Dialysis patient, Hemaima Alana Kingi, with her husband, Wiremu Kingi, at their home about to hop in the car to travel to Palmerston North for treatment. PHOTO/ BEVAN CONLEY
Dialysis patient, Hemaima Alana Kingi, with her husband, Wiremu Kingi, at their home about to hop in the car to travel to Palmerston North for treatment. PHOTO/ BEVAN CONLEY
When Whanganui District Health Board members were told at their March meeting that the Horowhenua region was to get three kidney dialysis machines, while Whanganui was still without such a facility there was palpable upset and annoyance. Emma Russell investigates.
Hemaima Alana Kingi travels to Palmerston North hospital three times a week to be hooked up to a dialysis machine for four to five hours each time.
Ms Kingi said she is lucky to have her husband and full-time carer, Wiremu Kingi, escort her. There is no waiting room so Mr Kingi often waits in the car while Ms Kingi receives her treatment.
The couple's commute started on January 17 last year when Ms Kingi got an infection and was no longer able to manage her treatment at home. She travelled to Palmerston North in an ambulance for the first few month until her infection was gone and Mr Kingi could drive her himself.
Ms Kingi is one of 18 patients in the district travelling to Palmerston North because treatment isn't available in Whanganui. A further 18 patients in the Whanganui district receive dialysis treatment at home.
For the last decade Whanganui has debated the need for dialysis treatment at its hospital. Palmerston North has a renal unit with 15 stations and Horowhenua now to receive three self-managed machines.
Patients who need dialysis treatment have entered the end stage of kidney disease and nearly all their kidney function is lost.
Patients and caregivers have stories to share. The WDHB has information that needs explaining.
PATIENTS STORIES
Greg Ratana sits on his couch at home. His 19 year-old daughter and full-time carer is in the room next door. For the last five years he has needed dialysis treatment and in November 2015 he decided to receive haemodialysis treatment at home.
About a month ago on a quiet Friday night at about 7 pm Mr Ratana fell asleep while being dialysed - which is normal. He woke to a beeping machine and panicked at the sight of a light colour shooting up his line - a blood clot. He quickly clamped his lines and stopped the machine.
A technician, who was based in Wellington, wasn't able to fix the machine until Tuesday afternoon. As a result he missed a day of being dialysed leaving him exhausted and in a near critical condition.
Mr Ratana said the incident raised two concerns.
"The miscommunication between the DHBs is a problem and it highlights the need for emergency machines in Whanganui when home machines do break down."
Greg Ratana with his home Haemodialysis machine. PHOTO/ BEVAN CONLEY
Down a long drive way directly behind a town house in Castlecliff is a caravan like no other - it fits haemodialysis patient Tony Davis on a lazy boy with his machine and a month worth of medical supplies.
The 63 year old said he has been getting dialysis treatment for the past four years. For the first two years he was driving to Palmerston North three times a week but it started taking a toll on his life.
Mr Davis received just four hours of training to operate his machine at home even through the official recommended training period is six weeks.
"Technicians and nurses had to check my place was sufficient but at the end of the day they were in a hurry to get rid of me because it meant there was a free station in Palmerston...it gets pretty crammed down there."
Tony Davis in his caravan with his home dialysis machine. PHOTO/ STUART MUNRO
Rural patient James Mosen has been on dialysis treatment for the last four years. The 35 year old travelled from Taihape to Palmerston North three days a week on a shuttle bus. In August last year he made a decision to reduce his treatment to two days a week.
Mr Mosen said travelling nearly every other day was killing him.
"All I was doing was lying in bed feeling sorry for myself. My quality of life was so poor. It was unbearable.
"The best doctor is yourself. Only you know what's best for you...that's what I've learnt," he said.
Mr Mosen leaves Taihape at 12.50 pm and returns as late as 9.30 pm.
WDHB chief medical officer, Frank Rawlinson, and WDHB general manager of service and business planning, Tracey Schiebli, said the board was looking at a range of options but a dialysis unit equivalent to Palmerston North was not viable because of insufficient trained staff known as nephrologists.
Ms Schiebli said there was a big difference between a renal unit, similar to Palmerston North, and a support centre, similar to the one in Horowhenua.
"A service similar to the one Horowhenua, which we refer to as a 'satellite' service, would cater for stable Haemodialysis patients who cannot or do not wish to self-dialyse.
"Complex and unstable patients would continue to receive dialysis in the Palmerston North unit where the nephrologists are based," Ms Schiebli said.
There are a total of 36 dialysis patients in the Whanganui district. Eight patients require peritoneal dialysis who can be self-managed from home. The remaining patients need haemodialysis.
