A-Z

Organ donation

Health issues after the transplant

When recipients were first discharged from hospital, they were often weak and needed to recover from the major surgery they’d had. Many of those we talked to had frequent check-ups at the hospital at first to monitor the new organ(s). Some recipients said they’d gradually built up their strength and it had taken several months for them to start feeling better. One man, who’d had a kidney transplant, said it took him about seven weeks to recover. After that, he was driving again and continued doing his busy voluntary work. Linda, who’d had a kidney/pancreas transplant, said she’d had a few ‘blips’ when she first came home but, when her medication was changed, she started improving.
 

Justine was thin and fragile when she first came home and found it hard to walk. She could do...

Justine was thin and fragile when she first came home and found it hard to walk. She could do...

Age at interview: 37
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

So you were out after three weeks. In that time every day you saw small improvements?

Yes. I mean I will admit I was very fragile. I was still very thin. I was trying to walk every day. Walking was a bit of a challenge, but I thought if I’ve walked five minutes today, then I’m going to walk six minutes tomorrow.

It’s also your own attitude. You can have this gift, but you have to help yourself to get where you, to get better. And then it was a gradual process. After about three months, I think I was able to do a bit more walking. And then I thought I wanted to start exercising again.

But it was very slow. They didn’t rush in at the deep end, took it day by day. And I started to feel myself coming back.  I lost, my appetite came back. I put on weight. I’m now a woman, I’m not a skeleton. I have all shapes and curves I never had before. And I see it as a wonderful thing.
 

 

Linda was vomiting and had diarrhoea. She had oesophageal thrush and wasn’t tolerating her...

Linda was vomiting and had diarrhoea. She had oesophageal thrush and wasn’t tolerating her...

Age at interview: 51
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

I took chronic diarrhoea. However, they sent me down to my local hospital and I was in there for a week. I couldn’t eat at all. I was being sick all the time. I had chronic diarrhoea, and this went on for nearly three months. It turned out I had oesophageal thrush. Which they cured.

I had to go to the hospital every Monday, that I had my transplant in, and every Wednesday, Friday to my local hospital. But, on a trip up to my local, my transplant hospital, the consultant came out, by which time I was in a wheelchair because I couldn’t even stand up. And he said, “Walk into my surgery.” And I said, “Well, I can’t.” I said, “Stop the diarrhoea, and I’ll walk, I’ll dance into your surgery.” And the answer to that problem was, “You’re not tolerating the immuno-suppressant. We’ll change it.” They changed it. The diarrhoea stopped and I can honestly say I’ve been well ever since.
 

A few people said that, after recovery, any ache or pain they’d had worried them because they’d thought the organ might be rejecting. All patients who have a transplant need to take some form of treatment to prevent rejection. This does not mean that rejection cannot or does not occur. However, it is far rarer than it used to be, and it is much more easily treated and reversed than in the past. Everyone who is prescribed transplant medicines must follow the treatment plan as closely as possible. The most common cause of rejection in modern transplantation is that the patient does not follow the medication treatment plan. Transplant patients are also monitored by a specialist doctor for the rest of their lives. Many of the people we talked to said they were taking less medication after the transplant than before but stressed how important it was to take the tablets as prescribed. Sometimes family members had also been instructed on the medication regime so they could support their relative in taking the tablets, especially at the start of their recovery.
 

Deepak was on more medication before his kidney transplant. His doctor explained why taking the...

Deepak was on more medication before his kidney transplant. His doctor explained why taking the...

Age at interview: 49
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

I remember the first few days my nephrologist [kidney specialist] said, “You have to come here every day.” And I said, “Oh that’s a bit of a bore.” And he said, “Well you don’t actually understand what’s happening here. You have received a foreign object in your body, which the body would naturally choose to kill, i.e. reject. Because it’s a foreign body and the body’s natural defences would try to remove it, like influenza or a flu.

What we’re doing is, with this medication, especially the anti-suppressant medication as well as all the steroids and everything else… interestingly before I was on a transplant, when I was ill, I was on I calculated about 28 different types of pills every day, including phosphates and calcium and everything else. After my transplant, I was hardly on five or six, which was quite a relief to be honest.

But he told me the anti-rejection drugs chemically fool the brain and basically tell the brain and the body, “This is an OK object. It’s not a foreign object. It’s okay to stay in the body.” Which is why they are extremely potent and actually toxic. Too much of the medication will cause even the kidney to fail, but also liver problems, heart problems. I know quite a number of people who have had kidney disease, who have had a transplant and then they’re on the anti-rejection drugs, previous no case of heart disease [clicks fingers], heart attack. And thankfully I’ve been spared of that.

