues after the transplant).
 

Diana had vomiting for four months until finally it was controlled with medication. She felt that...

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Age at interview: 54
Sex: Female
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One of the really, I think unacceptable things that happened to me was the nursing staff’s attitude towards me. Because when I first came into the ward, one of the nurses, I was feeling very sick and I said, “I’m going to be sick, have you got anything that will help? What can I do?” Thinking that these nurses must be used to post-operative nausea, vomiting. They’ll tell me what to do. And this nurse said to me, “Oh, it’s just mind over matter.” I had just vomited down the front, and I said, “I think it's matter actually.” I said, “No mind in it whatsoever.”

I think, I don’t know. Eventually it was controlled, but it took four months for them to get a good control over the sickness.

Various things were tried. It was intermittent. I was sick and then okay and then I had the sickness and then I was okay. I think looking back there was a lot more they could have done. There’s a lot more I could have done. I think, because the combination of the drugs and the anxiety, was dreadful. I think if I’d went through that again I think vast doses of anti, Anxiolytics and something to calm me down as well as all the other medication would have been a good idea. But, I don’t know, it wasn’t very well managed that.
 

 
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Hardev felt that the care he was given was perfect. He was also given a number to call if he had...

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Age at interview: 71
Sex: Male
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And the support from the health professionals was there?

I think, as far as I’m concerned, it was perfect. Everything. They’re very, very helpful. They advise you. They help you. And actually they say that if you feel the certain things, if you feel, if you have diarrhoea or other problems, pain in the kidney, you should quickly, straight away, they have given us a book with a telephone number, emergency telephone number. So they are there to help you all the time.
 



Last reviewed May 2016.
Last updated May 2016.
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