“It’s too late”.
These are the chilling words a doctor told Geri Stantiall six years ago. She was in her late 30s when she heard the news: There was no way to reverse her diabetes.
It was 2015 and Geri had been battling type 2 diabetes since high school.
Now, aged 43, blind in one eye and unable to walk unaided, she sits in Tauranga Hospital’s renal unit three days a week, for five hours each time, on dialysis.
She is surrounded by people and machines cleaning their blood and returning it to their body.
It’s where we sit as she tells me it’s her children – being able to say good morning to them, their smiles – that has kept her going on dialysis for the past six years.
But despite this, her 10-year-old daughter has been complaining. She misses her mum and cannot understand why she is so sick.
“‘Why can’t you do what we used to do Mummy? I miss you Mummy’ and I’m thinking, ‘but I’m right here’,” Geri says, as machines click and hum around us.
“She says, ‘I miss when you used to just pick us up and take us to the beach after school and just let us run around and play with us. You used to play with me’.”
These days Geri can’t walk without help. She used to easily walk into the renal unit but over the past six years she has watched her body grow weak like everyone else’s around her.
Relying mostly on crutches, a recent injury has left her in the wheelchair.
She also can’t drive after losing sight in one eye more than five years ago.
Instead, she relies on a carer to drive her daughter to school.
But it is better than being blind in both eyes, as she used to be.
“I was completely blind at one stage, so I had to use a blind stick. But I had surgery and my sight came back [in the left eye].
“I was so upset that I couldn’t see my kids smile anymore and I prayed like heck that God would give me my sight back.”
It wasn’t always this way and Geri believes it didn’t have to be, either.
“This is what happens when you don’t listen to your doctors.”
Diagnosed with diabetes at high school, Geri has been no stranger to the implications of the disease. However, without seeing, and therefore believing, the long-term effects of diabetes, she didn’t think she had anything to worry about.
“My mother died at 27 of renal failure. I was only 4.
“All I remember when I was younger was ‘don’t eat the sugar’. My cousin and I used to have Weet-Bix for breakfast and my aunty used to put the box in front of us so I couldn’t see him having sugar.
“Growing up, I knew my mum had died of course, but I didn’t understand why they weren’t letting me have this or that. I think it comes down to planting that root down properly.”
”A lot of it is what we choose to eat, but also what you are brought up to eat.
“Then again it is what you can afford in the cupboards. What we call flash food is actually the basic food, the food that you should be eating.”
She admits one of her biggest regrets was not listening to her diabetes nurse.
“I’m a type 2 diabetic and it is something that I could have actually turned around, I could have changed it and not been in this situation.”
Geri isn’t alone. In the wider Bay of Plenty District Health Board area, 165 people receive dialysis. Some have to travel to Waikato Hospital to receive treatment, including those in Whakatāne.
Like Geri, most of them are there because of the effects of diabetes.
Over time, poorly controlled diabetes can cause damage to blood vessel clusters in the kidneys that filter waste from blood. This can lead to kidney damage and cause high blood pressure.
High blood pressure can cause further kidney damage by increasing the pressure in the delicate filtering system of the kidneys.
The cost of it all? Bay of Plenty District Health Board acting chief operating officer Bronwyn Anstis says $5,845,089 was spent on renal related services in the 2019/2020 financial year.
It’s just a small dent in the $2.1 billion spent a year on diabetes nationwide. The trouble is keeping that number down.
About 8000 people in the Western Bay of Plenty region have type 2 diabetes, including 1400 Māori and 200 Pasifika. About 4500 are men.
The number of Kiwis with type 2 diabetes is projected to rise by 70 to 90 per cent by 2040 if nothing is done, according to a recent PwC report.
There are currently about 228,000 with the disease. This could rise to 390,000 to 430,000, or up to 7.4 per cent of the population.
The report said New Zealand was headed for “epidemic proportions” of diabetes in the next 20 years.
People will develop the disease younger and there will be worse health outcomes for minorities if “no action is taken now”, the report found.
It means more people could be like Geri – or worse.
