Cheryl - Interview 24
More about me...
Cheryl was born with transposition of the great vessels. This is a congenital heart defect in which the two major vessels that carry blood away from the heart – the aorta and the pulmonary artery – are switched (transposed). Growing up, she said she often looked blue, had a pain in her left knee, and had to have annual check-ups.
Despite this, Cheryl said she had a normal childhood in many ways, enjoyed school, and then started work. Like most young people, she went out and had a full social life. She got married and, soon afterwards, wanted to have a child. At this stage, she was told by doctors that, if she wanted children, she should have them by the age of 23. She did not know that doctors were not expecting her to have a long life expectancy, information she appreciated her Mum keeping from her so she could live a normal, happy life.
Cheryl had a daughter at the age of 23. Around 1986, however, Cheryl started becoming increasingly unwell. When exerting herself, she would get extremely severe headaches. Around this time, she also had a blockage in her heart and needed a pacemaker. Two years later, the pacemaker had to be replaced because of a fault.
In 1990, Cheryl said she swelled up and collapsed. In hospital, doctors held very little hope for her but, when she started improving, they suggested a transplant. In 1991, Cheryl was assessed and told that, without a transplant, she was unlikely to survive more than eighteen months. She realised then how ill she was, started resting more and, reluctantly, using a wheelchair.
Cheryl’s health deteriorated and, soon, she became extremely weak. She said, ‘I lived in an armchair. I couldn’t feed myself. I couldn’t brush my own teeth, brush my hair, go to the bathroom. I couldn’t do anything. I had to be fed. It wasn’t a nice time for me because I’m very independent and it was one of them times where sometimes I wished, I just wished the call would come that I would actually have the transplant, because I wanted to get back to normal.’
Cheryl’s first call for a transplant came in 1992 but was cancelled because the organs were unsuitable. She was to have a further seven calls, none however leading to a transplant. Cheryl said, ‘Admittedly, I had eight cancellations. Now that is not a bad thing because I knew that they were waiting for the best organs, because I was having heart/lungs. They needed to be from the same donor, so I knew, because of all these cancellations, they were waiting for the best set of organs that they could have.’
In 1995, three years after waiting, Cheryl had a transplant, aged 36. Her daughter was now 13. Cheryl noticed almost immediately that, for the first time in her life, she had colour in her hands and cheeks. Shortly after the transplant, Cheryl had three seizures and was told by doctors that she’d had undiagnosed epilepsy. She now takes medication for it and it is well controlled. She also said her memory, especially of her daughter’s early years, is very poor. Her legs are also not as strong, her kidneys much less effective, but Cheryl felt this was ‘a small price to pay to be alive’ and said that her heart and lungs were ‘working fabulously’.
In 1996, exactly a year after the transplant, Cheryl felt well physically but the emotional impact of what she’d been through started dawning on her. For the next three years, she went through a severe depression, during which time she did not want to see any friends. She was also reluctant to take anti-depressants and, with hindsight, said it was a phase in her life that she had to get through on her own.
Since the transplant, Cheryl has been to Australia four times, swam with dolphins, driven a racing car and written a book about her experiences, called Absolutely (available at Amazon). She also did voluntary work in the local hospital for twelve years. She is now a volunteer for Transplant Support Network, a nationwide network that provides telephone support to patients, family and carers of solid organ transplants (http'//www.transplantsupportnetwork.org.uk/about.htm).
Two years before transplant, Cheryl couldnt feed herself, brush her own teeth or walk to the...
The two years before [transplant], I lived in an armchair. I couldn’t feed myself. I couldn’t brush my own teeth, brush my hair, go to the bathroom. I couldn’t do anything. I had to be fed. It wasn’t a nice time for me because I’m very independent and it was one of them times where sometimes I wished the call would come that I would actually have the transplant, because I wanted to get back to normal, what you call normal. But I also knew, like I said, they were waiting for the right ones [organs].
I think not being able to brush my own teeth was one of the hardest things because I brush my teeth three or four times a day. And that was hard but the hardest of all, for me being ill really was easy, the hardest of all was watching my family and watching the looks on their faces.
And you’ve heard that saying when you’re crying inside and yelling and screaming, that was me, because I wanted to tell it, you know, there was a smile on my face 24/7 because I wanted them to know that I was alright, and I was dealing with what I was dealing with, because it made me feel better and I know it made them feel better. Some days they had pitiful looks. I said, “I don’t want that. I’m fine. The transplant will come. While I can sit here talking to you as best I can and breathing, then I’m fine.”
