Young Warwickshire mum with life-threatening kidney disease makes organ donor appeal

A YOUNG mother from Meon Vale with life-threatening kidney disease is appealing for organ donors to come forward.

Amber Simmonds, 29, was diagnosed with hereditary polycystic kidney disease (PKD) aged 13. It’s a condition that affects her mum and one of her two brothers. Worryingly the disease has also been passed on to Amber’s three children: six-year-old twins Reuben and Jacob, and Pippa, four.

The Herald shared Amber’s story in January 2023, when she was raising funds for the PKD charity with the aim of trying to find a cure. However since then Amber’s condition has rapidly deteriorated and she is now encouraging people to consider becoming a kidney donor.

“Getting a kidney transplant would give me the chance to see my children grow up and spend more time with them and my husband Chris,” said Amber. “Dialysis is not recommended for long periods of time, it’s not great for your body.

“Every day is a struggle to get out of bed and I am constantly exhausted,” explained Amber.

PKD causes cysts, or balloons of fluid, to develop in the kidneys. These cysts, which may grow as big as a grapefruit, can damage kidney tissue and enlarge the kidneys. They prevent the organs filtering blood properly, which eventually results in kidney failure.

Amber is now too poorly to work, and has had to give up her retail job, which means the family rely on Chris’s salary working at the RSC as a cabinetmaker.

Last summer Amber’s kidney function was at 28 per cent, but has now plummeted to 19 per cent. Doctors have told her that when it hits 15 per cent she will need a transplant – so very soon.

Amber explained: “My kidneys are covered in cysts and are very enlarged. They are pushing against my stomach and lungs, so I suffer from indigestion and get breathless. From this point onwards my health is only going to decline, meaning I am ready for donors to be considered.

“This is an incredibly scary time for myself and my family, I don’t know what the future holds but I know it’s an uphill battle from here in terms of my health.”

Amber’s mother, who also has PKD, received a kidney transplant 18 years ago, when she was 45, from her sister.

“I remember my mum lying on the sofa not even being able to lift her head because she had no energy,” recalled Amber. “I would sit and stroke her hair while she lay there. I saw how much better she was after the transplant which has brought a bit of positivity to me.”

Although Amber could be given a transplant from a deceased donor, doctors at University Hospital Coventry and Warwickshire, where Amber is under care of the renal team, prefer to use live donors as the kidneys are in better condition and will only be without a blood supply for a short period of time between it being removed from the donor and transplanted into the recipient.

“While this isn’t conventional, I’m reaching out to see if anyone would be willing to get tested as my donor, my blood type is O positive, which means I can receive from any O blood type,” said Amber.

And even if you are not an O blood type, donors can enter the paired exchange. This means that if a donor isn’t a match for their chosen recipient, the two of them may be compatible with another pair elsewhere in the country. Removal of the donor kidneys are scheduled to take place on the same day and time so that kidneys can be exchanged.

“I appreciate this isn’t for everyone and it is an unusual request but for me this is for my life,” said Amber.

If you would like to know more about donating contact Laura Fraser at UHCW on 024 7696 7828.