Liz - Interview 27

Age at interview: 40

Brief Outline:

Liz had a kidney transplant in 1990, aged 19. The donor was her mother. Both she and Liz recovered well. Liz went on to have two daughters and to become a professional musician. She is a professor of music at the conservatoire she studied at.

Background:

Liz is a professional musician. She is divorced and has two daughters. Ethnic background / nationality: White British.

More about me...

Liz had a good childhood, did her ‘O’ levels and, at age 16, won a music scholarship to study in the local private school. There, however, she was bullied because she came from a less affluent background, and this affected Liz very badly. Over Christmas, she had a terrible flu and, in February 1988, woke up one morning to find she had a rash all over her legs.

Later, Liz was diagnosed with Henoch-Schonlein purpura, a disease of the skin and other organs that most commonly affects children. In the skin, the disease causes palpable purpura (small haemorrhages), often with joint and stomach pain. In a small number of cases, it can cause chronic kidney disease. Liz believes this and the streptococcal virus she later had, was brought on by the stress caused by the bullying at school. This virus is a type of pharyngitis that affects the pharynx, including the tonsils and possibly the larynx.  

Liz spent the next eighteen months in and out of hospital. By July 1989, she was very ill, often vomiting up to nineteen times a day. She managed to pass her ‘A’ levels and was accepted at a prestigious music school.

From the summer of 1989, however, Liz’s health deteriorated further and her kidneys were becoming less and less effective. Although she was supposed to start music college in September that year, her kidneys failed and she had to go on dialysis. Liz said, ‘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… 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.’

Liz had dialysis for nine months, the most testing time of all. Twice she had septicaemia (blood poisoning) and needed blood transfusions. Her father began tests to find out if he could donate one of his kidneys to her but these showed that he was unsuitable. Her mother was also tested, and donated one of her kidneys to Liz on 29th May 1990. Both Liz and her mother recovered well.

That September, Liz started music college and made up for the socialising and partying she had missed out on growing up. She also completed her degree, post-graduate studies and is now a professional double bass player. She is a professor of music at the college she studied at.

In 1991, Liz participated in the British Transplant Games and now competes every two years. She got married in 1998 and had two daughters. This was a big decision and Liz said both her children had to be induced. Both were and continue to be well. Liz also looks after herself and trains regularly so she can be fit enough to participate in the Games.

In 2010, however, Liz had problems in her personal life and she said that, despite going through a major experience such as a transplant, she had never had any counselling. Twenty years after her transplant, she began to realise the enormity of it and said, ‘I felt this big weight coming down on me and really worrying about things.’ She had felt unsettled for some time. Liz later met someone new and left her marriage. She felt that her illness and transplant had contributed to the breakdown of the marriage and benefited from the support of a counsellor.

Liz has follow-up care every three months and takes medication daily. She lives a full life and praised the support she got from her family, spiritual faith and music. She is also a trustee for Transplant Support Network, a nationwide network that provides telephone support to patients, family and carers of all solid organ transplants (http'//www.transplantsupportnetwork.org.uk/about.htm). 
 

Liz got steadily worse and her kidney function continued to deteriorate. She started dialysis at 18 and was very ill on it. She lost a lot of weight and had blood transfusions.

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.

Liz felt ill and tired on dialysis, one of the most difficult times in her life. She had it for nine months while her parents were tested to see if they could donate.

You were on dialysis three times a week?

Yes.

So what was the routine at that time? Were you picked up by an ambulance in the morning?

Yeah, an ambulance car. I was about 10 miles away from [place name], I lived in [place name]. And I was taken down Monday, Wednesday, Friday in the morning. And that became my routine really. I was very strict with my diet. I’m not quite sure how diets are now with dialysis patients, but I was very strict. I didn’t have chocolate. I didn’t have fresh fruit. I didn’t have coffee. I really stuck to the rules.

I used to feel terribly sick going down to hospital and I used to suffer terribly on dialysis. I found that, I think it was an acetate one didn’t work, so I had a bicarbonate one. I think at the time when I, you know, just awful things like if I was on dialysis and it was the time I was having my period, that would be terrible and I just felt absolutely drained.

How many months did you say you were having dialysis?

I was lucky. I was only nine months on dialysis. Yes.

