‘People congratulate me on being pregnant – but I’ve got an incurable disease’

13 years ago Katie Banks was diagnosed with a a life-threatening condition called autosomal dominant polycystic kidney disease (ADPKD). Affecting up to one in every 1,000 to 2,500 people in the UK, it's believed that between 30,000 and 70,000 people in the UK are living with the condition, according to the NHS.

Here, mum-of-two Katie, who lives in Swansea with husband Richard and youngest daughter Oli, tells her story…

“‘Congratulations on your pregnancy,’ a well-meaning older lady calls over to me. I’m standing on a bus, in Greece, on holiday with my husband Richard. I simply nod and smile but she then makes a big deal of telling a passenger to give up their seat for me. I’m mortified.

It’s a situation I’ve become oddly accustomed to, but I’m not preparing to bring a child into the world. I have autosomal dominant polycystic kidney disease (ADPKD) – a condition that could ultimately kill me.

I have a cyst in my kidneys that will continue to grow until there’s no kidney left. It causes my stomach to protrude. And my kidney, which is meant to clean my blood and rid my body of toxins, will soon be completely unable to function.

I’ve learnt to hide my visible symptom – the swollen stomach – with baggy clothes in the winter. However, in the summer months, especially on holiday, it’s more difficult. Plus, I still want to wear nice things and feel pretty. I have to accept the dirty looks I get for ordering a glass of wine while looking pregnant.

It was 2010 when I was told my body, and more specifically my kidneys, were betraying me.

My mum had ADPKD and as it’s hereditary, I thought it was sensible to get checked out, despite feeling healthy at the time.

When the doctor told me the results of my ultrasound, I was shocked. It felt like my world was coming to an end. Richard was really upset but he tried to be strong for me. We kept a lot of the realities of my diagnosis from the children.

From that day, I don’t think I’ve ever been truly happy, as it’s always in the back of my mind. It’s disconcerting to pretty much know how I’m going to die. It breaks my heart to think of not being here for my children and their future milestones, from weddings to babies.

My mum died from ADPKD complications aged 66, in 2020. She was an incredible woman and I watched the condition steal who she was as a person. She went from being super-active to not being able to get out of bed from exhaustion.

Swelling stomach

That was the year my health started to deteriorate fast, too. We were in lockdown and I was grieving, so I was isolated at this terrible time. I didn’t feel acute pain but rather a constant feeling of being uncomfortable. My stomach started to grow gradually, to the point where I couldn’t wear any jeans, apart from maternity-style trousers.

People often don’t realise I can now barely make it up my stairs without losing my breath. I have to plan everything, even a trip to the local shop, to ensure I can take multiple breaks. Mentally, I feel young and active, but my body is not in agreement.

I don’t feel very attractive, or sexy, and I feel guilty as I think Richard’s life would be better without me. He tells me, “Don’t be silly, I love you. I only want to be with you.”

I’ve finally accepted my appearance should be the least of my worries and I’m just focused on staying alive so I can have a kidney transplant.

I’ve also had to accept what’s happening to my body and hope for a miracle. Both my kidneys are currently at just 8% functionality. No medication can cure me. I monitor my blood pressure and avoid eating too much potassium, as it can poison me. Potatoes, bananas and red meat are strictly off limits.

I worry about my son, Karl, who lives in Australia, as he was diagnosed with the condition in 2018. I try not to tell him too much about what I go through, as I don’t want him to be scared about the future. I’ve advised my daughter Oli not to get tested until she absolutely has to. But, ultimately, it’s her choice.

The hospital is now waiting for me to agree to start dialysis – something my mum refused. I think she may have been in denial about what was happening to her.

Dialysis involves being hooked up to a machine to remove waste products and excess fluid from my blood, for a minimum of four hours every other day. once I start, I’ll have to keep having it done.

It won’t improve my situation but will mean I can maintain this level of health until I get a kidney transplant. The average wait time for a donor is five years. I’ve been waiting for just over a year.

Waiting for a donor

Having dialysis means I’ll lose the freedom I have left. They’ll be no holidays and if something traumatic happens to my family, or I’m having a bad day, I’ll still need to be hooked up to the machine at the hospital. I’d have to give up my job at Women’s Aid, too, which currently gives me some semblance of my old life.

My husband, sadly, can’t donate a kidney to me – he was tested and isn’t a match. But we’ve joined a donor sharing scheme. If he’s a match for someone else who has a willing donor that’s a match for me, then we’ll swap! I’m always willing my phone to ring.

I’ve been disappointed by how few of my friends have had themselves tested. I know it’s a big ask – it’s a major operation, not just like borrowing a dress – but it’s made me assess how strong the relationships in my life really are. I feel angry with myself for having this view. It’s a mind game that I hate.

I’ve also found comfort in a women’s ADPKD support group. We meet up for coffee once a month. It’s nice to be heard, as I feel misunderstood a lot of the time.

I’m telling my story to raise awareness and highlight how much research still needs to be done. The Polycystic Kidney Disease Charity is incredible, supporting me through this journey, but it needs more donations. Kidney research receives almost no government funding.

I’ve got so much to live for – my wonderful husband, who’s shown me unconditional love, and my beautiful children. They are the reason I wake up each morning.

I have hope, but I’ve still got so much to overcome.”

Visit pkdcharity.org.uk to discover more about the disease and to donate.


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