So it’s a very fine balance between how much to give, too much can kill the other organs, too little will stop the kidney working. So it’s a very fine balance, which made me appreciate the medical profession all the more.

Long term, obviously one has to be on the medication for a long time, but as I said compared to pre-transplant, it’s nothing compared to it. It’s just a handful of medicines and that one takes depending on blood pressure, etcetera. But it’s a totally different lifestyle. The quality of life is transformational. It’s just the one word I could use.
 

Many people said that, as they’d got better and stronger, they could do more of the things they’d done before getting ill (see Everyday life after the transplant). Several said they still got tired fairly easily but were much better than before the transplant.
 
A few people had had minor infections after the transplant and these had been treated. One woman, who’d had a kidney transplant, had become anaemic and took iron tablets as well as her anti-rejection medication. A couple of people said they’d been diagnosed with diabetes later in life. They took medication for this and also looked after their diet.
 
Some of the people we spoke to talked about having health problems several years on from the transplant, possibly as a result of their medication. Several said their medications had had an effect on their kidneys and they might, one day, need a kidney transplant. One woman said she’d had several problems, including asthma, difficulties walking and took medication to control her epilepsy, but these were ‘a small price to pay’ in order to be able to do all she could now do. At first, Helen had felt very conscious of the huge scar on her chest but found that, with liberal use of Vaseline, it had become almost invisible. She said that she’d been disappointed that, because of her anti-rejection medication, having children had been too high a risk for her to take.
 

Justine felt much better after the lung transplant and was home after three weeks in hospital....

Justine felt much better after the lung transplant and was home after three weeks in hospital....

Age at interview: 37
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

The next time I woke up was amazing. I felt like I could breathe for the first time in years, when towards the end every, every breath was a struggle. Everything I did, I needed people to look after me, wash me, clean me, I couldn’t do anything for myself.

And I was waving my hands in the air going “Whay, I’ve got new lungs, I’ve got new lungs.” I was so excited and what happened after that is just incredible. Within three weeks, I was out of hospital after being ill for ten years. And living in the hospital for six months, literally three weeks later I was out in the real world, living my life without the oxygen, without my wheelchair. And starting to rebuild who I was as a young girl when I was 20, 21.

I did have some struggles after my transplant. I got shingles and I got a virus on my lungs called RSV that unfortunately damaged my lungs. So today I’ve got about 60% lung function. But I’m still so grateful, it’s so much better than what it was. Yes, I still do get breathless and struggle sometimes, but I accept that.
 

 

Sue has been in and out of hospital since her liver transplant. She has problems with her lungs...

Sue has been in and out of hospital since her liver transplant. She has problems with her lungs...

Age at interview: 45
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

I have been back and forward to the hospital many times with pneumonia, lung disease and everything else, because I’ve had everything wrong with me. Because I’ve got no immune system. But my best is to say, “Don’t wallow. Just get on with it.”

My lungs don’t work anymore and also I’ve just found out that my kidneys are going. They haven’t worked for, since I had my first liver transplant, because I couldn’t wee. But they did improve a bit but they don’t now. But, at the moment, they’re not working at all. So I’m under the [name of] kidney unit in [hospital name]. But I just want to say, if you’re waiting for a transplant, don’t worry about it, you’ll be alright. And don’t wallow, just get on with life. That’s what I always say to people.
 

 

Linda was ill for a while before being diagnosed with blood cancer. The chemo and some infections...

Linda was ill for a while before being diagnosed with blood cancer. The chemo and some infections...

Age at interview: 51
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

About a year and a half ago, not last summer, the summer before, I took ill again. This time they thought I had irritable bowel syndrome. I was rushed into hospital and that’s what was diagnosed.

However, a few, well it was actually two months later, I was seriously ill. I phoned the transplant co-ordinator [specialist nurse]. I told her that I had been taken in and diagnosed with IBS. I told her my symptoms. She spoke to my consultant surgeon and he told me to go straight up. So I spent about three days in hospital going through a series of all sorts of tests and, as it turns out, I had blood cancer.

Apparently, one in ten transplant recipients will get blood cancer I was told. And it was in the papers recently, it’s a 50'50 survival rate. So I guess I’m pretty lucky. Because I then had to go and go through chemo, which I didn’t take to very well. And I took all sorts of infections, and was really quite seriously ill. I think it was touch and go a few times according to my family and doctors.

However, last July I got the all clear. And I’ve had two check-ups since and they’re all clear. I’m due another one in March, which I’m sure will be all clear because I feel absolutely brilliant right now.
 

 

Helen felt upset that she couldn’t have children because of the medications she was on. They...

Helen felt upset that she couldn’t have children because of the medications she was on. They...

