As we all rallied to raise awareness of kidneys and kidney health for World Kidney Day, and Salt Awareness in March, we shared the story of one devoted husband who gave the biggest gift of all to transform his wife’s life.
In his own words, Keith tells their story…
When Mary and I met in 1967 I soon became aware that her mother was becoming seriously ill with complications resulting from chronic kidney failure. We knew that Polycystic Kidney Disease is hereditary and there was a 50% chance that Mary had inherited it. In those days of course, there was very little that could be done. Dialysis was available but was pretty grim – not as many of the options now available – and transplants were a distant dream. Her mother and most of her mother’s many siblings never made it to 60.
Keith and Mary on their wedding day, 1971
Before you click to the next item, thinking this is a dismal story, please stick with it – trust me this one has a happy ending!!
Mary was eventually diagnosed with the disease in 1990 and was told she probably had 5 years before she’d be on dialysis and with not a brilliant prognosis after that. Her reaction – as anyone who knows her well would imagine – was “Not me mister”. She constantly nagged her doctors to tell her what she needed to do to extend the timescale and promised she would do whatever they said. They told her that the lifestyle and diet changes needed were so onerous that they did not know anybody who could stick to it well enough and for long enough to make a difference.
Still, she started a comprehensive study of all food and drink to understand their characteristics and worked out what needed to be avoided, or limited, to have the best effect on her progress. I won’t bore you with the details, but it was a fantastic balancing act and what she was left with meant going to restaurants became a nightmare as we studied menus and worked out what she could choose and how she could bully the chefs into modifying things to fit! She also became a bit of a fitness freak – eventually even getting me to take exercise and diet seriously (maybe she was already planning for my future?).
Having made it to 15 years past the forecast dialysis deadline, in 2009 her consultant advised her that dialysis in the next 2 years would be inevitable, and started planning the process. Even then she refused to give in and renewed her efforts to find ways in which to delay this. Eventually her nutritionist gave up – saying that Mary knew far more about the relevant food values than she did and would not benefit further from her input. However, finally, in 2013, her consultant told her that she would definitely need dialysis within a year. We were determined to avoid this if at all possible.
This is when I entered the picture. We asked about transplants and were told the probability of getting a kidney from the transplant register was very low as there were not enough donors to meet demand. At that point we asked about the possibility of a live donor being suitable (i.e. me). Normally, we thought, this had to be a very close family member, but it turned out there was a small chance I could be suitable.
I then subjected myself to a massive series of physical and psychological tests that pushed my dignity to limits I didn’t know I could reach. These went on for 6 months, with each test being the next hurdle to overcome. Eventually we got the all-systems-go, which is when I admit I started panicking a bit. I’d never been in hospital in my life and am unbelievably squeamish.
The date for the op was given (30th April 2014) and we started psyching ourselves up. Then at 10pm on 29th – after we’d been admitted and had our last meal before the op planned for 8:30 next morning – the op was cancelled because Mary’s sodium levels had dropped dramatically as a reaction to the immunosuppressant drugs she had started on the previous Saturday. I was sent home, while she was kept in for a couple of days to stabilise her. All we could do then was wait for a new date.
Keith and Mary with their family, Christmas 2019
After repeating a few of the compatibility tests a new date was set (4th June 2014) and we started preparing again. We were finally admitted on Tuesday 3rd June and the op took place on the 4th. By this stage I was aged 66 and Mary 65.
What happened next was miraculous. I was up and walking about by 8am the next morning and eating normally by the end of that day, even though I still had tubes coming out of me in all sorts of places. On Saturday I had my epidural pain relief and all the tubes removed and apart from some discomfort when I coughed or moved suddenly, had virtually no real pain throughout. After some final blood tests and some tests from a physiotherapist to make sure I could walk up and down stairs and do deep breathing exercises, I was discharged, just 5 days after surgery. Once back at home, my daughters helped me with daily chores but otherwise I operated normally. Obviously I couldn’t do anything too strenous for a couple of months.
Mary’s progress was almost as impressive, despite her operation being much more complex, and she had the massive added bonus that she was feeling on top of the world – with most of her previous symptoms either gone or much reduced. By day 6 she had all her tubes out and was walking around the hospital with a bit of pain when she moved. Apparently my kidney was a keen and willing worker (just like me, I'd like to think!!) and is performing like a trooper. The surgeon said it produced 500ml of urine in the first 15 minutes! She was discharged on Tuesday 10th June, 7 days after surgery.
Preparing for a night out, 2020
So, in summary, it’s been a long struggle, but the outcome was amazing. We have the utmost respect and gratitude for the fantastic renal team at Queen Alexandra Hospital, Portsmouth who took us through the whole process and made it all possible. Before long we had our old life back and were able to look forward to a long and active retirement doing all the things we planned all those years ago in 1971 when we promised to love each other “for better, for worse, in sickness and in health”.
I feel utterly elated that I have been able to transform my wife’s life with little effort on my part.
Keith and Mary celebrated their Golden Wedding anniversary (50 years!) on April 12th. Congratulations from PKD Charity!