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0300 111 1234



Grossly enlarged kidneys are common for many people with PKD, often leading to severe pain, infection and even mobility problems. Kayla, a 38 year old teaching assistant, wife and mum tells the story of having surgery to remove kidneys that weighed the equivalent of several bags of sugar, plus her hopes for a new future thanks to her selfless sister.   

"From a young age I knew I had PKD. A strange jumble of 3 letters which I didn't properly understand until I accessed the internet and had a good read. I inherited the disease from my dad, whose mum had 2 transplants before she died. His brother and sister are also affected, and all 3 have had transplants. My dad's new kidney was donated by my brave mum! I grew up attending Pendlebury Children's hospital once a year - "Pee into this cup, let's check your height, weight, sharp scratch etc" and "we'll see her again in 12 months, everything seems fine at the moment" were commonplace to me. Great I thought.

I then moved into adult outpatients and eventually to Salford Royal where my care has been for the last 20 years. All was really well. That was until I had my second child at the age of 32. I lost 40% function in that pregnancy and never regained it. Consequently my kidney consultant, Dr Grahame Wood, put me on Tolvaptan, medication that has been shown to slow the progression of PKD. Oh, the excitement, the nerves. I drank, I peed and I felt pretty good. However I also started to vomit a lot, developed regular infections, and was very weepy.

Kayla and Family

Kayla, and her family 

I attended renal psychology to help to deal with the now realisation that my kidneys were actually going to fail. Unfortunately Tolvaptan did not work for me. My kidney function continued to decline. I then became more aware of my PKD belly; my unwanted twins as they became known. My kidneys had grown so large, I looked pregnant.

2020 was rubbish in lots of ways but for me it was the turning point. By October the pain, infections and size of my kidneys had become all too much. I was on strong pain medication and sleeping tablets, and conversations about a nephrectomy (when one or both kidney are surgically removed), and live donors were had.

So there I was, mum of 2 boys faced with dialysis, nephrectomy and transplant aged 37. However, as scary as it may sound it wasn't. My sister, Becky, who's 36 and works in social care, volunteered her kidney straight away and although I was reluctant she ploughed into workup.

I was referred by surgeon, Mr David VanDellen, at Manchester Royal Infirmary for the nephrectomy, and in January 2021 the transplant workup began. Chest x-rays, blood tests, tissue typing, ECG, echocardiograms, and scans all followed. Not forgetting - due to the pandemic - telephone appointments, mask wearing, shielding, and more covid swabs than I can count!

Kayla recovering from the nephrectomy

Kayla recovering from the nephrectomy

Then I got the call for my pre-op appointment for the nephrectomy in May - Another questionnaire, more blood tests, an ECG, and then a wait for a date. The big day finally arrived; 18th May 2021 at 7.15am. 

I changed into my hospital gown and waddled (as was now my walk) down to surgery. All with a smile. Everyone was so kind and reassuring. Until this moment I was OK but suddenly, thinking of the enormity of the operation, I was scared.

However, 6.5 hours later I woke up in recovery. My two huge kidneys were gone, I was 8kg lighter and in less pain - despite the operation - than I'd been in in months. I was in hospital a total of 19 nights. Unfortunately I did have a few issues with blood pressure, hemoglobin levels and my temporary neck line. 

(* Kayla's kidneys after removal can be viewed here. Please be aware: This link contains graphic images which some may find disturbing).

Thankfully I'm now home and dialysing 3 times a week at the satellite unit in Bolton. It's a roller coaster.  Some days it's great. You feel energised and ready to face the world and others you feel exhausted, sad and achy. I've had headaches and nausea, extreme exhaustion and cramp but it keeps me alive and for that I'm so very very grateful.

So the next part of my journey is transplant. Becky's workup is finished and we're due to have surgery on August 31st. I will never be able to thank my sister enough for this gift she is giving me. Just amazing! 

What most people don't realise is that your kidneys are responsible for so much in your body. Many are shocked that I can no longer pass urine, or that I have to regularly inject myself with EPO (often people with kidney failure are unable to produce an important hormone called erythropoietin or EPO, which can cause your red blood cell count to drop and anemia to develop), have iron infusions, and I am restricted to only 500ml of fluid a day.

Your kidneys are amazing little beans that quietly work away, regulating all your vitamins and minerals, cleaning blood and removing waste products, and yet people rarely pay them any attention."

We're happy to report that the transplant took place as planned on August 31 2021 at Manchester Royal Infirmary and Kayla and Becky are now home. We wish these remarkable sisters a speedy recovery - Your generosity and bravery are an inspiration! 

Thumbs up from Kayla and Becky

It's thumbs up for the transplant from the sisters 

Kayla dialysis

Kayla looking forward to an end to dialysis 

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