As we sit and chat I take notice of those around her, some missing their feet or legs due to amputation resulting from diabetes.
None are smiling and in a room so hot it’s making me perspire they are all wearing beanies, layers on top of layers and tucked in with blankets.
Geri wears a beanie trying to hide her hair she forgot to do before I came. As a hairdresser by trade she doesn’t want a photo advertising her bad-hair day, she says with a laugh.
A bright purple sleeping bag lies across her lap and, as with others around her, headphones connected to the television above are close by, allowing them to zone out for the five hours.
Geri tells me all the layers and heat are because once the blood goes back into the body, it’s colder from the efforts of the machine that works to clear the waste from her blood.
And she means literal waste. Geri cannot use the bathroom and limits her liquid intake to 750ml a day. That includes a yoghurt. And for the time she has sat today, three litres of waste has been extracted from her blood.
It was her inability to go to the bathroom in the first place that led her to where she sits today.
“In actual fact, my kidneys were failing on me.”
When she was pregnant with her son in 2003, Geri had to start taking medication. For close to 20 years, she hasn’t missed a day of taking it.
Now, she is on a different type of insulin which is working okay, she says, but medication isn’t enough.
“You have to change your whole mindset.”
Eight years after her daughter was born, Geri went to the doctor multiple times with a severely bloated stomach, asking “what is wrong with me?”
It was a specialist that told Geri her kidney was functioning at 7 per cent.
“I started getting cold all the time. I would sleep all night, all day. My husband would want to take me out and all I’d do was sleep. All I could do was think, ‘get me home to bed’.
“I actually thought I was dying, really dying, with only a couple of weeks left.”
With that in mind, she decided to take her children on a holiday to Auckland, giving them memories with her for what she believed was the last time.
When she returned home, Geri went to her doctor who said she needed a pre-assessment for dialysis. Wanting nothing to do with it, Geri asked if exercising more and eating better would help her diabetes.
“The doctor turned and said to me, ‘It’s too late’. That’s the worst words you want to hear.
“I just sat there with my mouth wide open, absolutely shocked at the diagnosis. I guess I was so selfish, within myself, thinking that I was all good … So lots of things have changed for me, apart from the sitting here three days a week.”
While that is her reality, Geri admits that at the start she wasn’t so positive.
“I bawled my eyes out, I was so upset because I thought, ‘Do I want to live like that or am I prepared to carry on until I die?’
“I couldn’t believe people were sitting there for five hours, and thought it was such a waste of time. I was an active mum, we had dancing and all these things and I wondered, how would I be able to do these things with my girl?
“I wanted to give up, to be honest, I didn’t want to do dialysis. I thought there was no point in doing it. I’m just waiting here till I die.”
But there is always hope, that technology can change and Geri is happy to hold on for her children. However, she is also too high a risk to have a kidney transplant.
As she adjusts her chair, making sure the tubes transporting blood from the fistula in her arm are all intact, Geri says the harsh reality of dialysis is she could arrive tomorrow and there will be someone missing that used to sit in the chair next door.
Or it could be her.
“It changes just like that, it’s really fast. I don’t know from day to day, if I’m gonna have a good day; Whether I’m going home or going to the hospital.”
Geri may bear the brunt of her disease but having diabetes affects the whole family, she says.
“My kids are the ones that suffer as much as I do and my husband because there’s a lot more he has to do now. But he’s a beautiful, patient man that just picks up the pieces for me and goes along with what needs to be done.”
Renal service clinical nurse manager Katie Johanson says the Tauranga unit has 28 patients who attend three times a week. There are also eight patients who do home haemodialysis and about 40 who do peritoneal dialysis at home.
At Whakatāne Hospital, there are 24 patients who attend three times a week, 13 patients who do home haemodialysis and around 35 patients who do peritoneal dialysis at home.
“We have patients that travel from all around the Bay of Plenty to undertake dialysis in Whakatāne and Tauranga. We have some patients in the Te Kaha area that travel to Whakatāne three times a week.