I had 24-hour oxygen so there was no problem of me stopping breathing or anything, because I’d got that support. And I still tried to do things with my daughter; obviously a lot went by the way. She did dancing and my Dad was taking her to dancing classes which, it does upset you because you want to be a part of your daughter’s life. So them two years was very hard.
Cheryl had eight false alarms before she finally had her heart and lung transplant. She was...
In 1992 I got my first call up. Which was cancelled due to the organs not being perfect, not being good for me. They couldn’t use them. It was a risk but I was willing to take that risk. So I went up, and then I came back home again.
Admittedly, I had eight cancellations. Now that is not a bad thing because I knew that they were waiting for the best organs, because I was having heart/lungs. They needed to be from the same donor, so I knew because of all these cancellations they were waiting for the best set of organs that they could have.
The first couple of times, well I’ll say the first four or five, it was fine. It was fine because I thought, “We need good ones.” I’m sure it’ll be my turn. Then on one time I came out, because you always have to have an antiseptic bath, I came out of the bathroom and my Mum’s there and she’s looking at me. She said, “You better get dressed.” I said, “Why?” She said, “We’re going home.” I went, “No we’re not.” And we were. And the disappointment on my Mum’s face really got to me, oh I was so angry.
Not long after coming round, Cheryl saw her mother looking at her from behind a glass partition....
I remember waking up in the intensive care and I could see everybody. I was like in a big room on my own, and there was doctors in there and machines. And there was nurses running around and I’m just sat there looking. And this nurse turned round to me, and, “What are you doing awake?” But I’d obviously got the ventilator in. And they asked the doctor to come and see me and I was doing fine. And then I just looked to my left and my Mum was there behind the glass partition. She was crying. So I put my thumb up, as you know, as if to say, “Don’t cry.” And I’d always said to myself that the first time I saw my Mum afterwards, no matter whether there were a ventilator there or not, I would tell her that I loved her.
She didn’t cry for long because she was happy to see that I looked different. And her first words to me were, “Your lips are pink.” Because they’d always been blue. My cheeks, my nose, my lips, my hands, my legs, everything was blue. And I lifted my hand up. I remember just lifting my hand up and seeing my hand pink, which I’d never seen before. And it was a feeling of overwhelming surprise because I didn’t realise a transplant would change so much, so quickly. I knew why I was blue because of my oxygen levels and things and my illness, but the transplant just, it just changed it more or less straightaway.
Cheryl did many fun things after her transplant, like swimming with a dolphin. She wrote a book...
I’ve done a dolphin swim. I’ve done a helicopter ride. I’ve done a racing car ride, and it was amazing, it was awesome. I might be a bit dead below the waist but my God I’m not up here. So long as this part is working, I can get around every other way. I don’t care. And I’ve absolutely loved it.
And, like I said, I wrote a book to help other people. I work for another charity, for TSN, Transport Support Network, helping people that are waiting for transplants, which I absolutely love doing.
And to me, having a transplant is, it’s the best gift anybody can give you. You can’t get any better. There’s no other gift that can, you know, and I’m always thankful for that. And I’ll always be thankful for that.
And every anniversary, on my second birthday, I always have a flower in a special vase for my donor, with a thank you card. Without her, I wouldn’t be here today. And there’s a saying which I do believe in' “Please don’t take your organs to heaven, because heaven knows they need them here.” I believe in that.
A year after her transplant, Cheryl felt dreadful and didnt 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.
Cheryl urges people to register as organ donors. Having a transplant meant she could have a full...
In my eyes, it [organ donation] would be the best choice they will ever make in their lives. It doesn’t cost them anything, and it takes two minutes. It helps; it helps someone like me have a full life for whatever time I’ve got left, have a full life to be with my family. To see my daughter grow up. To do everything I’ve ever wanted to do. Without these organs, I wouldn’t be here today. So please think seriously about it. It won’t hurt you, it won’t damage you. It will give someone else that gift of life.
You’re leaving, you’re giving someone else the chance to live and live a normal life. And surely it’s got to give them food for thought. I’m a donor. I’ve gone back on the list. I’m a donor myself.
I would seriously think about it, think about if anyone in their family needed an organ, what would they do? Because that’s what every family fears, and it’s true. And it’s like I say again, please please, please, don’t take your organs to heaven, because heaven knows we need them here desperately.