Organ donation
Health issues after the transplant
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...
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...
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.
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...
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.
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....
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...
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...
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...
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.
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...
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...
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.
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...
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...
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.
Last reviewed May 2016.
Copyright © 2024 University of Oxford. All rights reserved.