A woman who has just 9% function in one of her kidneys due to a hereditary kidney disease wants to raise awareness on the incurable illness. Katie Banks, 47, from Swansea, has Polycystic Kidney Disease which causes clusters of cysts to develop in your kidneys.
The condition. affects over 70,000 adults and children in the UK. Due to it's hereditary nature, and knowing her mother had died from Polycystic Kidney Disease, Katie decided to get a test at 35 years old to see if she inherited it.
One of the main symptoms of the condition is stomach due to having enlarged kidneys, and often leads people to think that she is pregnant. “I am not pregnant, yet I exhaust myself explaining that again and again. ‘Is it a boy or a girl’, they ask, curious as to why my stomach is so large. Not wanting to hit them with terrible news, I often just go along with it and let them go on their way. It's supposed to be good news and something joyful. But in my case, I'm dying.” said Katie
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She said: “No one prepares you for this. You’re young, you think you are invincible, you will live forever. Then you realise your mother has something, so you think ‘I’ll do the right thing, go see a doctor and if I have it, we'll fix it.’ Only to find out I have it and was told by the doctor that I was taking the news ‘very calmly.’
“I was thinking, what does the Doctor mean? After all, it's the 21st century. I went home and googled and saw that there is no cure and nothing to stop the inevitable.”
“For 12 years I waited. I tried my best to bury my head in the sand and pretend it would be okay - medicine evolves every day. But, here I am today on the verge of dialysis.
“In reality, the waiting list for a kidney is at least five years, but because I have antibodies that will make it very hard to find a kidney that will match, I only have a 4% chance. I’m scared to have hope.”
To undergo dialysis, a patient must first have an operation to create an access point for the machine. This is done in the arm or the writs, by connecting an artery and a vein. Katie has had three operations for this procedure - none have been successful.
In the last 11 years, her kidney functions have declined to 9%, but despite her illness, Katie strives to have a positive attitude. “I think life is like a coin. What kind of life you have depends which side of the coin you want to see. My kidneys will keep declining and there is nothing I can do about that,” said Katie.
“So on one side of the coin I could be devastated by all this. I could cry every day as it’s a lonely disease, because from outside I look fine. Or, I could see the other side of the coin, where I am grateful for that tiny 9% as it has given me one more day of freedom; grateful that at least I have that 4% of hope of receiving a new kidney; for the fact that, at the moment, I am able to drink water as much as I desire; that I can enjoy the sunshine and spend time with my family.”
In the UK, 20 people develop kidney failure every day and need dialysis or a transplant to stay alive. Chronic Kidney Disease, which PKD falls under, costs the NHS £1.45 billion a year, and kills more people than prostate cancer and breast cancer combined. Despite this, kidney research is drastically underfunded compared to other major diseases.
She said: “People don't understand organ failure at all. I try to explain that there is no cure for kidney failure. That even getting a new organ, if you are lucky enough to be a transplant recipient, is only a treatment - not a cure.”
A child has a 50% chance of developing PKD if their parent has a PKD1 or PKD2 gene. Katie has two children, a son Karl, who is 27 years old and a daughter Oli, who is 16 years old. Karl had the test and has also been diagnosed with PKD.
“He's young. He's trying to live life. But how do you live with that realisation? It is really hard. It is hard on all my family,” said Katie. Currently, Katie does not want her daughter to take the test.
The Banks family have been supported by Popham Kidney Support , a kidney charity based in Swansea, which helps renal patients across Wales to receive a better quality of life. Through the charity Katie has received mentoring and been able to call their volunteers to talk about her illness.
However, Katie wishes to connect with other people who are in similar situations and build a community for support. If you would like to send Kaite an email, you can reach her here.
Katie’s husband Richard recently did a Gower bike ride for a PKD Charity and raised £331. He will also be cycling from Cardiff to Swansea at the end of the summer. You can support the charity bike ride here .
Symptoms of Chronic Kidney Disease
In the early stages of kidney disease there are usually no symptoms. You may only be diagnosed if you have a blood or urine test for another matter and the results show a possible problem with your kidneys.
In more advanced stages, symptoms can include:
Tiredness
Swollen ankles, feet or hands,
Shortness of breath
Feeling sick
Blood in your urine
See a GP if you have persistent or worrying symptoms. Find out more about the symptoms of CKD here.
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