Life before the transplant

Transplants are one of the biggest achievements of modern medicine and can save or greatly enhance the lives of seriously ill patients. Organ donation is giving an organ to help someone who needs a transplant. Kidneys, heart, liver, lungs, pancreas and the small bowel can all be transplanted.
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 how their life and health had been before they’d received their transplant.
Most of the people we interviewed had been very seriously ill and weak before they’d had transplant surgery. Some people had had a problem since birth or childhood that had got progressively worse. Others became ill later in life and then continued to deteriorate. Some recipients described being very breathless, tired and weak for several years before the transplant, and had needed oxygen to help them breathe and a wheelchair to help with their mobility. Diana and Cheryl had both had heart problems since birth and, later, had a heart and lung transplant. They described how they’d been determined to carry on with life as normal until they became too ill and weak to do so.

Diana became increasingly breathless and her health deteriorated even more in her thirties. By 40…

Age at interview 54

Gender Female

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I had problems really from birth because I was born with a congenital heart condition. And it wasn’t picked up until I was five because I was born in the fifties and there was no cardiac tests other than very basic ones.

So brought up with the sense that there was something wrong with my heart but not sure exactly what it was. Diagnosed properly at five and told that I was likely to have a very poor prognosis. But in fact I did much better. But I developed, over my life I developed pulmonary hypertension, which caused problems in my lungs.

And one of the main problems I was living with was getting very cyanosed, blue on exercise and breathlessness. So for all my life I’ve been very, very breathless. But I was, I think I was quite lucky in the sense I had a reasonably normal childhood and a reasonably normal adulthood up until about the age of 35. But I’d always had the sense of my life not being very long, and I kind of peaked in my, I’d say end of my twenties. My health peaked. And then started really deteriorating from early thirties.

And at that stage I knew time, the tock was clicking, no the clock was ticking [laughs] at that point, so I knew that my time was getting more limited. And through my thirties I started having quite major arrhythmias and I was much more blue and breathless on exercise. And by the time I reached forty, I couldn’t walk very far. I needed a, I had a disabled parking disc at that point. I couldn’t manage stairs very well. I couldn’t walk any great distance.

And then when I was about, I suppose early forties, everything started falling to bits because I had a virus, a dose of flu, and at that point the pulmonary hypertension got a lot worse and I could hardly breathe most of the time. I’d get very breathless just making a cup of tea or trying to do anything. And at that point I took medical retirement from work. And I was then told, well I think the possibility of a transplant had been around for a very long time.

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Two years before transplant, Cheryl couldnt feed herself, brush her own teeth or walk to the…

Age at interview 52

Gender Female

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The two years before [transplant], I lived in an armchair. I couldn’t feed myself. I couldn’t brush my own teeth, brush my hair, go to the bathroom. I couldn’t do anything. I had to be fed. It wasn’t a nice time for me because I’m very independent and it was one of them times where sometimes I wished the call would come that I would actually have the transplant, because I wanted to get back to normal, what you call normal. But I also knew, like I said, they were waiting for the right ones [organs].

I think not being able to brush my own teeth was one of the hardest things because I brush my teeth three or four times a day. And that was hard but the hardest of all, for me being ill really was easy, the hardest of all was watching my family and watching the looks on their faces.

And you’ve heard that saying when you’re crying inside and yelling and screaming, that was me, because I wanted to tell it, you know, there was a smile on my face 24/7 because I wanted them to know that I was alright, and I was dealing with what I was dealing with, because it made me feel better and I know it made them feel better. Some days they had pitiful looks. I said, I don’t want that. I’m fine. The transplant will come. While I can sit here talking to you as best I can and breathing, then I’m fine

I had 24-hour oxygen so there was no problem of me stopping breathing or anything, because I’d got that support. And I still tried to do things with my daughter; obviously a lot went by the way. She did dancing and my Dad was taking her to dancing classes which, it does upset you because you want to be a part of your daughter’s life. So them two years was very hard.

