Hi, my name is Charlene Henry, I am a 17-year-old girl and I am a kidney patient at the Royal Victoria Infirmary (RVI) in Newcastle at the Haemodialysis Unit. I became diagnosed with kidney failure in April 2004 just after my 16th birthday. I was rushed in on a Saturday morning with a leaking kidney and when I arrived at the RVI they diagnosed me with complete kidney failure. Later that day I was taken down to theatre for my Haemodialysis line to be put in. After I came back up I was officially a kidney patient! And didn’t I know it!
Sunday morning a Nurse called Julie came into my room with a large machine so she could attach it to my line, which was coming from my chest. That day I was dialysed on that big machine and I was so hungry because I hadn’t had anything to eat since the Friday, so I asked if I could have a McDonald’s? But Julie the Nurse said I was not allowed chips, so I asked for some beans on toast, but again I was not allowed beans either. To cut a long story short she told me all the things I was not allowed, like chocolate, crisps, potatoes, vegetables and everything else that had Potassium in. I was so upset; everything was just coming too fast for me. Everything I had ever known was gone. I had to listen to whatever the Doctors told me, because if I didn’t then I would be more ill than I was already.
I was in Hospital for two weeks and I lost a lot of weight because I couldn’t eat anything that I liked and most of my weight was fluid to start with. Before I was diagnosed. I was seven stone and when I dialysed I went right down to four and a half stone.
After being in Hospital for two weeks I was allowed to go home and back to school, back with all my family and friends. I came out of hospital on the Saturday and went back to school on the Tuesday, I would have gone back on the Monday but I had to go to hospital to be dialysed. Even though I was on dialysis I got through year eleven and my exams and I am now studying ICT at 6th Form in Kenton School.
Being on dialysis is sometimes very frustrating because you have to watch what you eat and drink constantly. Having to do this is very hard for most people as they might only have 350ml to drink a day and they might not be able to have treats like some other children? We all go to dialysis 3 times a week, where there is a morning dialysis session and an afternoon session. I am on the afternoon session for dialysis and I go there for about 1.45pm so that I can be there ready to get on my machine. I am normally on my machine for about 3 and a half hours unless I have extra, and I have to be on my machine for as long as it takes to get the extra fluid off. I hate being on my machine for longer than 3 and half hours, because I think that length of time is quite sufficient for me. A lot of the children at my dialysis unit find it hard to stick to their fluid intake so they normally do more dialysis to take the extra off.
There are nine of us having dialysis at the moment, but there could possibly be more children there if anyone else ends up with kidney failure? The children on my ward are: Duncan, Catherine, Steven, Amy, Sarah, Charlotte, Alice and Peter. There is also a little girl who comes in for Plasma on our ward once every two weeks. She is called Hannah and a Plasma machine is like a dialysis machine, but looks a little different and it does a different job.
Having to go onto dialysis 3 times a week is very tiring, as I have to go to 6th Form then to dialysis. I only have 4 days off from dialysis and I think they are the best days of the week.
I am comfortable with being different to everybody else, but some kids at the Unit are not. Some of them get really upset because they are different, but my motto is: “What’s the point in being sad when it is always going to be there until we have a transplant”?
When I go to dialysis the Nurses treat us with the utmost respect and we are all treated individually, because we all have different problems apart from kidney failure. Sometimes I love to go to dialysis, because I love to see the Nurses. I couldn’t really imagine life without the hospital and the Nurses, because they have been there since day one and I have so much love for them all. Dialysis isn’t all about being there to stay alive; it is about love and friendship too. We all take care of each other and are there whether we have had a transplant or not.
Talking about transplants, I have been on dialysis now for 2 years and four children from my Unit have been transplanted in that time and they are: Asia, Jasmine, Craig and Callum. As I write this, Callum is downstairs in recovery in Ward 3 after just having had a transplant today. Some children get their transplants from Parents or other members off the family, but for others like me, we have to wait on a Transplant List for a match to come up. This match is like numbers being the same as your kidney and what happens is: When somebody dies, if they have the same kind of numbers as you (and they gave their consent when they were alive - ed.), you will receive a phone call asking you to come into Hospital as there is a kidney waiting for you. Being on the list doesn’t mean you are at the top or the bottom; you are anywhere, because you can only have the kidney if it is a match for you. I have been on the list now for about 6 or 7 months and I always jump up when the phone rings, because I get a funny feeling in my stomach thinking it is finally happening to me.
Ever since I have had kidney failure, I always wanted a kidney, but for some children at the Unit that is not possible. There are some reasons I do not know about, but it makes me sad to know that some lovely children who may never have the chance to lead a normal life? I ask myself sometimes why God has dealt us these cards, when there are so many bad people in the world who are healthy?
Life on dialysis is not too bad for me, but I do have my ups and downs. My sister Danielle said: “If everyone carried a Donor Card there would be no one on the Transplant List, or there would be less people on the Transplant list waiting for anything like: Heart, Liver, Lungs and Kidneys.” I do believe this is true and I would love it if everyone could be on the list, but it doesn’t work like that, because life just isn’t like that and it isn’t fair. People say it is wrong taking Dead Persons organs! But I think of it as giving someone else another chance of life. I mean what real use do dead people need for him or her for when someone who is dying and needs a transplant could really benefit from someone’s organs being given to them? Nobody really understands until it happens to their child or someone in the family, they think it doesn’t concern them, but it does! They could keep lots of people alive if they just carried a Donor Card because one person could give at least seven children or adults the chance to live some kind of normal life?
Speaking as a kidney patient, I have made up my mind about having a live donor and a dead donor and my choice is to have a dead donor, because I couldn’t live with myself if anything should go wrong with the live donor who gave the kidney to me. I would feel so guilty and would probably want to give it back?
Overall I think that being on dialysis is very stressful at times, but if you are a strong person you would be able to get through it, but even if you are not strong, you would have to try to get through it, because no matter what, it is still going to be at the end of the day until you have a transplant. So whoever is on dialysis or not on dialysis and you are reading this, remember to stay strong, because luck is always around the corner and it might just be you having your transplant or a member of your family having one some day? So stay strong because I know what you are going through and I know how you feel, but keep your head up high and hope for the best like I do.
All of the Children’s names that I have put in this article have been asked for consent from their Parents and they have signed a consent form to make it official. If you need a copy of the consent form just contact the Haemodialysis Unit and ask for Vicky. She should be able to send you it.
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Last updated: 18 April 2008
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