Kidney Kids Scotland

Your Stories

We would be delighted to print any stories from anyone who would like to share their experiences with other people. It does help others to know that other people are going through the same thing.

Becca's Story

Hello, I am Becca. A pupil of Perth High School, S3. I think Kidney Kids has helped my family so much as my brother has kidney failure. My brother was in Yorkhill Hospital as he was relapsing, we were so far from home and we had no where to stay. My Mum asked the hospital if there was somewhere we could sleep but unfortunately they said it wasn't possible to stay in the hospital. Me and some of my family members had to sleep in the car. Thanks to Kidney Kids they gave my family and myself somewhere to sleep. My family are so grateful for the help the charity has provided my family, you have helped so much, means a lot.
Hope you have enjoyed reading my story and thanks a million to Kidney Kids Scotland

Jamie's Story

My name is Jamie and I am 7 years old. I was born with a very rare condition called epispadias. This means my urethra didn't grow properly. Although this was diagnosed when I was born, I didn't have my first operation until I was one. I was very little and I don't remember it, but my Mum and Dad tell me I was very brave and jumping around the cot very soon after the 3 hour operation.

I have had several further operations which have put all my tubes in the right place. The worst was the "Kelly" operation which took over 5 hours and afterwards was very painful and I had to take lots of horrible medicine. I was very scared, but everyone said I was really brave. I especially didn't like the tubes called catheters which they had to put in me.

Now every day I have to do exercises to try to strengthen the muscles around the tubes so that they will become strong enough for me to hold onto my wee - to be continent. I still have to wear pads to catch some of my wee when I can't hold on. I have to change these often. I can wee much better than I used to and the doctors think it will all be fixed in the end. Some people think it is funny when I have to wear pads but it is not funny.

Kidney Kids helped my Mum after we had moved to Scotland from Devon where I was born. They put us in touch with another family whose son had the same condition. Only after speaking to them did we find out that our travel expenses could be covered to Great Ormond Street. Kidney Kids have supported my Mum with trying to get treatment in Scotland as I currently have to travel every month for physio-type treatment (Biofeedback) to London. The machine is pretty cool - it is like a computer game. It can tell which muscles I am using and if I use the right ones, then I can shoot asteroids in space and make monkeys collect bananas.

My Mum says she has had very little support from professionals and it has been a "piecemeal" approach to getting the right kinds of information about benefits, travel costs, special products etc. She says she has found it hard to find out who can help. Kidney Kids made a big difference.

I sometimes feel different from other children because of the pads, but I am not and it doesn't stop me doing anything that other children can all do, which is lucky!

If there are other families who have a child with Epispadias or Bladder extrophy related conditions and would like to be put in touch with Jamie's family, please give us a ring on 01324 555843.

Ethan's Story

Hi my name is Ethan, I have Nephrotic Syndrome and I have to go to hospital quite often. I have written this to help you understand what will happen when you go to hospital and I hope that after you have read it you won't feel scared.
This is me going to hospital in my car. I usually feel quite excited, as I like visiting the cafe and shop at the hospital. I don't really feel nervous as all the Nurses and Doctors are really nice and because I am used to going I know that everything will be ok.
When we arrive at the hospital, we have to check-in and hand in my appointment card. I then have to wait in the waiting area for quite a while. There are plenty of toys to play with or books to read, but sometimes it is nice to take along something from home, like a games console to keep yourself amused.
I also have to have my height checked, to make sure that I am growing properly.
This is me getting weighed. Sometimes I have put on weight because of my medication.
Here I am getting my blood pressure taken. The nurse puts a cuff or band round my arm and it gets quite tight before it measures my blood pressure. This doesn't hurt but it can feel quite tight.
Usually I have to give a sample of my urine (wee). The Nurse gives me a bottle and I can go to the toilet to fill a bottle or container, which she will test. Sometimes I have to drink extra juice at the hospital so that I can do this.
This is the Doctor taking a sample of my blood. I know it sounds scary, but it doesn't really hurt that much, especially if you use "magic cream". This is white cream which the hospital can put on your arm, half an hour beforehand and it makes your skin go numb. Now I don't use the cream because I'm so used to it and I don't find it really sore anymore.

Ethan's tips - Don't look at the needle - think of something nice e.g. holiday/xmas - squeeze Mum/Dad's hand and talk to them
and REMEMBER -
IT'S OVER VERY QUICKLY

Notes to Parents/Carers

It is always a good idea to explain to your child what will happen at the hospital - so there are no "nasty" surprises and you can gauge how your child is likely to react.
Try to allow extra time before your appointment to explore the best parts of the hospital e.g. cafe and shops and sometimes the promise of a treat afterwards is a good incentive.
Expect delays - appointments are rarely on time - although there are toys/books and magazines it is quite a good idea for your child to take something to amuse themselves. with.
You may wish to take a drink for your child in case giving a urine sample is difficult.
If your child isn't used to needles/or is quite upset at the prospect of having blood taken - Emla cream is very good at numbing the skin. Although the hospital can provide this it is possible to get this cream and plasters from your G.P. allowing you to apply it before your appointment - This saves you time waiting at the hospital for the cream to work.
It is worth noting that you will have to apply the cream on a few different places - as you may not be sure that the Nurse/Doctor may have to make a few different attempts.
Emla Cream can be very effective in minimizing your child's fear or needles - but it can sometimes cause veins to recede, especially if their skin becomes sensitive to the cream and ironically this can make it more difficult to get blood.

Morgans Story

Morgan & Archie

Hi, my name is Morgan, I have been a patient at the Renal Unit sick kids Glasgow since I was two years old, I am now nine.

My favourite nurses are Bernie, Eileen and Jackie because they are always kind to me when I have to get my bloodpressure and blood tests done. I always get a happy face on my plaster or a pretty sticker for being good.

I have a special teddy called Archie. He came from Yorkhill and I got him when I went for tests to find out what was wrong with my kidneys. Archie and I found out I have a condition called F.S.G.S. this means that I have to go into hospital sometimes as my kidneys don’t work properly so Archie and my Mum always come along. The illness doesn’t go away so it is good that we have lots of help from the special nurses and doctors and all the machines at the Renal unit! The kidney kids have helped put in special people like the Psychologist and the special book to help us understand our illness and why we take our medicines. The good thing is I get to miss school and the bad thing is it can make you feel tired and unwell but Archie is always there to cheer me up!

Lots of Love Morgan and Archie