Age at interview: 39
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

I have been quite upset. I’m alright, but I have been quite upset about the fact that I can’t have children. Not physically, physically I could have them but it’s the drugs I’m on, which are not tested on pregnant ladies. So CF’s [cystic fibrosis] kind of out of the way a bit, healthy lungs, you know. I mean I would have never have considered it before when I had CF because I didn’t know what was happening to me. That was completely out of the question.

But I did think now, oh maybe I’ll be alright. But when I spoke to my consultant about it, he did say, “Well yeah, physically you could. But we wouldn’t risk it because there could be severe damage to the baby. There could be minimal, or we couldn’t tell you, so we’d rather you didn’t take the risk.

And that was quite hard. I think a lot of that’s to do with the fact that I’m, you know, I’m late thirties now so that’s my time run out really. And that was quite difficult.
 

Jill said she’d had some side effects from her medications, including mouth ulcers, hair growth and cold sores, but had been taking her tablets for over twenty years now. Indeed, several people had been taking anti-rejection medications for over fifteen over twenty years and continued to be well.
 
Two of the recipients we interviewed had had rejection several years after the transplant.
 

Sue’s liver rejected over ten years after her transplant. She had a second liver transplant in...

Sue’s liver rejected over ten years after her transplant. She had a second liver transplant in...

Age at interview: 45
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

In 2006, in 2005 sorry, my liver was rejecting. I didn’t know at the time and I thought, “Oh here we go, I’m going to die.” Because I didn’t really want to die because I was enjoying life so much. So in 2006 in, in July, I went into the [hospital name] to be assessed for a second liver transplant. And they told me that I would be having one.

I felt fine the second time. I weren’t nervous at all. In fact I wanted to go out and take the dogs out straightaway. But I’m not allowed out because I had to wrap up warm. And then about a week later I’d got in the car and drove it.

So for someone who’s just come out of hospital after a liver transplant, is there any message or advice you would give?

After a liver transplant, you’ve just got a normal life and you’ve got to carry on with it. And don’t look back because you’ll be alright. I’ve seen plenty of people not survive, but if you put your mind to it, you will.

And that was in 2006?

Yeah.
 

 

A few years after his transplant, the kidney started to reject. Malcolm had heart surgery and...

A few years after his transplant, the kidney started to reject. Malcolm had heart surgery and...

Age at interview: 65
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT

They did the transplant and they said it worked fine. It began to work as soon as it was put into my body, right on the operating table. And they said it was an excellent match and everything.

However, after a few years, the blood results were not so good. The creatinine started to go up. And they said it looks like you’re having some sort of a long term slow rejection. So they gave me various treatments and different types of drugs, methyl prednisolone, drips and things, which were really quite powerful drugs, but none of them stopped the deterioration. I even had a plasma exchange, none of that cured the problem.

And then, by 1987, my kidney actually packed up. But in that same year I had to have a triple bypass as well. So I had the triple bypass in 1987, then I had, I went back on dialysis towards the end of 1987. And I was lucky enough in 1988 to get another organ from an unknown donor. That was in ’88 at Easter time.

But even in the short period I was on dialysis, I was on something called CAPD, which means continuous ambulatory peritoneal dialysis, even then I was cycling to work. I was cycling twenty miles a day on my bicycle. I was taking my bags of dialysing fluid with me. I was dialysing in the university where I was teaching and, in general, I always felt pretty good because I’ve always kept myself very fit.
 

All of the recipients we interviewed had attended regular follow up appointments. These had been very frequent immediately after the transplant but, over time, had lessened. Several said they now attended follow up every three months. One man attended every two months and one woman said she went every three to six months depending on whether there’d been any concerns.    
 

Janice, who had a kidney transplant and has been well since, now has follow up appointments every...

Text only
Read below

Janice, who had a kidney transplant and has been well since, now has follow up appointments every...

Age at interview: 43
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT

Follow up care now is once every three months. And that is just a blood test, weight test, and blood pressure, you know. Just have a look at, they sometimes do skin checks, because I don’t know if you’re more likely to get cancer. So they send you to the skin clinic, diabetes clinic. I’m not diabetic but they check for all that, you know. We’ve had no problems at all.

Emotionally, most people felt fine after the transplant. They were able to do so much more than before, even if they did still get tired. Feeling well physically had helped them feel well emotionally. Some joined support groups where they could talk about their experience with other people who’d had a transplant. A few people, though, became depressed. Both Diana and Cheryl had had a heart and lung transplant and found that the enormity of what they’d been through struck them afterwards.
 

Four months after her transplant, Diana felt suicidal and wondered if she could keep taking all...

Four months after her transplant, Diana felt suicidal and wondered if she could keep taking all...

