This week marks Kidney Health Week, and at MediStays we acknowledge the many Australians and their loved ones travelling to receive life-saving medical care for kidney disease. We are very grateful to Yvonne and Neil Hitchenor for sharing their incredibly personal journey with us.
Following years of chronic kidney disease and a kidney transplant, Neil has required ongoing care at the Royal Melbourne Hospital (RMH). The RMH is 3 1/2 hours from their home in Albury-Wodonga on the Victorian/NSW border. Neil’s wife, Yvonne, has a professional background in nursing and is an intelligent and passionate advocate of Australians living with chronic kidney disease. Several months ago, Yvonne called MediStays to arrange accommodation for herself and Neil. She generously offered to meet me the next time they were in Melbourne to share Neil’s experience with kidney disease and the challenges of travelling long distances for medical care.
So, last week Yvonne and I found a quiet place to meet at the RMH when Neil was at an appointment. Yvonne started by telling me “Neil and I lived on a farm with our three young sons at Coolamon, which is 40km north west of Wagga Wagga in the NSW Riverina region. “Our first experience with kidney related issues began in 2006 with our son Angus. He was 15 at the time and had an accident whilst competing in a local Motocross competition” shared Yvonne. It was established following scans that his kidneys were damaged in the fall which very soon became a medical emergency. Yvonne continued “Scans at Wagga Wagga Base Hospital Emergency Department, indicated he had cystic kidneys and his kidneys were bleeding. We were seen by the on call consultant who questioned us as to whether or not Angus had been a sick child with any urinary problems. He then came straight out with
“…. you will need a transplant one day and will end up on dialysis”.
As a fit and healthy teenager, Angus was shattered as were his family. At that stage, the family weren’t aware of kidney disease in their family. Angus fully recovered, and their busy lives continued. Then, three years later Neil was attending his GP for a routine visit, where it was revealed that Neil had particularly high blood pressure. Following some further investigation his GP revealed that Neil was in Renal Failure. “His kidneys were functioning at less than 1/3 of their normal capacity and there appeared to be a functional problem with his entire urinary tract”. shared Yvonne.
Very soon after this, Neil was seen by a urologist, who performed a simple day procedure to establish what was going on. This situation rapidly unravelled, with a day procedure turning the entire situation on it’s head. Neil had a urinary tract and kidneys that were unlike anything the urologist had seen. “This in turn required further investigation in order to treat, so as to slow any further damage to his renal function” said Yvonne.
Over the next few months, Yvonne and Neil endured the ten hour ‘round trip to Sydney and back. In Sydney Neil had specialist tests at the Royal Prince Alfred and Concord Hospitals. After one trip, they arrived home and Neil’s condition rapidly deteriorated into a urosepsis infection that resulted in admission to the Intensive Care Unit (ICU) and a four month stay at the Wagga Wagga Calvary Hospital.
Yvonne shared how incredibly difficult this time was for Neil, herself and their young family. Firstly, the unknowns surrounding Neil’s diagnosis and prognosis. Yvonne found it extremely difficult to get accurate information from Neil’s doctors about his condition because they were simply in unchartered territory. Neil was admitted again to ICU a second time with urosepsis in 2013. This admission was particularly difficult on many so many fronts. Not only was Neil acutely unwell he suffered from delerium, constant rigors and he also contracted several other infections.
Accurate information became critical for the family as plans needed to be made for their business and personal aspects of their lives. Neil had been in ICU for a month by this stage with no improvement. In desperation, Yvonne asked his treating Psychiatrist at the hospital where was this all heading. “I said to the pyschiatrist “no one seems to be able to give me any idea and I need to make important decisions relating to our business interests” shared Yvonne. She was told that while Neil may stabilise, he may lose one or both kidneys requiring an organ transplant, or he may even die. While the severity of this situation was devastating, Yvonne said
“I remember that even though this was such a shocking thing to hear, I also recall this sense of calm simply knowing what I was looking at”.
The psychiatrists frankness empowered Yvonne to prepare herself and their children for all situations. “It also helped me to make better plans for our future” said Yvonne.
One of the most difficult decisions Yvonne made while Neil was in ICU, was to sell his transport business. “Neil has spent years building his business and it was absolutely central to his self-worth and purpose in life” Yvonne told me. However, with Neil unable to operate the business into the future they made the decision to put the business on the market.
“It was one of the most difficult decisions I’ve ever had to make, and I knew Neil would be absolutely devastated”.
The business sold quickly but a huge part of our lives was now gone. The difficulties didn’t end there. Yvonne is a specialist nurse and was working with rural communities across the Riverina at the time. She had worked extremely hard in this role and appreciated the flexibility afforded to her by her employer when Neil was unwell. “I worked from the hospital and my employer was very flexible and adaptable”. Despite this, as Neil’s condition continued to decline, Yvonne had no choice but to end her 30 year nursing career and focus on her husband . “Neil experienced severe PTSD and psychosis along with the complications of End Stage Renal Failure. His world had been turned upside down” shared Yvonne. “The pressure of our situation continued as Neil required dialysis in the Wagga Renal Unit 3 days a week” continued Yvonne.
