This time last year, I knew next to nothing about kidney disease. I knew next to nothing about the vital role of healthy kidneys in keeping us well. I’m sure you’ll appreciate that a shock diagnosis on a hospital ward wasn’t the easiest way to address those gaps in my knowledge. The learning curve seems steeper when you’re already befuddled and out of breath.
Who knows whether if, this time last year, I’d been more aware, things would have been easier? But knowledge is power, so I have some advice for my former self. While you wouldn’t be so naïve as to mistake this blog for medical opinion, perhaps it will nudge you to check out some websites and be better informed.
- When you wake up feeling vaguely unwell with your cheeks as chubby as a chipmunk’s, don’t wait a week to contact your GP.
- When your feet, legs and ankles start swelling, note that drinking lots of water could make things worse.
- When you’re breathless, shaky and can hardly walk because your legs are like tree trunks, yet your GP still insists a blood test isn’t urgent, pack a book, a cushion and earplugs, and spend the evening in A&E.
- When you’re finally admitted to hospital, and awaiting a bed on the renal ward, don’t ask for coffee. Don’t ask for tomato soup. (Still, I think the staff should have told me to avoid these and other high potassium foods.)
I was lucky my kidneys didn’t get so bad that I needed dialysis, but I’m still devastated. Nine months on from diagnosis, I’m still learning, while struggling to adjust to having a long-term condition and relying on immunosuppressants to prevent a relapse.
Huge thanks to the doctors, nurses, dietitians, phlebotomists, radiographers, lab technicians, pharmacists and support staff who have steered me through the bumpy journey from assessment to treatment and now to maintenance and for my lovely husband who is constantly by my side.
Follow the links for more information:
8 Golden Rules - World Kidney Day
Kidney Care UK, the UK's leading kidney patient support charity
The National Kidney Foundation
and/or test your knowledge with a quiz:
Kidney Knowledge Quiz - World Kidney Day
Kidney Disease Risk Factors Quiz
Charli Mills tells a fascinating story in the post that accompanies this week’s 99-word story challenge. She describes how a song she chances to hear on the radio lead her to hop from memory to memory to mourning a baby who disappeared in the womb.
I doubted I could connect that to a post about kidneys, but the mind works in mysterious ways. The prompt is Gloria, and it just so happens that I’ve got a Gloria in my forthcoming novel, Lyrics for the Loved Ones, which opens for preorders soon. But I’ve just had an idea for a follow-up, featuring my character Janice from Matilda Windsor Is Coming Home, which bridges kidneys and twins. So, of course, I had to write two stories. See what you think.
Janice checks the expiry dates on her toiletries. She swaps last year’s bestseller for a new release. Stows the bag back in the wardrobe. How long will it sit there gathering dust?
The hope when she first packed it. The confidence she’d get the call. The odds reducing with every birthday. Friends have offered, been tested, but never matched.
Her twin would be perfect. But how do you ask a man you’ve never met? Showered by the love of her adoptive parents, she’d never needed her birth family. Until now, when only a kidney transplant could save her life.
Who put those voices in her head?
Mother’s Day in lockdown was certainly different. But surprisingly entertaining, with her boys and their air guitars serenading her via Zoom.
They’d loosely followed Van Morrison’s music, raucous and raw. Altered the words to make it more about her. Two months on, Gloria’s discovered another song about her namesake: Laura Branigan’s disco version is more bouncy. And disturbing. An earworm she can’t shake off.
There’s worse. Has this song released an evil genie from the bottle? How else to explain the phantom plaguing the house? Her mother’s voice taunting her from inside the teapot. Calling her trollop, doxy, whore.