Holly - Interview 08
More about me...
At the age of 17, Holly had what she thought was a sickness bug. This seemed to last longer than she’d expected and, when she went to her local surgery, her GP confirmed that it was a sickness bug. She was sent home with routine advice. Her illness continued and, over the Christmas holidays, she started to feel very unwell. Holly could not visit her local surgery as it was closed, so instead went to an emergency GP. Here, she had her blood pressure measured and was told that it was worryingly high for someone of her age. The GP sent her straight to hospital and she was admitted to the assessment ward where she had various tests, including a kidney scan.
On that same day, Holly was told that her kidneys were failing and she would need a transplant. Holly and her family were shocked and she recalled how the diagnosis ‘hit us like a ton of bricks’. She remembered how the doctor was very blunt, did not explain much and then left the room. On reflection, she believes the doctor should have taken more time and been much more sensitive.
Holly was taken to the intensive care unit for the next couple of days and then transferred to a hospital with a specialist renal unit. Here, she was put on dialysis and doctors took the time to explain more and answer her questions.
Once stabilised, Holly’s name was put on the kidney transplant waiting list, and she was given dialysis three times a week for three hours each time. During this time, Holly tried not to dwell on the transplant too much and got on with life – she finished college, went to university and became heavily involved with the charity, ‘Live Life Then Give Life’. This is an organisation that aims to save and improve the lives of organ and tissue transplant patients in the UK (http'//www.lltgl.org.uk/).
Holly described this time as difficult because she constantly felt unwell with nausea, breathlessness and tiredness. Her diet was also restricted. All her friends were going out and socialising but she was unable to because of her condition. However, her friends were very supportive and she occasionally joined them for short periods of time on nights out.
Holly could not make many plans during this time because she didn’t know how well she would feel from one day to the next. She also didn’t know when she would receive a call for the transplant.
After 3½ years of waiting, Holly received the phone call to say a donor kidney was available and she may be able to have the transplant. Holly described how shocked and emotional she felt when she got this call and could not speak. On the way to the hospital, she felt a mixture of emotions' she was excited and happy about the potential kidney transplant and how it would transform and save her life. However, she felt very sad because someone else had died and their family would be grieving. Once at hospital, Holly had dialysis, various tests and, eight hours after receiving the call, transplant surgery.
It took a while for the new kidney to settle and start working. Now, though, Holly is proud to say that her new kidney is working more efficiently than she’d ever expected. She can live her life normally and goes for check-ups once every three months. Holly works for and has become a trustee of the charity, ‘Life Live Then Give Life’, and helps raise awareness of organ donation and kidney transplants. She has given talks at schools and hospitals and has appeared in newspaper articles and radio shows. Holly explains how she takes every opportunity to raise awareness of organ donation because of the ‘great difference it made to me and what it could do for other people’.
Aged 17, Holly went to hospital with what she thought was a sickness bug. She was told her...
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.
Holly waited over 3 years for a transplant. She felt drained and nauseous on dialysis. She had...
I went straight onto haemodialysis, not using the fistula because that needed time to mature. So I had a central line in my neck, and I went straight onto dialysis. And I was told that I would need that until I had a kidney transplant. So I’d need it three times a week, four hours at a time, until a kidney became available, which was obviously a huge, huge shock.
My mum and dad actually got tested to be donors but they weren’t suitable. My brother offered to be a donor but he was just about to get married and so I didn’t want to put that pressure on him. I was put on the transplant waiting list after I was stabilised, and that was six months after I started dialysis. And I waited for three and a half years for my transplant.
While I was on dialysis I was pretty ill. Feeling nauseous all the time. Feeling tired, just general day to day things that people take for granted I couldn’t actually do. I couldn’t walk up the stairs without getting out of breath. I managed to carry on with college work, and my college were understanding about it.
And I went to university. Luckily my university lectures weren’t full time so I was able to carry on with that and I got my degree.
And at the same time as I was about to go into my last year of university, I got my call for transplant in October 2008. And it came as such a huge, huge shock. I’d been waiting three and a half years, and you kind of put it to the back of your head. You don’t really like to think about it. Because obviously you know the circumstances of you getting that call is devastating for another person, another family out there. So it’s a mixture of emotions when you get the call. You’re happy that you might have a future, but you’re also sad that someone has had to die for you to receive the gift of life.
Holly cried when she got the call and handed the phone to her dad. The journey to hospital felt...
It was three and a half years down the line and I was in, I remember the exact time and place. And I was in Halford’s car park getting the windscreen wipers changed on my car. The call came through on my mobile and it said no number. So I just picked it up and said, “Hiya.” Really friendly.
And the person at the other end of the phone said, “It’s the transplant co-ordinator [specialist nurse] from [name of] Hospital. We have a kidney for you. We think that it might be suitable for you. Can you come here straightaway?” And I just burst out crying and I couldn’t speak on the phone.
Thankfully that my dad was with me and so I passed the phone to him. And the transplant co-ordinator explained everything to my dad and my dad was able to tell me what was happening as I wasn’t in the best frame of mind at that point.
So this was half three in the afternoon, and it was actually a day that I was due for dialysis. So first of all they told me to go to my dialysis session and then go to the hospital. But then I later received a phone call saying, “No, come straight to the hospital. We will give you dialysis here.”