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Jill had had a heart transplant after several years of heart problems. She’d had a pacemaker fitted but became increasingly more tired, breathless and slow. She hadn’t realised she’d needed a transplant until she read her medical notes.

Jill didnt know how long shed have to wait for a transplant, be it a week or several years. She…

Age at interview 68

Gender Female

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They just said it could be a week, it could be months or it could be years. That was all I was told. So I had a bag packed ready, and then the call came. We zoomed off up to [hospital name].

Yes. What had you been able to do before the transplant? I mean at this point you were quite breathless and you had a pacemaker, but day to day what were you able to manage doing?

Well I could function fairly well. I was getting quite close to the stage where I was stopping and starting a lot. I couldn’t walk up hills without really, and the stairs were like Mount Everest and it was like a vice like feeling in my chest.

Were you able to carry on working at this point?

I worked until about six months before my transplant. And then I had to, yeah I didn’t.

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Justine had had a double lung transplant and Helen a lung and liver transplant. They described how weak they were before the surgery. Justine had had a very rare condition, which was diagnosed when she was 31. Helen had had cystic fibrosis since birth and it had become more serious from the age of 24.

Justine was told she was at the end stage of her disease and had about eighteen months to live…

Age at interview 37

Gender Female

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I was diagnosed with this very rare disease called Lymphangioleiomyomatosis, which is called LAM for short. And I was actually told that I was at the end stage of my disease. I had maybe twelve, eighteen months to live, and I needed a double lung transplant to survive.

Words, emotions, it’s so hard to say. I just felt everything crumble around me. I was a young woman in my prime. When you get told devastating news that you’re going to die, or, you know with transplants it’s a 50’50 chance, some people do, some people don’t. And I knew now I was in this category.

But being the person I am, I wanted to be positive and the disease, I did some research with my family, we found out it affects one in a million women only. There is no cure. it’s not genetic, it not hereditary, and I wanted to set up a website to give inspiration and educate people in this disease.

Unfortunately, it didn’t stop there. My lungs kept collapsing and I was rushed into so many hospitals. When I said to doctors I had this disease called LAM, they laughed at me. They never knew what it was, never heard of it. And I was so glad I’ve set up my website because doctors would then hover around and read my illness, and then come back and take me more seriously.

My right lung I was told at this stage no longer worked. I was only surviving on my left lung, which had less than 30% function. The illness actually causes cysts to grow inside the lungs and so the pain I understand now I was feeling, over these seven to ten years, were cysts growing inside my lungs, filling up my airways, making it difficult for me to breathe. The cysts would pop, which would also explain the pain that I would feel, and at this stage I had hundreds and hundreds of cysts.

My left lung then collapsed thirteen times, so overall I had fifteen lung collapses. I was left fighting for my life so many times and one time my left lung had collapsed three times within a week.

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Around 24, Helen started feeling increasingly tired and getting chest infections. She had…

Age at interview 39

Gender Female

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I was about 23, 24, my health was starting to deteriorate. I started feeling tired, hadn’t really had chest infections up until that point, but I started getting them. And the guys at [name] Hospital in [place name] decided that I needed to have intravenous antibiotics, which was a big shock to the system because it was needles and I didn’t really like needles. But I started having those. And they were kind of seen as an MOT. They would tide me over and I’d be fine, and I’d just get on with work and doing whatever else again.

I was very interested in amateur dramatics and I started working with a group. And I guess it was when I was about 30 that, just kept on getting more and more chest infections. The antibiotics weren’t really doing their job.

Transplantation had been hinted at when I’d gone to my clinical visits, but it was in the back of my mind. And they said, Look but I think they gave me a DVD to watch or a VHS at the time. And just said, Have a look, see what you think Of course I was like, Oh no, I don’t need that Because really I hadn’t been effected in ways that other people had so I thought no, that won’t be me.

And then just generally it went, my health went downhill very, very rapidly. I was having the IVs, I was going to school [place of work]. I was working with them [IVs] because I’d do them from home myself. They taught me how to administer them myself. I’d mix up the mixtures and the concoctions and put them through my arm and that was fine. But as soon as that course had finished, I’d have about two weeks and I’d be fine, and then it would all start again.

