Source: BBC
- After years of pain and dialysis, she has just had a kidney transplant
- Her mother, brother and two sisters have the same condition
- Mandy found out her two youngest children have inherited the disease
Image copyrightPHIL COOMESMandy Littlewood is sitting on a park bench with her husband John, their two small dogs are chasing each other up and down the sloping field.
“The kids love to come down and play here as soon as they get home from school,” Mandy says.
“It’s so convenient as it’s just down the road from our house.”
But she knows the days of playing carefree in the park are numbered. Millie, 10 and Zac, nine, have inherited a life-threatening disease from her.
Image copyrightPHIL COOMESMandy has polycystic kidney disease. It causes fluid-filled cysts to grow in the kidneys over several years. Symptoms, such as chronic pain in the abdomen and urinary tract infections, usually appear between the ages of 30 and 40 but can appear as early as childhood. Sufferers are placed on dialysis and eventually need an organ transplant.
The disease is hereditary and affects Mandy’s mother, her sister and two or her aunts and uncles. Her grandmother died from the disease. Someone affected by the condition has a 50% chance of passing it on to their children.
“I’ve never felt angry about having it as it isn’t anyone’s fault – it’s just something that happens.”
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Mandy didn’t realise she could pass the condition on when she had her first son, Callum, at 19. However she and her husband John knew of the risk before having Millie and Zac.
“John and I had discussed the possibility of passing on the condition but we knew we wanted kids together. I had hoped they would have been spared like my youngest sister. I felt horrendous and so guilty when they were diagnosed.
“I’m glad we got them tested though because now we know to watch their blood pressure and be extra careful if they get infections.”
Mandy says the condition only really started to impact on her life six years ago when she was 33.
“I had sharp stabbing pains in my back and side almost constantly. It was too much to cope with and I was prescribed anti-depressants to help with my mood.”
Image copyrightPHIL COOMESShe had her first kidney removed in 2011 and was placed on the transplant list in 2012. A year later she was placed on dialysis, which left her feeling exhausted.
“It’s taken over my life,” she says.
“I had to stop working as a learning disability nurse in 2013 and then stop driving at the start of this year. I didn’t like to make plans to go out, in case I had to cancel because I felt rubbish.”
Mandy and her family live in Huddersfield – two taxis and a train ride from specialist kidney services in Leeds. It’s an issue many people who live far from a larger teaching hospital face.
“John gave up his job as a floorer to take care of me and the kids so we have struggled financially. It costs £30 in taxis and train fare for John to come with me to a hospital appointment.”
The NHS first provided patient transport to take Mandy to Leeds for dialysis as it was the closest place with a spot available. She later received dialysis at Wakefield.
“The travel was always a nightmare,” says Mandy.
“The patient transport turned the four-hour session into a day-long ordeal. I would be picked up hours before my appointment and then have to wait around after it had finished. As I went three times a week I felt like I was spending my life in hospital.”
Image copyrightJOHN PAUL LITTLEWOODAfter two years a spot opened up at the local satellite dialysis unit in Huddersfield. It was a great relief to Mandy. Dialysis left her feeling sick and she was given meal replacements after losing a lot of weight.
“Everything tasted metallic. The kids would come in for their tea and I would have forgotten about it because I wasn’t hungry.”
This summer there were 141 people in West Yorkshire and 5,066 in the UK waiting for a kidney-only transplant. Waiting times vary due to clinical need and matching between patient and donor. The average waiting time for a kidney-only transplant is 944 days.
In July this year, Mandy finally got the call that there was a possible match.
“They rang early in the morning. I had to wake John and the kids and called my mum to come and take care of them while we rushed to Leeds General Hospital.”
The mother-of-three was told she would have a long wait when she arrived at hospital because it was a ‘heart-beating’ donor. She was then left for hours in a small TV room in St James’ Hospital in Leeds.
“I know they were busy but I found that very upsetting. I later found out a lot about my donor’s health problems in case I didn’t want the organ. It made me feel very sad for him. He had given me such a gift.”
What is polycystic kidney disease?
- About 70,000 adults and children in the UK have Polycystic Kidney Disease
- It causes fluid-filled cysts to grow and multiply in both kidneys, eventually causing them to fail
- More than half of sufferers will have kidney failure by the time they are 60 years old
- High-blood pressure, pain and urinary tract infections are common symptoms
- The form Mandy has is the world’s most common inherited life-threatening condition
For more information visit the PKD charity website
Categories: Disease, Europe, Health, The Muslim Times, UK