Fact

Each Week 1 Australian dies waiting for a transplant

 

Fact

Organ donors have decreased by 12% with a 6%increase in those on dialysis

 

Fact

Each year 2,440 Australian adults will develop acute kidney failure. Nearly 1 in 2 will die within 3 months

 

Fact

500,000 Australians have impaired kidney function

 

Fact

Between 1995 and 2000, Australians being treated with dialysis or transplantation rose from 5,476 to 11,696

 

 

 

 

In 2000, Jaki Upward, the then 16-year-old daughter of our closest friends, was diagnosed with complete kidney failure as a result of a virus that attacks the kidneys. For the next 6 months she was on haemodialysis. This involved going to hospital 3 times a week and being dialised for a period of 4 hours at a time enduring crushing headaches and unrelenting nausea.

The kidneys control blood pressure, get rid of fluid, cleanse toxins from the blood and control the hormones and haemoglobin in the blood. Dialysis only achieves 10% of what the kidneys can do! Her eyesight had started to deteriorate as a result of the effects of the inevitable uncontrollable high blood pressure and the risk of stroke was high.

Jaki then changed to peritoneal dialysis, a form of dialysis that could be done at home, 4 times a day. She was ecstatic that she no longer had to go to hospital 3 times a week.

However, her condition continued to deteriorate and a number of seizures saw her being rushed several times to intensive care at the Royal Melbourne Hospital. As she lived in Langwarrin, an hours drive from the hospital, her family often stayed with us in Kensington, near the hospital, while she was a patient there.

An operation to remove the kidneys was required in an attempt to reduce the blood pressure, which was at life-threatening levels. When this failed the next step was to urgently find a suitable kidney donor and her grandmother was compatible. In July 2002 the operation was performed.

For the next 8 weeks, Jaki’s life was transformed. She had boundless energy and felt really well for the first time since suffering kidney failure. Her life was getting back to some sort of normality. Sadly, the kidney began rejecting and all attempts to save it failed. She was again back on dialysis.

Another donor had to be found as Jaki’s body was not coping. Fortunately Chris was compatible and arrangements were made to for her to donate one of her kidneys. Because of Jaki’s weak physical condition, the operation could not be performed until October 2003 and arrangements were duly made. This time!

Jaki went back into hospital in May 2003 with a weird neurological episode and was admitted to hospital where she had 3 lumbar punctures, horrible and painful procedures, numerous CAT scans and MRI's, hundreds of blood tests, 3 intensive care admissions where she had to be intubated, and a massive seizure which occurred after she had a brain biopsy which was the last resort to find out what was causing the neurological problem. She was sent home with the doctors none the wiser.

Four weeks later she was admitted to hospital again. While being transferred from Frankston Hospital to the Royal Melbourne Hospital, she suffered massive brain damage from lack of oxygen which put her in a coma and a ventilator did her breathing for her.

Tragically, on 10th July 2003 Jaki passed away peacefully in intensive care with all her family around her. She was a few days short of her twentieth birthday. Her body could not hold out for the October transplant that might have given her another chance.

During her numerous admissions to the Royal Melbourne Hospital we became intimately involved with her illness and its implications almost as if she were our own daughter. We saw her suffering, her parents suffering and that of her twin sister, the highs and lows and her incredible determination to lead as normal a life as possible.

During the period of Jaki’s illness, I learned a lot about the effects and the problems in overcoming kidney disease. It is not just a matter of “Oh I have kidney failure, but that’s not so bad, I can always get another kidney”. Finding a compatible kidney in a country with one of the lowest rates of organ donorship in the world is not easy. Keeping the body going while waiting for a donor is not easy either.

We all need to raise the awareness among our communities of the number of people that die while waiting for a suitable donor and of the terrible suffering they and their families endure.

Because of the shortage of donor organs in Australia, Kidney Health Australia actively encourages Australians to become organ donors. Every week one Australian dies waiting for a kidney transplant. The current 12% decline in the number of organ donors, and simultaneous 6% increase in people on dialysis, is an alarming trend that may result in even more deaths among those waiting for a transplant.

There is no cure for kidney disease. Dialysis and transplantation are the primary treatment options, and over 13,700 Australians are currently kept alive by one of these means.

Kidney Health Australia has provided more than six million dollars for medical research programs in hospitals and universities and plans to increase this support. There are a number of programs they have organised to help raise awareness of the problem and provide support to patients and families. Please check out their website at www.kidney.com.au to see what you can do to help.

Or read about the Murray to Moyne Cycle Relay in which teams of riders are raising funds to support Kidney Health Australia. The more people that help, the less likely that Jaki's story will be repeated.