Janice - Interview 05
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Janice received a kidney from her older brother in 1999, when she was 31. Growing up, she said she had always been more tired than other people. Through her twenties, she become increasingly lethargic and, around 1996, was no longer able to work. She was also having rashes on her body, looking very yellow and feeling unwell all the time. For two years she had no diagnosis. On one occasion, however, her GP referred her to hospital, where she stayed for two weeks. Tests showed that her kidneys had failed and she was given emergency dialysis. Once she improved slightly, she was put on normal haemodialysis, which she had for eight or nine months. This is a method for removing waste products such as creatinine and urea, as well as free water from the blood, when the kidneys are in renal failure.
While on dialysis, Janice said she was too ill to do very much. She stayed at home all the time, hardly ate, and became very thin and depressed. During this time, her two brothers and a friend offered to donate one of their kidneys to her. Her older brother was a compatible match and, in April 1999, Janice had a kidney transplant, aged 31. Leading up to the transplant, Janice said she felt guilty because her brother, who had so far been healthy, would be going through an operation. She felt particularly guilty after the operation when he was in pain.
Janice was in hospital for two weeks and recalled that she felt well again almost immediately. She said her brother never talks about this event and prefers to get on with his life. He is well and healthy. She recovered well too and, since then, has had a set of twins. She said she conceived soon after recovery and was monitored throughout her pregnancy. She had a smooth pregnancy until about 33 weeks, and her twins were born five weeks early by Caesarean section. Janice stayed in hospital for ten days for extra monitoring. The twins were, and remain, healthy and have no kidney problems.
For over ten years Janice has been well and now has follow-up appointments every three months. She has anaemia and takes iron tablets daily as well as anti-rejection medications. She is now able to live her life as normal and has returned to work.
Janice became more and more lethargic and could no longer work. She had rashes, vomiting and...
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.
Janice had dialysis for about eight months and then received an organ from her older brother. She...
I was quite ill on dialysis, until I got the transplant really. I had it from June 1998 and I got the transplant in April 1999, so about 8 months, 9 months.
Can you just describe what your life was like in that eight months?
I didn’t do anything. Just stayed in the house all the time. I was in and out of hospital, or if I wasn’t in and out of hospital, I was at home. I didn’t go anywhere or do anything. I didn’t eat. Was weighing eight stone.
Was there anybody at home to help you?
My ex-husband at the time had to take a lot of time off work. And my mother was, she lives in [place name] but she came up to help us there. But I was just, I don’t even remember it to be honest, I was so ill at the time. When I was on haemodialysis, they provide transport and I used to go, because I couldn’t drive. I was not well enough to drive.
Yes. So how did it come about then that you could have a kidney transplant and your brother would be the donor? How did that all happen?
Because they went through the options with me and they said, “If you can wait for one on the list,” which can take anything from you know, it could be straight away up to ten years, “Or you can ask a member of your family.” And I’ve got two brothers. They were both, and also another friend, and they all volunteered. And the one that was the best match was, and he agreed to do it. And he did it, yeah so. It’s amazing.
He was very enthusiastic about it. But we’ve never really talked about it much since. He thinks it’s better to be forgotten. I don’t think he wants me to be grateful for, he just wants to forget it really.
Yes. And leading up the transplant how did you feel yourself?
I just felt very guilty. But I wanted to become well again, and that seemed the only option really. You feel horrendously guilty, especially after the operation when you see them and they’re in so much pain. And that wasn’t very nice.
Janice felt better straight after her transplant. She and her family noticed she looked pink...
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.
Janice, who had a kidney transplant and has been well since, now has follow up appointments every...
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.
Janice could work and travel after the transplant. She'd never had so much energy. She had no...
I could do everything. I could work. I could go out again. Travel again because we used to love travelling. I couldn’t travel anywhere. Just went back completely to normal. And I hadn’t felt that well for years. Well I’d never felt that well really, because I’d never had a proper functioning kidney ever. So yes, just amazed that I had so much energy.
I don’t get so upset over petty little things anymore. You realise, you’re just grateful to be here. Much more grateful for things, just being alive really.
You have an appointment every three months and you take your drugs and that’s all there is really. And you don’t have to worry about anything else at all really, your diet, or anything. I have enough energy to work, look after the children and go out.
Janice had twins a few years after her transplant. She had a healthy pregnancy but felt very...
Having twins, well that was like a miracle really. We didn’t try for long, about three months, and I just fell pregnant with twins. I had a really easy pregnancy up till about 33 weeks when it did start to go a bit wrong then. The kidney starts to struggle and one of my daughters stopped, her growth slowed down a bit. I don’t know whether that was the kidney or not, and I started to have creatinine problems. And so they were born about five weeks early by caesarean section. Because they did think if it went on much longer, the kidney might, we might have problems.
And you said you were monitored more; you have a lot of scans?
Yes, you do. You have a scan every couple of weeks for growth and you have to have the kidney scanned for blood flow. Lots of blood tests [laughs]…. I worked up to 29 weeks. It was a very, very healthy pregnancy up until then; it was only in the last few weeks that we started to struggle a bit.
Yeah. And what did you notice when you were starting to struggle?
I was very, very tired. Very tired. And losing my appetite as well. And starting to itch, which is to do with toxins building up in the blood.
I thought that I didn’t stand any chance whatsoever of having children. So don’t give up hope of that. Because lots of people have children with a transplant, and it is just really the same as without really, as normal. You have no more other problems. It’s only because I had a twin pregnancy that maybe I did have few towards the end. But it’s very simple to have children with a transplant.
Both are, obviously they were small because they were early. But both were healthy and both were fine. And neither have any kidney problems whatsoever. They’ve been thoroughly checked and they’re both healthy.