Depending on the severity of the patient's condition, treatment is either carried out at home or in centre.
Dr Rawlinson said currently 10 patients receive home haemodialysis and the remaining 18 patients travel to Palmerston for facility haemodialysis.
"Whanganui could not facilitate unstable dialysis patients without nephrologists medical specialist. There is only a very limited number of specialist in the country and it takes up to 10 years to train once qualified as a doctor.
"Even if there was a specialist available the truth is there is not enough patients to justify the workload," Dr Rawlinson said.
Ms Schiebli confirmed that a service similar to the one based in Horowhenua is an option for Whanganui but said there are disadvantages that need to be understood.
Dr Rawlinson said of the patients who are currently travelling to Palmerston three times a week for treatment, less than half are suitable for consideration to receive self-managed treatment in Whanganui.
"It could create an expectation that now we have a dialysis unit in Whanganui we wont have to go to Palmerston anymore but unfortunately that is just not the case."
Ms Schiebli said the board had to think about an investment strategy that would support the most number of patients.
"If you look at the split of our patients across the district there are 18 in the community and seven of that number are in Bulls, Marton and Taihape.
"If we decided to invest in Whanganui that's not going to help those patients - we have to think about investment for the whole district," Ms Schiebli said.
FOCUS ON PREVENTION
Albert Robertson is a renal nurse practitioner who travels from Palmerston North to work part-time in Whanganui. His job is focused on catching Chronic Kidney Disease (CKD) early before patients require dialysis treatment.
Statistics recorded by the WDHB show a growing number of patients, predominately diabetics, with early stages of CKD. The board recommends six months monitoring for stage two patients. Three to six months monitoring for stage three patients. Stage four is where the patient's care becomes intensive and dialysis treatment is evaluated.
There are 12376 patients with stage two CKD and 3359 with stage three CKD in the Whanganui district.
Dr Rawlinson said the disease could not be reversed but it could be slowed down and catching the disease early was critical.
"If you remain fit, don't smoke and keep a healthy life style in some circumstances you can arrest it. If you are very fortunate in the early stages you may be able to recover some function," Dr Rawlinson said.
Greg Ratana's home haemodialysis machine. PHOTO/ BEVAN CONLEY
PLEAS OF DIALYIS PATIENTS
In a Kidney Support Group meeting at the Gonville Health Clinic last week, patients, caregivers and supporters voiced a number pleas:
Everyone in the group understood that some patients would still need to travel to Palmerston North three times a week for treatment.
"If there is going to be a facility in Whanganui it needs to be self-sufficient but it also needs a renal nurse to be there for support," one patient said.
WDHB clinical nurse specialist in pain, Bronwynne Anderson, has been supporting dialysis patients in Whanganui for the last three years.
Ms Anderson confirmed it would take around six months for a nurse to train in renal but assistance would be limited and nowhere near that of a nephrologists medical specialist.
All patients voiced their concern for the caregivers.
"There needs to be a better support network for caregivers. They carry a huge weight on their shoulders and are not supported enough," another patient said.
One patient said she would like a waiting room at the Palmerston North unit so her husband does not have to wait in the car while she receives her treatment.
Another patient said no one at the Whanganui Hospital had any idea how to deal with dialysis patients.
"If we have any other sickness we are immediately shipped off to Palmerston, that's not good enough."
The group concluded that there needed to be an emergency unit that would facilitate self-managed patients using the facility treatment in Palmerston North and a back up for home haemodyalsis.
"If my machine breaks down, which it has done a couple of times, I need a reliable backup," Mr Ratana said.
In the case of an earthquake or other natural disaster having no reliable facilitate in Whanganui could create a huge problem.
Some patients were unable to get home haemodialysis because they hadn't had the room, they hadn't had the support or were living in transit. A support centre in Whanganui would cater for these patients.
"The right support and backup - that's what we want."
There are two types of dialysis, haemodialysis and peritoneal dialysis.
Haemodialysis is when your blood is filtered by a machine. The blood is pumped out and then returned, cleansed, to your body.
Peritoneal dialysis is when a sugar-based (PD) fluid is put into your abdominal cavity through a tube so your waste products can diffuse into it, after which it is removed.
At MidCentral Health, based in Palmerston North, there are several options for having dialysis treatment depending on factors such as whether its have early or chronic kidney failure, or whether the patient is able to self-manage their dialysis. The specialist will meet with the patient and if necessary refer them to a pre-dialysis nurse who will discuss with the patient the most appropriate way to treat their kidney disease.