I lost so much weight. I actually had to put weight on before they would do the op. Because they said in this condition, you wouldn’t survive. So I did overnight feeds. I had a tube put in through my stomach and I used to have this horrible thick milk shaky drink which is about 1000 calories per bottle, go through every night. And that’s the only, because it’s kind of like force feeding really, but that was the only way I could put the weight on.

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Sue had been very healthy until the age of 29. After having an allergic reaction to seafood, she developed a rash, had vomiting and became very yellow in colour. Completely unexpectedly, she was told she had liver failure and was rushed to hospital, where she was told she would not have long to live without a transplant. This was shocking news for Sue because she’d been healthy only weeks earlier.

A week after being admitted to hospital, Sue was drifting in and out of consciousness. She…

Age at interview 45

Gender Female

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I settled down into a ward, still didn’t know there was anything wrong with my liver, just wondered why I was turning yellow and being sick all the time. couldn’t keep my food down.

So then this lady [nurse] came round to the bed and she said that I’d been sent in here to find out who was having a liver transplant. So I looked at her and I said, Well it ain’t me. There’s nothing wrong with my liver and I’ll be going home soon

Well within the next day the lady still returned. Kept looking at me and saying, Well you’re going to have a, you’re having a liver transplant So I kept replying to her, No I’m not, there’s nothing wrong with my liver. Go away So she went away.

About a week after I was in [hospital name] and I was going in and out of consciousness, and I was swelling up. I swelled up like the Michelin man. And I couldn’t even walk or talk or do anything except lay in bed and get, and just rest.
I was going in and out of consciousness. And then two days later this doctor come round to see me and he said I needed a liver transplant. I told him I didn’t want one. But he said I would have to have one because I had thirteen hours to live. So then it was a bit of a shock.

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Some of those we interviewed had had serious kidney problems over the years and these had gradually made them more tired and weaker. They’d had to restrict their diet and liquid intake and many felt exhausted and drained much of the time. Some had had dialysis while they’d been waiting for an organ to become available; others had had their transplant before needing to have dialysis. Most of the people we spoke to recalled feeling very tired and drained, though two people we interviewed said they’d managed to carry on with life fairly normally. Regular kidney function tests, however, showed that their kidneys were becoming less and less effective and that they’d need a transplant.

Janice became more and more lethargic and could no longer work. She had rashes, vomiting and…

Age at interview 43

Gender Female

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I’ve always been slightly tireder than other people and not had the amount of energy. Unlike some, I always had to go home earlier and things like that. I never had the same amount of energy. But then I gradually became more and more lethargic, to the point I couldn’t go to work.

At this time I didn’t actually know what was wrong. I was having rashes all over my body, and it started to go very yellow and was very sick all the time. And that’s when I was taken, my GP sent me into hospital to have a lot of tests done.

And that’s when they discovered that my kidneys had completely stopped working, completely. And I was put on emergency dialysis until I got better, then I was put onto the normal dialysis. And then, as I say, that went on for about six months, six to nine months, and then they sorted out the transplant with my brother. My brother offered to do it. And the transplant took place in April 1999 I think. And yes, it was uphill after that all the way.

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Liz got steadily worse and her kidney function continued to deteriorate. She started dialysis at…

Age at interview 40

Gender Female

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It got progressively and quite steadily worse. I tried to do a part time job at Allder’s Duty Free and found that I had to change my shifts because I was being sick and I was being, I was quite ill. And they said that things were getting quite bad, kidney function is down. I was supposed to start music college in September 1989 but, by that point, my creatinine level in my blood had risen so far that my kidneys had gone into chronic renal failure, and there was no going back.

So 22nd September ’89 I started dialysis. I did feel that my world had fallen apart by then. I was supposed to be at Music College. I was coming up for 19. I’d just spent the last two years being ill. It didn’t seem really fair that, I’d lost a lot of contact with all my friends that are going to a different place. It was before the era of social networking on computers and stuff. So it was difficult to keep in contact and I started dialysis, which was obviously three times a week. And dialysis is different now to what it was back then. I found it quite terrible. I was down, in and out to [name of] Hospital three times a week.

