A woman with a rare kidney condition has told how her beloved husband was diagnosed with stomach cancer and given just months to live.
Karen Whittaker’s condition meant both kidneys were removed and she was waiting for a transplant from her husband Andrew Kyranides.
But when Andrew was told he had stomach cancer, Karen’s thoughts turned to treatment options and fundraising for him.
Determined to raise £90,000 for private immunotherapy treatment in a bid to prolong Andrew’s life, mum-of-four Karen, 54, also has to decide whether to instead accept a kidney from her son, John, 34, a personal trainer, who is also a match.
Diagnosed with polycystic kidney disease (PKD) – a genetic condition causing fluid-filled cysts to grow in the kidneys – at just 17, which she has passed on to her eldest daughters, Karley, 32, a beautician and NHS recruiter Jessica, 27, she says the gravity of the decision is almost too much to bear.
Karen, of Benfleet, Essex, who only has one child, Georgia, 23, a stay-at-home-mum, with fellow driving instructor Andrew, 51, explained: “John has said he will go ahead with being my organ donor, but I’m undecided on whether to accept.
“Putting my son through a major operation is something that I can’t get my head around at the moment.
“It’s hard not to feel guilty about passing PKD on to my eldest daughters. If it wasn’t for my bad genes the children wouldn’t have this hanging over them.”
She continued: “So far, they’re absolutely fine – and at least John, Georgia and my four grandkids don’t have it – but I don’t want to put my son’s life in danger.
“And my main focus, right now, can’t be my own transplant, it has to be getting Andrew back on track. The alternative isn’t an option.”
Karen’s PKD journey began in 1983, after her judo instructor dad, John – who died from kidney failure two years later, aged 49- was diagnosed with the condition and, discovering there was a 50 per cent chance she could inherit it, she was tested and the result was positive.
“By the time Dad was diagnosed his cysts had turned cancerous,” she said.
“I told myself that wasn’t going to happen to me. I was only 17 and thought I’d live forever.”
Told by doctors it was a “waiting game,” Karen quit drinking, to ease any strain on her kidneys, and had annual blood tests to check her renal function.
Already a mum-of-three when she met Andrew in 1994 in an Essex nightclub, she was living life to the full and had never had any kidney trouble.
Soon dating, the couple enjoyed a whirlwind romance – moving in together within six months and having a baby girl in 1997.
Finally, during a romantic holiday in Cyprus in 2003, they discussed marriage.
Karen recalled: “We were sat having dinner one evening and we somehow ended up on the topic of marriage.
“It was less of a proposal and more of a discussion. The next day we went out and bought a ring from a Cypriot jeweller.”
Again, life got in the way of planning a wedding and in June 2013, when Karen found herself bent over in pain every time she tried to take a deep breath – the first sign of her kidneys failing – they were still simply engaged.
Rushing to Southend University Hospital in Essex, a CT scan and blood tests revealed that her left kidney had become so enlarged, because of cysts, that it was no longer functioning.
“There was no hanging about,” she explained. “I knew my kidneys had finally caught up with me.
“I was in hospital for four weeks, by the end of which doctors told me they had no other choice – the kidney had to come out.”
She continued: “They told me it wasn’t functioning at all and if it wasn’t removed the cysts would keep growing – making the infection worse.”
Uncertain about her future, marriage suddenly seemed incredibly important to Karen, so doctors postponed her operation to give her time to organise a small family wedding, on September 13, 2013, at a local church.
“It was the best day ever,” she recalled. “The whole family arranged a lot of it because I wasn’t well.”
She continued: “It was very rushed, we hadn’t been planning it at all, but it suddenly seemed very important. I didn’t want to die a spinster.”
Too ill for a honeymoon, in December 2013, Karen had her left kidney removed at Southend University Hospital, where she was an inpatient for four days.
But, six months later, her remaining kidney developed an infection.
Told by doctors that she had an estimated Glomerular Filtration Rate (eGFR) – used to measure how well the kidneys are cleaning waste out of the body – of just 13, compared to the normal eGFR of over 90 for a healthy adult, Karen was classed as having the most severe stage of kidney failure – stage five.
This meant she had lost almost all kidney function, according to the NHS, and was eligible for a transplant.
Put on haemodialysis, the most common type of dialysis – where blood is extracted through an IV and filtered through an external machine – for 12 hours a week, spread over three days, she said: “It just became part of my routine, the same as if I was working for three days a week.”
She continued: “For a while, I was still instructing on Tuesday and Thursday, but it started becoming too much.
“The poor students couldn’t book their tests when I was in dialysis.
“And it made me feel fatigued and tired.”