“At that time we were driving 240km every week for Neil’s dialysis in Albury”.
Once their youngest son Hugh had completed Year 12, Yvonne and Neil decided to sell their family farm and move to Albury. They hoped this would simplify their lives and access to renal health care at The Royal Melbourne Hospital.
“We knew the RMH was a centre for excellence in Renal Transplantation”
With Neil unable to work and Yvonne as his full-time carer, there was a need to apply for financial support. Yvonne was approved to receive a carers pension, however support for Neil was not so easy. “There was absolutely no way Neil could work when he was undergoing dialysis, however this in itself did not qualify Neil for a Disability Support Pension (DSP)” said Yvonne. Months of campaigning and seeking support from health and government departments, finally resulted in a review of Neil’s case. Yvonne shared “Neil needed to score 20 points to be eligible for the DSP. When he was formally reviewed, it was shown that Neil scored twice what was needed’.
Once they relocated to Albury-Wodonga , Neil and Yvonne undertook to real challenge of home heaomdialysis. Performing this treatment from home afforded them some flexibility in the relentless requirement of having dialysis to remain healthy enough to qualify for an organ donation.
Yvonne also shared “together we managed Neil’s home dialysis, he was amazing. Let’s not forget in doing this we saved the government tens of thousands of dollars and it was so hard to understand why financial support to survive was so hard to obtain. We were living in a situation we had never previously considered” said Yvonne. The couple were young, raising their family and working hard in their respective careers they had built over the years. To be suddenly living without employment, their beloved farm and a life-threatening illness was inconceivable.
Getting on with their new life, they received a call at midnight on the 5th February 2018 on Yvonne’s mobile phone. Neil had just started a dialysis and they initially thought “who would be calling us at this hour?”. Yvonne recalls “When I answered the phone it was the RMH informing us of a potential kidney donor. I was scrambling to think. All of these things were going through my mind; it was the most extraordinary feeling”. Neil was in shock.
“Neil sat there and said to me “I don’t think I’m ready…. someone is dying for this”.
“This is someone’s last wish for you to have this opportunity, you need to take it” replied Yvonne.
Needing to be at the RMH in Melbourne by 5am, Yvonne, Neil and their youngest son Hugh packed their bags and set-off down the Hume Freeway in the middle of the night. Smiling, Yvonne laughs and tells me “Could you believe, as we drove down Royal Parade in the dark, with the lights of the hospital in sight, the radio was playing Kiss “I was made for loving you”. The things you remember!
The next part of their journey sits very uncomfortably with both Yvonne and Neil. As we entered the hospital, two hospital staff actually said “congratulations” to us. Knowing the reality of an organ transplant, that another family had just experienced the devastating news that their loved one had died, Yvonne and Neil both found this very unexpected and confronting.
Arriving at the hospital at 5am, Neil was then wheeled into theatre at 11am. This gave their sons and partners time to travel the long distance to Melbourne from Wagga to be together. “It really was a magical experience” smiled Yvonne.
“The magical experience of a second chance and we were all there to share it together”.
And, while they celebrated the gift of Neil’s kidney transplant, in the back of Yvonne’s mind she knew of the logistics ahead. Yvonne faced the challenge of finding affordable accommodation near the hospital, car-parking and meals. “I needed somewhere to stay when Neil was admitted, but also for six weeks once he’d been discharged” said Yvonne. Again, the couple were faced with the financial stress of maintaining their home in Albury and paying for inner-city accommodation. With the support of VPTAS, the family managed through this period and finally returned home. Yvonne shared “… at home we planted a beautiful magnolia tree in honour of our donor, it is our memory tree”.
“We hope that sharing our journey will help others.
“Kidney disease is a traumatic and devastating experience”
“While we treasure the gift of Neil’s kidney transplant every day, people need to understand the journey. Everyone’s journey is different” said Yvonne. She continued “We also want to share the wonderful support we have received and the incredible people we have met on our journey. If it wasn’t for Neil’s kidney disease and organ transplant, we wouldn’t have met these people”.
Angel Flight have been amazing and fly us to and from our appointments in Melbourne. It is also peace of mind knowing that MediStays is now here to support us to find accommodation. When you’re in the middle of this experience you just can’t google for support. It doesn’t work like that when your husband is being driven down the road in an ambulance at 3am. As carers, we need reliable and relevant options to support us”. Carers Victoria and Kidney Health Australia have also been places I could go to access advice and assistance and Emorgo House were wonderful support for accommodation.
Thank you to Yvonne and Neil for sharing this detailed and honest account of their journey with kidney disease. If you would like to share your personal experience of kidney disease, we would love to hear from you. Please leave a comment on our social media pages or on our blog post at www.medistays.com.au
At MediStays, we support patients and carers of Australians needing both short and extended stay accommodation to receive specialist tests, life-saving dialysis and organ transplants. If you need support to find accommodation while you or a loved one are visiting hospital, please contact our team at firstname.lastname@example.org or (03) 9685 7553.