I was very ill on dialysis. I dropped to seven and a half stone. I’m not supposed to be a size zero but it was pushing it. Obviously the diet that I had was restricted. It was before the age of EPO or anything so I was very, I got very anaemic. I needed blood transfusions. It was just a terrible time. I think the nine months that I was on dialysis probably was the most testing of it all.

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Deepak had had a family history of kidney disease. His grandmother, mother and two uncles had died from it. When his older sister was diagnosed with it, he started to have tests to see if he could donate a kidney to her. It was around this time that he learnt that he, too, had kidney disease. Over the years, he became increasingly tired and less able to spend quality time with his wife and two young children.

For Deepak having kidney disease was an emotional roller coaster that effected the whole family…

Age at interview 49

Gender Male

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It was a very strong emotional roller coaster really from very strong lows of feeling Oh my goodness, I’m a failure. I’m letting my wife down. We had two children, four and just under two, two boys, very grateful for them. But we wanted four children. We wanted a daughter, and so that was difficult having to tell my wife, Look, for your sake, I think we shouldn’t have any more children And it was a totally rational decision, but it’s a very emotionally difficult decision, especially if somebody likes big families and comes from a big family.

So that was quite an emotional down for us to think, my goodness. And then the reality of My goodness, if I have kidney disease and I have to give up my normal work, how do I afford things? How will my family cope? What about finances Again that has a whole roller coaster affect on people. And so that was quite difficult because again we felt that we wanted the best for our children, as everyone does.

Going through the illness is quite difficult because again you can’t do normal things, like if it’s a nice day, just think right lets go down to the coast for the day. Or let’s go and visit family and relatives up in Leicester or wherever. You really have to plan and so, what we call a normal, healthy family life, just gets totally undermined really.

The quality time as I call it, just doesn’t exist. You’re always watching the clock for your next dialysis session. The kids are growing under that influence. Mum has to come to the hospital, so it creates a lot of uncertainty in the family and emotional ups and downs.

We did have our highs obviously. You know, when things are going well, and for periods kidney disease is not the worst thing that can happen to people, believe it or not, even though when I was facing it I felt that was the worst that can happen.

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Aged 17, Holly went to hospital with what she thought was a sickness bug. She was told her…

Age at interview 23

Gender Female

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It was December 2004 and I was 17 years old. I was at college and I started to feel really ill. I had a sickness bug, well what I thought was a sickness bug. It lasted longer than usual. So I went to the doctor and he agreed that it was a sickness bug, and that I’d be fine in a few days. Drink water, clear fluids, the usual.

And then, a few days later, I was still feeling pretty rough. And it was over the Christmas period and my doctor’s wasn’t open, so I went to an emergency doctor. And he took my blood pressure and I’d never had my blood pressure taken before, so it was the first time I’d had my blood pressure taken. And it was sky high. I can’t exactly remember the numbers in my head, but it was sky high for a person of my age. And he immediately knew that something wasn’t right and he said to mum and dad, Shall we ring an ambulance or will you be able to take her to the hospital

And so the hospital was forewarned and my mum and dad took me to the hospital. And I was put in an assessment ward, various tests took place, urine, blood tests, a central line was put in. And, up until this point, I just thought I had a sickness bug, I’d be home later in the day. I didn’t think they’d keep me in or anything like that.

And then we kept hearing the doctor on the phone. I was in a cubicle but the desk wasn’t too far away, and he kept saying, This is [name of local] Hospital, is that the [name of city] Hospital? I have a patient here whose kidneys aren’t working very well I kept hearing the word kidneys crop up now and then, and then the thought had never crossed my mind, anything about kidneys. I just thought I had a sickness bug.

