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A kidney diagnosis messes with your head

07 March 2022

Coping with the pandemic has been hard enough for most people, but for Tracy Mead, it has meant coming to terms with her recent kidney disease diagnosis without the help of her usual support network.  

Tracy, 53, a cleaner from the west coast of Scotland, was first diagnosed with high blood pressure in September 2019. “I was referred to a kidney specialist, but at that point my kidney function was fine, and I was given an appointment for August 2020,” she says. “This was cancelled due to the pandemic, and I was told to go for regular blood pressure check-ups.” 

Tracey Mead and her dialysis machine
Tracy and peritoneal dialysis machine at home

On one of her trips to the GP, it was discovered Tracy’s blood pressure had gone “through the roof”. Urgent tests at hospital revealed that her kidney function had declined rapidly, to seven per cent, although medics are still unsure why.  

“Initially they thought it could be lupus, but they ruled that out,” says Tracy. “It could be a one-off and if I have a transplant, I’ll never have the issue again. But it could be one of these things that comes back and attacks the new kidney.” 

Tracy is waiting for official confirmation she is on the transplant list and in the meantime, her husband Peter has gone through tests to see if he can donate a kidney. “He’s quite a good match, but he may also be entered into the shared donation scheme (where I receive an even better match from another donor while he donates his kidney to someone else). In the meantime, while we wait, I’m on overnight peritoneal dialysis,” she says.  

Adapting to dialysis

Physically, Tracy has found she has adapted well to the peritoneal dialysis (PD) regime. “I didn’t realise how ill I felt before,” she says. “I suddenly realised, ‘I don’t feel like that anymore, I don’t feel sick, I don’t feel yuck.’”  

However, the speed at which Tracy’s kidney went downhill has meant she’s found her illness hard to come to terms with mentally. Initially, she says, “I’d think, ‘Oh I have to get my head around this,’ and then suddenly there would be a new development. It’s all been really hard to comprehend. I just don’t think I’ve dealt with what’s happened yet.” 

Mental health - a taboo subject

One of the issues Tracy has faced is that because her body has responded well to the PD, she feels unable to discuss her mental health worries and fears for the future with medical professionals.  “It’s a taboo subject,” she says. “People don’t want to discuss it. Instead, I’ll be told that the numbers are good, and my blood tests were healthy, and I should focus on that.  

“So it just simmers under the surface. I understand that because of Covid everyone is really stretched, and it’s made worse by the fact there are no groups where I can go and meet someone in the same situation. It’s hard even to meet friends and have a coffee and a cry, or a laugh. To deal with things emotionally.” 

Tracy Mead
Tracy on a walk in woods with family

Family life has changed

Instead, Tracy has felt isolated. Her diagnosis has affected family life – because of the risk of catching Covid, she and Peter have mostly dropped their usual Saturday afternoon trip to the pub, and it’s harder for friends to pop round. “My husband and daughter have been really supportive,” she says, “But sometimes you need to talk to people in the same boat as you. I feel guilty that my family’s lives have changed as well as mine.”  

Luckily, Tracy has a friend nearby who is also on PD, and she has been a great support. She suggested Tracy look online for more advice, and join groups and forums. Finding people on the internet who have been through the same thing has really helped, but Tracy thinks that her dialysis nurses or consultant could have suggested this first. “I think that the medical profession should be able to point you in the right direction for mental health support, even if they can’t provide it themselves. 

“That’s why the Kidney Research UK campaign is so timely. People don’t realise how much a kidney diagnosis messes with your head. The hardest part for me is trying to be the same person still, when inside you feel very different. You want to react differently to things, but everyone expects you to be the same person.” 

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