Hello, my name is Denise and I am 19 years young. I didn’t really have a sick day in my life until I was diagnosed with End Stage Renal Failure at the age of 15.
The whole experience has been a real eye opener for me and my family and I have realised that life is too short to waste and how lucky I am to have my family for support.
My kidney journey started when I was 15 years old and was out shopping to buy a pair of shoes. Usually I am a size 7 but that day I was a size 5; to this day I buy size 4 and 5 shoes. Besides my shoe size dropping, I had extremely itchy skin.
We tried everything to stop the itchiness, from changing our washing powder to cutting the tags off my clothes, but nothing worked. So Mum became worried, like any mother would, and insisted on a visit to the doctor and a blood test.
The first doctor to look at my test didn’t believe the results and asked for another blood test to be done. Back then I hated needles so it was a week later before I got my bloods done again and this time I had a different doctor who told me to pack my bags because I was going to hospital. My Creatinine level was over 1000!
That first day in hospital is a complete blur – so many doctors, so many nurses and people coming in and out of my room all day. I remember just agreeing with all these people and simply doing what I was told.
That afternoon we were advised that I had End Stage Renal Failure and I needed to start Peritoneal Dialysis (PD) immediately.
That night I had an operation to insert my PD tube (I called him Bob) and I was on dialysis within 3 days. I felt very numb and I didn’t feel like myself at all. I spent the next 4 weeks in hospital with my Mum or Grandma by my side learning how to use my dialysis machine (who I called Dilly).
Being on dialysis changed my life and everything gained some positive and negative points.
The negative things were trying to find jeans and pants that weren’t too high waisted for me because of my PD tube; friends who treated me differently (my friends treated me like glass, which was difficult); and, of course, the obvious negative thing was a tube hanging out of my body which meant I could only wear long tops and belts to keep my tube out of site.
On to the positive things about being on dialysis – it made me unique from everyone else. I had a lot more energy for school, work and the other activities I wanted to do. I had an excuse not to go out drinking and partying every night with friends who were into that scene. I also was re-united with my best friend Katie. We did dancing together when we were younger, but when I was diagnosed with Renal Failure we started to hang out again and became really good friends.
I was on dialysis for 11 hours every night. Occasionally, I was allowed a night off and I spent it with my twin cousins or Katie. Many nights my dialysis would wake me up during a drainage period if I wasn’t lying in the right position – it would drive me crazy!
Sometimes my iron levels would drop, so my Mum and Grandma would spend the day blending green vegetables to mix into mince meat and make lasagnes and pies etc. This worked well because it increased my iron levels and I didn’t have to eat green vegies on their own (I hated green vegetables!) and it also kept my doctor happy.
Before I was diagnosed with End Stage Renal Failure, I worked part-time at an outside school care centre. When I was diagnosed and had to spend 4 weeks in hospital, my employer assured me my job would be waiting for me when I got back. My employer was very understanding and supportive. To this day I continue to work there, now full time, with great people.
My school was also very supportive. I had a Guidance Officer who I could go to with any problems I had. The school made allowances for minor uniform changes, to make me feel more comfortable with Bob (my PD tube).
During my senior years (11 and 12) I spent 2 days a week at TAFE studying childcare and the day I completed my Certificate in Childcare I was offered full time employment at the outside school care centre.
My Transplant Journey
My doctor tested all my family and amazingly everyone was compatible. Both my Stepfather and Grandfather gave up smoking and took up fitness regimes so they could donate, if needed. To this day my Stepfather says it was a conspiracy as I ended up receiving a cadaver kidney anyway.
About 8 months later (August 2008) out of the blue we received a letter saying I was on the waiting list for a new kidney. Three days later I was at the coast with my Grandparents, Aunty and Cousin and one night I could hear all the phones ringing. I woke Grandma up to answer one. It was Mum and Tony (my Stepfather) – they were on their way to come and get me as I had received THE phone call!
I remember feeling numb and having to be brave for everyone. I kept thinking “don’t cry, don’t cry, it’s all going to be good”. But, when Mum walked in the door, I burst into tears. Tony sped all the way to the Mater Children’s Hospital, Brisbane from the coast. Mum was crying and couldn’t talk to the lady in emergency, so Tony had to do all the talking, for once.
We were shown to a room where doctors came in to talk to us about what was going to happen – I was still in shock. I think it was about 12 hours later before I went in to the surgery to get my new kidney. On our way to the surgery Tony offered to take the esky up which was holding my new kidney in it! Of course, the doctor said no!
When I woke up from the transplant operation, there were lots of faces peeping in on me – Mum, Grandma, Cherie (Aunty), Lilly and Cece (twin cousins) and I remember Mum in hospital gowns and gloves. I pretty much slept whilst I was in Intensive Care. I also remember a light outside of my room that was always on and was directly in line with my eyes and made it hard to sleep!
Within 3 days I was up in my own room which was covered in stuffed puppy dogs and lots of yellow flowers (my favourite colour). Everyone brought me chocolate even though I was only allowed one a day, which sucked.