And at this time did the doctors talk to you about having a transplant and,

Well my Mum and Dad were being tested. My Mum and Dad had approached the consultant and said, “Look, what can we do?” And being a parent myself now, I understand their frustration of, you know, “What can we do? Our daughters near the edge of death, can we do something?”

And so they were being tested but, to be fair, I can’t really remember a lot. I can only remember sort of dialysis, staying over, feeling ill. Extremely high temperatures and I always used to throw high temperatures on a Saturday when everyone’s relaxing at home, and off we’d go down to the [name of] Hospital again. And so yeah, it was just a very difficult time. Probably the most difficult time of my life I think, yes.
 

Liz had two healthy pregnancies after her kidney transplant and delivered naturally. She breastfed both her daughters, and praised the care she'd received.

It was a big decision to have children and I remember, I think only about five months after my transplant, the consultant sitting me down and talking to me about contraception and stuff. And I was like, “Whoa, hold on. I’m just starting music college. I can’t be doing with this.” But she made it very aware that, “Look, if you’re going to have children you may only have one shot, etcetera, this, this, this.” And everyone’s different. So I don’t want to go into details of what might have happened to me.

But obviously when I made the decision to get pregnant, it was very exciting. But, as soon as I told the hospital, it was like, “Okay, right this is what’s going to happen.” [Hospital name] have been absolutely fantastic. Their care has been outstanding. I couldn’t ask for any better. I went to an early pregnancy scan, that was checked. I had big “Transplant” written over my notes.

And I think actually, looking at other women, I had a very good pregnancy. There was always a risk that the baby could come early. I was told that. But perhaps as stubborn as I am, at 40 weeks I was still pregnant and I was kept in for two weeks beforehand because of the distance from the house round to the hospital. They didn’t want me having the baby at [name] Lane Services. So I was kept in and with [name], my first daughter, I was induced. They felt that it was nearly 40 weeks, that was time.

And I was induced on the Thursday night but [my first daughter] obviously is a little stubborn, like her mother, and she didn’t arrive until Tuesday morning. So that was 5 days in and out of labour, down to the delivery suite. I was determined as much as I could to have a normal pregnancy and birth. So I didn’t want a caesarean unless my life was at risk.

It was nearly there. I had to go to theatre, one last chance, and I managed to have [my first daughter]. I managed to have [my first daughter] normally. And I also breastfed [my daughter] for six months. It was difficult to make that decision. We were told well you know okay there won’t be any effects. And then we were told oh there might be some effects.

But we made the decision that she was past 37 weeks, and she was a good weight. She was 8lbs, and it was a wonderful feeling to be able to breastfeed my daughter for six months. And it was challenging as well. I got a huge urine infection and I had to come off breastfeeding for two weeks, so I had to go on a pump and looked like a milk factory. But hey you know, these are challenges, and to be able to do what other women did was very important to me.

And so I did it again with [my second daughter]. But this time they didn’t let me go five days. I was only seven hours with [my second daughter], but I had her naturally as well. And I breastfed her and she was slightly heavier at eight two.
 

Twenty years after her transplant, Liz became quite anxious. She eventually left her marriage. She had some counselling and now feels more positive about the future.

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.

Liz benefitted from talking to other transplant patients. They understood how difficult it was being ill and valued the 'extra time' they'd got after the transplant.

You’ve met other people who have had transplants. At what point did you start talking to other people and how’s that been helpful?

Oh straightaway. Straightaway there’s a camaraderie as soon as you went to the Games. You’re all there on the level, whether you’ve had a heart, lung, liver, kidney, anything. There are children there from 18 months to adults of 80. You’re all going or have gone through the same things. So no-one cares about your scars, you know.

Everyone knows that you’ve been to the brink of death and come back. And you talk about things generally; I think the main thing we talk about is, “Oh what tablets are you on now?” And, “Oh that scar? Well I’ve got this scar,” etc, etc. But it’s not a big thing. I think the main thing is we’re just so happy to all be together and we have a great, great, great time.

We’re very close, we’re a very close network. And when one of us goes, it’s a big loss. But it’s also a celebration of the extra time that they’ve had as well. And I’ve lost several people, several dear friends. But I have to remember that they had extra time like I have. And I’m just so grateful for that, so grateful for that.