Age at interview: 54
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

I think the kind of emotionally processing, what I’ve been through, it partly hit me shortly afterwards. I think I felt the four months between the transplant and the point at which I was recovered after the, no, the four months after the transplant, that was my worst emotionally, and I went through very bad anxiety. But my mood went crashing down. Because I remember now I got very, very low at one point, when I was being very sick, I didn’t think I could do it.

I didn’t think I could keep going on the medication. I thought I was going to have to stop. And I felt quite suicidal at that point. I was on high levels of steroids, which I was told caused mood swings. But I actually was suffering from clinical depression. I was suicidal. I couldn’t sleep. I stopped eating and I just felt absolutely dreadful. I don’t know how long it was for, and my husband was trying to support me during that time.

On looking back and as a psychologist, I think I should have, they should have really taken it seriously and either given me anti-depressants or psychological help of some sort. But it was kind of the shock of it all. And I was kind of grieving my old life and having to adjust to this new life, with this new role and not being disabled any more. And being well and who was I? And having someone else’s organs inside me. All those things, that was very, very hard.
 

 

A year after her transplant, Cheryl felt dreadful and didn’t want to see anyone. It took her...

A year after her transplant, Cheryl felt dreadful and didn’t want to see anyone. It took her...

Age at interview: 52
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT

I went to bed this night, got up the next day and I could have committed suicide. I felt dreadful. Now when you have a transplant, you are warned that you do have a bit of depression because of everything that you go through. Mine happened bang on a year after my transplant and I couldn’t believe it. I didn’t want to see anybody; I didn’t want to know anybody. 

The only person that really came to see, that I allowed in were my Mum and Dad. My daughter was here anyway. But my friends I wouldn’t have in. I didn’t want to talk to nobody. I cried. I didn’t know what had hit me. I’ve never ever been like it in my life. I went up to the [hospital name] for my check-ups. They wanted to put me on anti-depressants, and I wouldn’t go on them. I says, “No. I’m doing this.” And it took me three years to get right again.

Now it’s not nice. But it’s something you have to go through to get to the next step because, well for me and my point of view, you have to go through stages to get to the very end. And that’s what I did. And I went through the stages. And I took it on and whatever I got thrown at me, I took it on and I spat it back and then some.

I got, yes I got infections. I got other illnesses. I got flu’s, you know the normal things. But the one thing I never got, and touch wood I never have, and that is rejection. I have never rejected once. That’s how I know I’ve got good organs in my body. And I thank my donor for that. And I thank her every single day.
 

Liz said she hadn’t received any counselling at the time of her kidney transplant but, many years later, felt that her transplant had contributed in part to the breakup of her marriage.
 

Twenty years after her transplant, Liz became quite anxious. She eventually left her marriage....

Text only
Read below

Twenty years after her transplant, Liz became quite anxious. She eventually left her marriage....

Age at interview: 40
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT

I never received any counselling when I had the transplant, and it did have an effect on me because I’m such a go-get, a go and get it person, that anything I was worried about, well it doesn’t matter because I’ll go and do this. And I’ll go and do this and I’ll have this, and I’ll have the children. I’ll get married and I’ll do a job.

And suddenly last year, I mean last year I was 40 and I was 20 years with the kidney. I wasn’t worried about being 40, that’s irrelevant. But it had been 20 years with the kidney and suddenly it all hit me. And, as soon as the 1st Jan 2010 hit, I felt this big weight coming down on me and really worrying about things.

I’d started to feel unsettled for quite a while. And I didn’t know where to go with it. I found solace in my transplant friends, but I was trying to hold things together in my family network. And I felt a lot of pressure that I should hold things together, obviously for my girls, for my husband. Being a wife, being a mother. Being all the things that I needed to be, but I felt in my heart of hearts, I wasn’t being who I needed to be.

And it wasn’t planned but I did meet somebody else, and I made the very difficult decision in a way that I wanted to start again. It wasn’t easy at all. I do believe that a lot of it is to do with my transplant, and obviously a lot of it is to do with me as a person. I have no qualms about saying any of this because I think it’s important that people realise that one isn’t infallible. 

Now I see a much brighter future. I’m not so worried about everything. I think we all worry about dying and leaving things, I think that’s just natural. And when something’s happened where you’re facing your own mortality, you’re much more aware of what could happen. And especially if you’ve nearly been there. For me, having the transplant has been a life changing experience in so many ways. And it’s realising I think that life can change even when you think it’s all settled. Not being afraid about it. Seeking guidance if you need to. And enjoying what you have because, in the end, you’ve been given a second chance whereas many years ago you wouldn’t have.
 



Last reviewed May 2016.
donate
Previous Page
Next Page