I had 12 tubes in me, from drips to blood draining bags. Medications at this stage had tripled and I was taking 35 tablets a day – that became very confusing because you could not have certain tablets at the same time as one of the others. Luckily for me I had Mum there to help me organise them; we had 4 boxes full of medications for different times of the day. One particular tablet I had to wake up at midnight for. It did get a lot easier as time went on and today I only take 13 tablets a day, twice a day.
But back to my story; my lungs collapsed a few times and Mum had to keep hassling me to put the oxygen mask on, however much I hated it. It wasn’t until the doctor threatened to put a big needle in to drain the fluid out of my lungs that I stopped arguing with Mum.
Ten days after my transplant I was allowed to come home. However, I had to go back to the hospital every morning for one month for a blood test and wait around for the results to make sure everything was OK. Most days it was. Mum went to work and I stayed home resting. After 6 weeks I was allowed to return to school but still had to get a blood test done every two or three days.
Three months (November 2008) after my transplant I tested positive for the BK Virus, so my medication was reduced dramatically and I had to undergo daily blood tests until a balance could be reached. Sometimes I still test positive for the BK Virus which just means we reduce the Tacrolimus (an immunosuppressive drug) dosage until it has gone away.
Five months (January 2009) after my transplant I went on our family camping trip. There were no showering facilities there so you had to bathe in the river and the toilet was a camp toilet! Then on New Year’s Eve, I came down with a temperature. During a country dance, Mum decided to take me to the local hospital. They admitted me and I spent New Year’s Eve in hospital. I remember getting frustrated with the doctor because he insisted on trying to put drips in 3 different places, unsuccessfully, before he finally listened to me to put the drip in my left hand! The next day Mum raced me back to the Mater Children’s Hospital in Brisbane. It turned out to just be a urine infection. From then on I was pretty lucky. I had monthly check ups but everything was going really well.
Around 8 months (April, May 2009) after my transplant I went to Kidney Kids Camp. It was fantastic meeting other children my age who have been through the same kind of things that I have. I still keep in touch with the girls I met and we are all there for each other.
Several months before my third year transplant anniversary I started to feel sick every time I looked at my tablets and found myself skipping doses. I realise now I should have talked to my Mum about it, rather than hiding it. She freaked out when she realised that I had too many tablets in my box and worked out what I was doing. She would stand over me and watch me like a hawk as I swallowed my tablets. Mum also insisted that I talk to my doctor; he made me aware of how silly I was being, took my blood and told me that I dodged a bullet this time but next time I might not be so lucky. To put it bluntly he said not taking my tablets was like playing Russian roulette. I could have seriously damaged the kidney, or worse, the kidney could have rejected and I would have been back on dialysis. I now realise how silly I was.
I was asked to be an Ambassador for the Childhood Kidney Support Network which has reinforced the idea that I must do the right thing. Life is too short to waste.
Some of my achievements whilst on dialysis and after my transplant…
* Learning to drive. I eventually gained my Learner Drivers on the third attempt with my Grandparents. It took me over 100 hours before I could take my practical test. Whilst I was taking my driver’s test, which I failed the first time, Mum drove up the driveway beeping the horn like a maniac with an adorable little sky blue Nissan Micra that I’d seen and fallen in love with, however, I didn’t expect to get it.
* Working full time at an outside school care centre. When I was first diagnosed with kidney disease and had to spend 4 weeks in hospital, my employer assured me my job would be waiting for me when I got back. My employer was very understanding and supportive. To this day I continue to work there with great people.
* Kidney Kids Camp where I met some amazing people who had been though similar things as I had, it was also a lot of fun.
* Road trip with Mum driving to Bendigo Melbourne. Stopping along the way to see the sights, I made sure I took my medications and tried to eat healthy along the way. We went to visit Mum’s long lost friend from school and also my kidney friend Beccky. This road trip was a very positive experience and I would definitely do it again.
* My dog Gypsie is a Movie Star! An opportunity came along for me to audition my dog Gypsie in a movie. She of course won the role and we spent 5 weeks on set watching and being part of the production of Bait 3D. It was an awesome experience. Gypsy and I got to meet a variety of people including Lincoln Lewis and his family, Xavier Samuel, Carieba Heine and Sharni Vinson. My experience on this movie led me to sign up to an animal behaviour course, which I am currently studying.
“I hope my story will help others. I am very happy to speak with anyone who is experiencing kidney disease and the transplant journey to share my story and offer support.”
From Mum Lisa…
Here is a great diet tip – it even fooled the doctors – Denise refused to eat vegetables. Her iron levels were very low and she had to have Epoetin injections to build up her iron stores. But she refused to have the injections, so I hit on the idea of blending into mush spinach, tomatoes and any other vegetables I had and mixing it with raw mince, in large quantities. I then proceeded to make meat balls, pies and lasagnes, cooked and frozen ready for use, just mini ones. Denise happily ate these, needless to say her iron levels came up, and the doctors reduced the dose of Epoetin injections first to fortnightly, then monthly and then not at all. The truth is Denise never had any injections after the first one, so the spinach etc in her food was all natural. I wouldn’t advocate doing this unless you are desperate like me, but food-wise it might help with fussy eaters.
