Living proof of need for life-saving donors
Organ Transplant Presentation - Rotary Club of Yamba
Thank you to the Rotary Club of Yamba for the chance to come and talk about this important topic. This obviously means a great deal to me, as I received a kidney transplant back in 2010. But that's not where the story starts.
It starts back in 1992 when I was living with my first husband in Yungaburra in Far North Queensland and my beautiful girl Natasha was born. She was small, only 6lb 3oz in the old money and perfect in every way - or so we thought.
Thirteen months later, I took her on holidays to Sydney to visit my brothers. One afternoon, she awoke from her sleep and was really unwell - essentially she was like a limp rag doll.
I took her to the doctor's and he told us to go to emergency at the Randwick Children's hospital thinking it could be meningitis.
Blood tests were done at the hospital and showed, that apart from elevated creatinine and urea, biochemical markers used to measure kidney function, there appeared to be nothing else really wrong, and after a few hours, Tash had recovered and we were sent home with instructions to keep her well hydrated and to have follow up blood tests a few days later.
The results from the follow up tests showed that whilst her kidney function had improved, the numbers were still outside of the normal range, so we were referred to see the paediatric kidney specialist at the hospital
He diagnosed her with a rare disorder called branchio-oto-renal syndrome and, as it's a genetic condition, he recommended I get my kidneys checked out when we got home to Far North Queensland.
Like Tash, my results showed that I too had impaired kidney function and we both would need to have regular visits kidney specialists to monitor them.
Over the next five years we both had regular blood tests and specialist visits, and it was around 1998 Tash started to really get sick.
Unknown to me, Tash had started to throw away her lunches at school - she felt sick all the time and didn't want to eat.
She lost weight. She was getting tired all the time and would come home from school and fall asleep straight away. She started to complain of bad headaches.
We brought forward our next lot of tests and the results showed her kidneys were failing, her blood pressure was sky high - hence the headaches - the toxins now in her blood made her feel sick, and her haemoglobin started to drop which made her feel tired.
This meant a regime of medications which included:
- Weekly injections to boost her haemoglobin,
- Daily growth hormone injections - the kidneys regulate growth and she was well below the charts for a six-year-old
- Tablets to take when she did eat to stop her body absorbing too much phosphate which she could no longer get rid of
- More tablets to keep calcium in her bones.
It was around this time we had to start talking about treatment options including dialysis and transplant choices. With dialysis, we could choose from Haemodialysis or peritoneal dialysis and we wanted to see if there was a potential live kidney donor in our family before going onto the waiting list for a deceased donor.
Unfortunately, Tash's father was not a match, and for obvious reasons, I couldn't donate, so we asked our siblings if they would undergo donor testing
In the meantime, she started dialysis.We decided to go with Peritoneal dialysis (PD).
This is where a glucose solutions is drained into the peritoneal cavity using the tube in Tash's belly.
This cavity acts like a false kidney with the solution attracting toxins across the various membranes by diffusion over a period of 4-6 hours. This solution containing the waste products is then drained out of the same tube.
The benefits of this type of dialysis, is that it can easily be done absolutely anywhere. As long as you have clean table, and somewhere to hang the bags, you can do it anywhere. For Tash, we decided to use a machine which automatically fills and drains the cavity several times overnight.
There are risks though with this type of dialysis, the major one being infection where the tube leaves the belly, and unfortunately, it was an infection which saw us having to be flown from Cairns to Brisbane by the Royal Flying Doctor's Service in June 1999 when Tash got life threatening peritonitis.
Thankfully, Lance, one of my brothers, was found to be a match for, and on 30 November 1999, he donated his left kidney to Tash in a life transforming operation.
Amazingly, the kidney started working almost straight away, producing lots of urine. And after a few days in ICU, Tash was back in the ward and able to come home.
Now there were new medications to get used to immunosuppressants, steroids - so many.
These types of medications can have quite nasty side effects from weight gain to being more susceptible to cancers, in particular skin cancer.
But no more dialysis, no more being sick all the time, being able to go back to school properly - she had missed nearly the whole of grade 2 by this stage - and even though the doctors appointments were ongoing - and always will be, it's a small price to pay to be a normal kid.
Fast forward to 2008 - we're now living in Brisbane, I'd remarried, I was working full time and studying part-time, Tash is now a typical teenager, and my kidneys start to fail and dialysis for me is imminent.
I make the decision to do PD like Tash had done, however, I ended up with complications, so started doing haemodialysis, first in the dialysis unit at the PA hospital, then at home.
Home haemodialysis allowed me to take control of my treatment. I connected myself to the dialysis machine - she was called Charlie - and my blood was pumped from my arm, through the filter on the machine to be cleaned, and then back into my arm.
I did this for six hours a day on alternate days. This gave a good clearance of the toxins in my blood and was much gentler on my body and allowed me to feel much more 'normal' on my days off.
I was fortunate enough able to work from home during dialysis days and continue my studies.
As time went on, I was able to do nocturnal home haemo where I was able to connect to the machine overnight while I slept. This gave me my days back and a lot more freedom again.
Unlike Tash, there was no live kidney donor available for me - my husband, Joe was instead diagnosed with type II diabetes when he went through the testing process - so I went onto the waitlist and in the early hours of the morning of the November 25, 2010, I got the call we had been waiting for, and later that day I had my kidney transplant.
I can honestly say, that not a day goes by where I don't think of my unknown donor and his family and I am ever thankful they had discussed such an important thing and supported organ donation. I later found out that this one person saved three lives at the PA that day, two kidneys and a liver transplant...
Like Tash, I had to get used to the side effects of my new medications, weight gain for me was and it's still a big issue.
Unfortunately, while I was going through all this myself, Tash's nine-year-old transplanted kidney started to reject. It's a sad fact that even once we've had a transplant, it's still not a cure, only another treatment option and the medications we have to take to stop our bodies from rejecting our new organs, unfortunately damage them as well.
By late 2008, Tash was also back on dialysis - this time she chose to do haemodialysis in hospital and the doctors removed her rejected kidney.
8 years on, Tash is still doing dialysis three times a week at the Gold Coast Hospital. She is now 24 years old, working, and is the most positive generous person I have the pleasure to know.
But after eight years on dialysis and being on the transplant list, there is no new kidney yet and dialysis does take its toll on your body over time.
When you reject an organ, your body develops antibodies, which makes finding a match for a second donation that much more difficult. It will only be by increasing the availability of organs in Australia that people like Tash will increase their chances of receiving that life changing donation.