Then, in September 2014, less than a year after losing her left kidney, Karen was back in Southend University Hospital having her right organ removed.
“Surgeons told me my second kidney had pretty much packed in and that I needed a kidney transplant,” she said.
“But I couldn’t have one until my second kidney was removed, or it could spread disease from the old one to the new one.”
She continued: “After surgery, though, I still couldn’t have a transplant, as my blood pressure was so low from the dialysis that I couldn’t be anaesthetised.
“It’s the catch 22 so many people needing a new kidney face – they’re too ill because of dialysis to get one.”
While she waited to reach full strength, Karen’s whole family were tested to see if they were a match and, much to everyone’s amazement – Andrew and John were both suitable to donate.
She said: “I was tearful, to say the least. I didn’t want to put either of them through the operation, because I knew how much it hurt.
“But, after a lot of sleepless nights, I reluctantly agreed to Andrew being my donor.”
Still, the news was bittersweet, as Karen’s blood pressure remained too low for her to survive a transplant for the next five years, so she stayed on dialysis.
Then, from mid-2019, her health began to improve after she started being given dialysis at home.
She said: “After five years of dialysis, I was told I was eligible to have a machine at home and I’ve been loving life ever since.
“It means I can choose which days I have on and off it. I can plug in any day of the week, for however long I want.”
She continued: “I choose to do four or five days a week, depending on the schedule – as long as I do 12 – 15 hours a week with no time off, it works.
“Doctors told me that doing it five days a week was why my blood pressure was improving.
“The machine doesn’t need to pump with the same degree of force, which, in turn, puts less strain on your heart.”
She continued: “Finally, at the start of 2020, I was told that, by the end of the year, I could look into having a transplant.
“And Andrew was more than willing to be the man for the job.”
Then the tables turned and, after suffering with severe acid reflux for the best part of a month, suddenly Andrew’s health became their focus and he was referred for an endoscopy – where a thin tube with a camera is inserted down the throat – at the end of June.
“He’s had heartburn for years,” Karen said. “So, when he first started complaining after dinner about his acid reflux, we didn’t pay a lot of attention.
“When I heard him making an appointment with the doctor, I knew it must be serious.
“He had to go for the endoscopy on his own, because of Covid-19.”
Taking a biopsy from the stomach, after discovering a small growth, a week later the couple were invited in to see the consultant and, to their horror, Andrew was told he had stomach cancer.
“I knew as soon as they asked both of us in it wasn’t going to be good news,” said Karen.
“They had found a 7cm tumour and it was definitely cancer.”
A CT scan performed that week revealed the grave news that Andrew’s cancer had spread to his oesophagus and liver.
A week later, he was officially diagnosed with high grade neuroendocrine cancer – which, according to Cancer Research UK, is a rare form of the disease that develops in the cells of the stomach.
“Doctors told us that, because of how far the cancer had spread, there was no hope of removing it,” Karen explained.
“The only available treatment on the NHS is palliative chemotherapy, to shrink the tumours – adding months, not years, to Andrew’s life.”
Beginning the treatment earlier this month at Southend University Hospital, Andrew was told he needed six sessions of chemotherapy, administered every three weeks.
But Karen is now determined to find a way of funding alternative private treatment and is trying to raise £90,000 for immunotherapy, a form of treatment which encourages the immune system to attack cancer cells.
She said: “We’ve had a consultation to discuss private immunotherapy at the Royal Marsden in London, but they can’t tell us if Andrew is a suitable candidate until after the NHS chemotherapy.
“We would have to pay for any treatment at the Royal Marsden. Andrew’s cancer is too far gone to be treated with anything else other than palliative chemo on the NHS.
“We’ve launched a GoFundMe appeal and set a target of £90,000 but we have no idea of how much it will cost, as some clinics abroad charge £10,000 a week.”
For now, her own kidney transplant could not be further from Karen’s mind.
She said: “After six years on dialysis, I’m the healthiest I’ve been on it.
“They’ve told me I can stay on it indefinitely. I know some people who have lasted on it six months and other people who have done 15 years – so who knows how long I can continue.”
She continued: “Anyway, having a kidney transplant, at the moment, couldn’t be further from my mind.
“Andrew and I should have been enjoying holidays and time with the grandchildren. Instead, it feels like we’ve been robbed of our future.
“I was told by the end of 2020, after six long years, that I might finally be ready to take Andrew’s kidney. Now we’ve been told he has just months left to live.”
She continued: “It’s suffocating, it’s all I can think about. That’s why we’re looking into private treatment – we’ll do whatever we can to prolong his life, no matter what the cost.
“Life without Andrew is simply incomprehensible for me.”