“Both the units are full, so we have on average 12 patients that travel from Tauranga to Waikato three times a week, and in Whakatāne we have five patients that are either travelling from Whakatāne three times a week or they stay in Waikato as the travelling time is too long.”
It’s the same story in Rotorua. Lakes District Health Board clinical nurse manager Tracy Boyd said the hospital currently treated 24 haemodialysis patients over six days per week and 36 peritoneal dialysis home-based patients.
However, some six to eight patients have been travelling to Waikato District Health Board for treatment three times per week, she says.
“The numbers treated in the unit have remained steady up until approximately the last six to 12 months, when there was an increase in numbers. However, the increase did not see the number of permanent patients increase sufficiently to have a second shift here.
“They will be able to be treated in Rotorua from early July when an afternoon shift will start here.”
In the past, patients have travelled from as far as Taupō and Tūrangi to have dialysis in Rotorua.
“The increasing number of people requiring dialysis is a concern. Needing dialysis has huge personal costs, for example being unable to work and disruption to family life. It is also a large cost to the health system.”
Johanson, of the Bay of Plenty District Health Board, says the number of people needing dialysis was increasing due to the high prevalence of diabetes, the ageing population and more complex health needs.
While it was a privilege to be part of each patient’s journey, it comes at a cost, she says.
“For dialysis patients, it is ongoing, time-consuming and it is a life-sustaining treatment that can create a big burden on them and their whānau’s lives. These patients often have a lot of other health conditions, so it is often a challenge to address all their health needs.”
She says it is unfortunate for those patients who have to travel to Waikato for treatment, but the number continued to grow.
“It is very hard to tell them that they will need to travel to Waikato for haemodialysis.
“Ideally, we would like to have a facility of sufficient capacity to allow us to provide care for all of our renal patients.”
Geri agrees. She would like to see a renal ward with more seats plus an emergency area independent of Waikato Hospital’s help.
“I also feel there should be more done in the community about this, we could be educating people more than we are.
“I would like to see renal failure where cancer is. It might seem like a big jump but it’s not.
“I feel like we are alone.”
But for now, Geri sits and waits, with layers on top of layers, while a machine acts as her kidneys to ensure she can go home and be with her children.
“I’m staying healthy enough to be there for them, to say good morning to them, to see them smile.
“Those are things that I look forward to with my children.”
About type 2 diabetes
• Type 2 diabetes is the most common form of diabetes. It is the result of the body not creating enough insulin to keep blood glucose (sugar) levels in the normal range.
• For many people (but not all), type 2 diabetes can be prevented by making healthy food choices and staying active.
• Some groups of people are more likely to develop type 2 diabetes. They are Europeans aged 40-plus; Māori, Asian, Middle Eastern or Pacific Island descent aged 30-plus; people with diabetes in blood relatives; and people with high blood pressure or overweight.
• Symptoms may include: lethargy, feeling thirsty, frequent and hard-to-heal infections, going to the toilet often, poor eyesight or blurred vision, and frequent hunger.
Possible complications of diabetes
• Damage to sight. Diabetes eye damage must be picked up early for it to be successfully stopped or treated.
• Kidney disease. Diabetes can cause blood vessels in the kidney to become thickened and damaged.
• Foot problems, caused by nerve and blood vessel damage. Signs include numbness, tingling and pain or a burning sensation. Unaddressed, this could lead to amputation.
• Mouth, teeth and gum problems including gum disease, oral infections and dry mouth.
• Impotence in men. According to the Canadian Diabetes Association between 50 to 70 per cent of men with diabetes develop this problem.
• Vaginitis and vaginal infections in women.
• Cardiovascular and blood vessel problems.
• Hyperthyroidism or hypothyroidism.
• Higher risk of infections. This includes infections of the bladder and kidney, mouth, feet, skin or vagina.
Source: Diabetes New Zealand.
How to try to avoid type 2 diabetes
• Stay physically active and get regular exercise. Aim for at least 30 minutes of moderate physical activity each day.
• Eat healthy food.
• Keep your weight in a healthy range.
Source: Diabetes New Zealand
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