The journey to the hospital only took twenty minutes but it felt like a lot longer. Obviously my thoughts were of my future and what I might be able to do, like I’d hated, while I was on dialysis I couldn’t make future plans. I didn’t how I was going to feel tomorrow let alone in six weeks time. So I couldn’t make future plans.
So in my head I was thinking of all these things that I might be able to do and I might be able to plan for. But then I was thinking about the other family that had either received a phone call or was by somebody’s bed and they’d just lost a loved one. And that they were going through a whole load of emotions that were completely, a different set of emotions to mine.
So it was a mixture of emotions, and the journey only took twenty minutes but it felt a lot longer.
Holly expected it to be busy when she got to the hospital. Instead, she waited for an hour before...
That night, the transplant took place. It wasn’t what I thought it would be. When we got to the hospital I thought it would be all hustle and bustle and people running around after me. And we were just put in a waiting room for about an hour. No-one really spoke to us, told us what was happening. I had dialysis and the various tests took place' cross-matching; blood testing; tissue typing, and then eventually I was told that it was definitely going ahead.
So I went to theatre, five and a half hours later came out of theatre. Greeted in recovery room by my mum and dad and the doctor. And the rest is history.
Since then, I spent three weeks in hospital. It wasn’t plain sailing at first. It took ten days for the kidney to start working and kick in properly. But I was released three weeks later and not looked back since.
Holly found it helpful talking to other people who had been through something similar. She now...
I was diagnosed in 2005, and I became an advocate in 2006 for ‘Live Life then Give Life’. And it wasn’t just so that, I wasn’t just being selfish so that I would get my call and I would get my transplant. But it was just to help other people get their second chance at life, to make sure that people signed the Organ Donor Register.
The statistics then were 400 people die every year waiting for a transplant, and now it’s a thousand people die every year. I mean that’s just in four years that that figure has changed by 600 people extra dying a year because not enough transplants are available.
So I think the figures really hit home, and I wanted to do something about it. And even if I’m a very small fish in a very big ocean, but even if I could just get one more person to sign up a year, then that would make a difference to me. That would be an improvement to me.
Yeah. And you mentioned you found it helpful speaking to other people on the internet? What kind of questions and support did other people in a similar situation give you?
They gave me the advice was just be positive basically. They said the same thing. They said, be positive and not sit back and not think about it too much.
I mean I would ask questions, like medical questions about my treatment. But then people on the forums or people on the internet would ask emotional questions as well. And there was always someone there to answer the questions, whether it would be through ‘Live Life then Give Life’, through the Kidney Patient Guide, which I found really useful, that’s a forum on the internet. There was always someone there to answer a question. There’s always someone at the end of a telephone, so just talk to someone and don’t just sit on your own and worry about things.
Holly spoke to the specialist nurse and then wrote to the donor family. It was the hardest letter...
I have seen my transplant co-ordinator [specialist nurse] once since my transplant. No twice sorry. She came in to see me a couple of days after my transplant to make sure that everything was going well. And then I saw her when I spoke to her about writing to my donor family.
They obviously say that you can know details about, strict details about your donor. And then the option is there for you to write to them if you want to write to them. So I was told the age of my donor, the sex of my donor, and that was it.
And I decided that I would to write to the family and obviously express my thanks. I mean ‘thanks’ is a small word that really doesn’t come across as meaning much. But yes it was the hardest letter that I’ve ever had to write. And to write down in words how thankful and how grateful I am for what their family member did for me was really, really hard.
Yeah. And you then wrote that letter
Gave it to the transplant co-ordinator.
Yeah. I wrote the letter to my donor family and there’s obviously strict guidelines on what you were allowed to put in a letter. I just signed it from [name]. And I gave it to the transplant co-ordinator and then they post it on. They check it. They obviously have to read it and make sure it’s suitable, and then they post it on. And then it’s up to the donor family if they write back to you.
Yeah. And did you hear from them or?
I didn’t. I didn’t hear back in letter form. But the transplant co-ordinator rang me and said that the family had received the letter and that the family had rang the hospital and said how pleased they were to receive the letter. So I didn’t actually get a written letter back but I know that the family did receive it, and that they were pleased with the letter, which is nice to know.
Holly found out who her true friends were when she had kidney disease. They would always invite...
I’d say that you definitely know who your true friends are when something so dramatic as being diagnosed with such a chronic illness happens. You do find out who your true friends are. And they will accommodate your needs. Whether I was going out or not, they always used to let me know that they were going out, and that the invite was open. They never stopped inviting me.
Obviously I didn’t have as much energy to do what I wanted. But I would make the effort to go out, and say they’d be out for a few hours, I’d just go for half an hour, make sure I saw them and then came home.
Obviously the diet restriction that comes with kidney failure, low salt, low potassium low phosphates, that was, eating out wasn’t great. And only being able to drink 500 millilitres of fluid every day, that sort of affected my social life as well. But obviously you do find out who your true friends are by that happening.
I’d say talk to them, talk to your friends about it. Tell them that, make sure that they understand that you’re not being a pain, that this is a serious problem and that they need to be a bit more understanding and a bit more sympathetic to you basically.