Martin and Alex
Martin Cunningham considers himself to be a lucky man! Despite facing PKD, kidney failure, a kidney transplant, cancer, and more recently major surgery for the removal of a brain tumour, his unending positivity is an inspiration to us all.
As we mark PKD Awareness Month throughout September, this stoic 64 year old, retired civil engineer and PKD Charity volunteer shares some of his PKD journey and the special story of how an angel came to his rescue after a Facebook appeal!
"I was diagnosed with PKD in 1992, when I started getting severe stomach pains. The scan showed cysts on my kidneys, liver and pancreas, along with a football sized cyst sitting near the base of my bladder, which explained the pain, and required surgical removal. I inherited PKD from my mum who died in January 1999 after 2 years on peritoneal dialysis.
So in 1999 I started regular appointments at Guy's Hospital, which gradually got more frequent as my kidney function declined. I had began blood pressure medication, then other drugs to compensate for what my kidneys were failing to do, and Omeprazole for acid reflux. I got itchy skin, I would wake up tired, I would get cramps in the night and also if I stood up for too long - for example going out after work. I would need to pee every 2 hours through the night. I went off some types of food, and ate to live only. It wasn’t enjoyable. I had a couple of instances of haematuria (this is blood in the urine, which around one in two people with ADPKD will get at some time, and is particularly common in people with large kidneys and high blood pressure). However, all in all, I don’t consider I have suffered from PKD. I have been lucky. I don’t get back pain, infections and other things that some people get.
Then my eGFR dropped below 19 in September 2013 and I was transferred to the nurse led low clearance clinic. eGFR - Estimated glomerular filtration rate is a test to measure your level of kidney function and determine your stage of kidney disease. That was when doctors said that I needed to consider transplant. Jo, my wife of 33 years, had always said she would give me a kidney, if she could. But in December that year I put out a Facebook appeal (only to family and friends) along the lines of Jo is plan ‘A’, but I need a plan ‘B’.
To my surprise, it was Alex, my great niece - the granddaughter of Jo's sister - who came forward. Living almost 3 hours north in Birmingham, she didn’t really know me very well, only ever seeing each other at the occasional family gathering. Despite this, and being aged only 32 at the time with a demanding job as a senior nurse, Alex was determined to proceed. It seemed the most natural thing in the world to her - “Why wouldn’t I?” she’d say when Jo and I checked that she was certain about donating.
Martin recovering from the transplant
With her mind made up, intensive screening followed. Until finally, at Guy's Hospital on 7th October 2016 - one week before her 33rd birthday - Alex gave me a kidney. What a wonderful gift, what a wonderful person. Alex was in hospital for 2 days before being discharged to recuperate at a friend's house nearby. She returned to work in the NHS, who had been very supportive throughout, after about a month. I was in hospital for the full week, though I set my recovery back by falling down the last 3 steps at home on the first night out! I returned to work after a couple of months only to retire on 31st December, 2.5 months earlier than planned.
The special thank you cake for Alex
The following March was my 60th birthday, and we gave Alex a surprise party on the pretext of it being for me. A fantastic night. You can see the photograph of the cake we had made for her below! Over time, I recovered; got my life back and now almost 5 years later I have good kidney function with no need for blood pressure medication. I keep in regular contact with Alex, who I love like a daughter and who I’m so proud of. She’s now an Assistant Director of Nursing for Coventry & Warwickshire Partnership NHS Trust, and recently got an MBA!
Of course, it’s not been entirely plain sailing. At a dermatological appointment I was diagnosed with skin cancer on my right temple, which was very quickly and efficiently removed. Everyone post transplant should know about the increased sensitivity to sun. I think it got me before I changed to wearing a full brimmed hat, because with a baseball style hat the sun sneaks under the edge of the peak. Everyone beware! I have now bought some UV sleeves - much better than slapping on factor 50 in my opinion - and they’re cheaper - under 10 quid for 3 pairs.
Unfortunately, there was more to come. Firstly, months of shielding due to the pandemic, and then in July 2021 I was diagnosed with a Meningioma, a brain tumour, completely unrelated to PKD. As I write this, I’m recovering at home from the craniotomy surgeons performed on August 11 to fully remove the tumour, which, thankfully was benign. Despite still feeling woozy and with a large wound atop my shaved head, I am once again feeling lucky.
And although I’m sure there are still more battles to fight, I feel confident of winning. I am determined.
When people hear about my experiences, they often ask how I stay so positive. I honestly don’t have a magic formula; I just rely on a very simple philosophy (Oh and a sense of humour):
"No point worrying until you know what it is and no point worrying afterwards because you can't do anything about it"
We thank Martin for his continued support of PKD Charity and wish him a speedy recovery from his recent surgery. Alex, we thank you for your bravery and generosity.
Martin and wife, Jo
Martin and his 'angel', AlexTo learn more about living organ donation head here.
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