And then they said that I needed a scan on my kidneys to check that they were okay. I went for a scan and then you could tell immediately by the look on the doctor’s face that something isn’t quite right. I heard the words, they’re very small Something’s not right And then silence. And my mum and dad were waiting outside and they knew that something wasn’t right.

So after the ultrasound I went back to the ward and then the senior doctor came in and said, Your kidneys aren’t working properly. They’ve shrunk. We don’t know what’s caused it but you’ll need to go on the transplant list. You’ll need a kidney transplant It was all in one sentence, hit us like a tonne of bricks.

And then he just walked out and left the room, and we were just left to deal with it, which looking back, that wasn’t the best patient bedside manner that we’d seen. Obviously we were in such a shock we didn’t have time to complain or anything or like that. But that wasn’t the best way that it could have been dealt with. So then I was whisked off to intensive care.

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Malcolm had a kidney transplant in 1981, with his mother being the donor. Several years later, however, it rejected. He had to have dialysis and, in 1988, had a second transplant from a cadaveric donor (an organ or tissue donor who has already died).

Malcolm was able to carry on with life as normal. He felt depressed after his first kidney…

Age at interview 65

Gender Male

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I was very active, so the doctors wouldn’t have thought there was anything wrong with me.

Yes. And after the transplant, was there a difference because ,

Not really, I don’t think so. Well certainly before the first kidney I was doing everything. I was really quite fit. And then towards the end, say before the second kidney, I had to go on dialysis. And the dialysis made you feel pretty rotten because it was peritoneal dialysis. And I actually had to go into the hospital at the weekends and stay there for three days whilst they dialysed me through the abdomen, via the peritoneum, and it depressed you certainly.

Physically, I don’t think I was any worse, but I was really quite depressed with the fact that my mother’s kidney had completely failed. And I had to contemplate a life on dialysis. So I think it was more a mental thing, it wasn’t really a physical thing.

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Hardev felt fine and kept busy and active. He had blood, urine and kidney function tests every…

Age at interview 71

Gender Male

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No, I was fine. I was fine. I didn’t have any problem at that time. I was fine. But I used to go to the clinic, I think every month or so, sometimes after a couple of months for them to collect my water. So that part was started, you taking your waters and they take the blood and they check the performance of the kidney. And they started deteriorating, coming down and down and down. But even then, even when it was 10%, sorry 13%, when he said you’ll have to go for dialysis, until then I was fine.

Really. So you didn’t have anything like tiredness or,

No, nothing. I was in fact actually very busy all the time.

Yes. So you were still quite active right up until,

That’s right.

Yeah.

Yes, stayed very active.

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During this very difficult time, recipients had had support mainly from family, close friends and sometimes from other patients. Many praised the support they’d received from parents, partners and their own children.
Before a patient is added to the national transplant list by the transplant centre, they must be assessed to find out if they’d be suitable for a transplant. A few people said it was only when they’d been assessed that they’d accepted they’d needed a transplant. Some kidney recipients received a kidney from a relative or friend and did not need to go on the transplant list. Several had dialysis until an organ became available.
Many of the recipients we interviewed described waiting on the list to have a transplant (see ‘Waiting on the list and the call for transplant‘).

Deepak had to be assessed before his name could be placed on the transplant list. He needed to be…

Age at interview 49

Gender Male

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We knew we were on the kidney organ donor register. I had met with the transplant surgeon because, before you go on the organ donor register, they do a complete check on you. Receiving a transplant is not the easiest thing in the world. People have to be physically strong enough, so the heart and the ECG and everything else has to be done. But also emotionally strong enough to go through with a transplant, which I obviously didn’t know then.

But my transplant surgeon was very good and he asked me the right questions to make sure that I was prepared. Talked very clearly about the consequences and the side effects of long term medication. And the fact that a transplant doesn’t necessarily last forever. It could last for ten to twelve years on average. Some last longer, some less. But the possibility of rejection is always with you, and the discipline of taking medication is very, very important. So I took those on board.

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The recipient’s health

There is no guarantee that a kidney transplant will work. However, living kidney transplantation is overwhelmingly successful. Here, donors talk about the effects of their...