I was born with only one kidney that was a crossed renal ectopia with a solitary ureter from the left renal mass opening on the right side of the bladder also a rectovesical fistula.
I was given a colostomy at birth but reversed after 2 years. Back then they didn’t have colostomy bags my mum had to wrap a nappy around my stomach and as you can imagine there was a lot of accidents and I was only little so I looked funny with two nappies on.
I was lucky to be alive as they say I’m the only one with this problem. I had problems through my childhood but I managed.
I have bowel explosions a bit but I manage it myself if it’s not too bad. I love corn but it goes through me and it won’t stop working. I still have it but I’m just careful with it. When it works a lot the skin breaks around the stoma but usually it’s not too bad. I don’t see a stoma therapist at all but if I got problems the dialysis nurses send a stoma nurse up.
I was teased a lot because I had accidents. I hated primary school and if I see any school kids I know, I won’t go up to them unless they come up first. But when I got to high school things changed. My mum sent me to a different school where no one knew me. I made heaps of friends and when I went into hospital at 15 they all came up.
When I was 15 years old which was in 1988 I had my second big operation which I had to have a hysterectomy and then they brought out a colostomy temporary but I ended up having heaps of bowel obstructions so now I have it for life which is better. I also ended up getting a blood clot in the lung and ended up losing heaps of weight. I also ended up going down to 45kg. I had to learn to put a gastro tube down to my stomach at night time.
I was doing that until I was 20 years old and I was going to school , college and then to work. My schooling didn’t go so well because I had a learning disability but I decided to go to business TAFE.
They weren’t going to take me but my mum spoke to them and said if they gave me a chance I would do really well. They decided to let me do the course for a year instead of 6 months. I ended up passing with high marks and also got an encouragement award. I got a job at Franklin head office at the age of 19.
My learning disability started at an early age. My mum and sister were fantastic they did everything to help me by teaching me all the time and taking me to people to help me. I wouldn’t have got a job if it wasn’t for them. I didn’t like reading because it was so difficult but when I went overseas for the first time my sister and I were in a bookstore so I decided to buy a book. When my sister saw me start reading she started crying and rang mum. Now I can’t stop reading. You just have to fight and not let anything stop you.
After I got better I decided to go overseas to the UK with my sister for a month. I had a fantastic time. I didn’t have any problems at all. When I came home I had no problem except pain in my kidney area which was normal and bladder and kidney infections and kidney stones. I worked for 11 years at franklins head office in Brisbane doing data entry until I decided to take the redundancy package when Franklin closed down. I did temp work for a while and then my sister and I decided to go to Europe for my 30th and her 40th. We did a bus tour around Europe for a month and then went to Switzerland for a month to see our cousin who lives over there. We had a ball. We took a Video of it so it’s good to look at it. I was lucky to get home because I started to get really sick. I had a blockage which they fixed but then for about 8 years I had really bad pain which was from big stag horn stones. They did get rid of them so many times but they kept on coming back. My kidney grows the minerals that make up the stones. I’m on very strong pain killers because the pain is really bad. Last year my kidney decided to pack in. It was very good kidney it lasted for 39 years which my doctors says it lasted a long time.
I started dialysis last October and march the 27th this year they removed my single kidney. I’m still having problems after the op but hopefully it gets sorted out. My sister is going through her kidney work up to see if she is a match. I’ve gone through the work up and everything went great. We have both just done the tissue typing test. And she is doing a whole heap of test in the next fortnight. I am so grateful that she is doing this for me I appreciate so much. I am so lucky I have got such a supportive family and friends.
I wouldn’t be here today if it wasn’t for my mum and my sister Amanda for making me be a strong person and keep fighting. I have other sisters and a brother which are also very supportive. I have had terrific doctors, too. Dr. Fred Leditschke who was my doctor from birth till I was 18 years old.
I wouldn’t be here today if it wasn’t for him he is one remarkable and caring doctors. I still keep in touch with him and his family. He comes and visits me in hospital.
Dr. Tony James was my urologist till recently and he also is a remarkable doctor who helped me a lot. And, also my nephrologist at the Royal Brisbane Hospital is great. Dr. Woods at the PA is my transplant and urology dr. I’m so lucky I get very good drs.
I am a fighter but I wouldn’t be if I didn’t have the family support or the great drs. That makes all the difference. Thank you for listening to my story if anyone has got some advice about kidney transplant that would be great.
Kylie or Jeano as brother calls me