Saturday, 30 January 2016

Mortality in Focus

The scariest thing about my recent GFR reading is that it brings thoughts of my own mortality into sharp focus. From the moment I was diagnosed with CKD at the wrong end of stage three, I realised the odds of me making it to 80 were on the low side, but as long as my GFR readings were stable I put it to the back of my mind and got on with life. But this new realisation that unless my readings plateau again I could be looking at transplant listing and dialysis in three to four years has started me thinking deeply about the long term consequences of my condition.

The analyst in me has started doing the numbers; the average life expectancy for a patient on dialysis is just five years, although it’s not uncommon for some to live twenty or thirty years on dialysis. The average transplant lasts around ten years though some end up receiving several over the course of their condition. These numbers are also improving with developments in medical science and recent breakthroughs in cloning organs open up real potential in the next few decades. But it’s still very scary.

What petrifies me most is the impact on my family, I desperately want to see my children grow to adulthood. The thought of leaving them without a father, of missing the key milestones they have ahead, threatens to crush me. Behind not being there at all is the pressures it will place on them when my condition develops significant complications like dialysis, I’m sure we’ll cope, but the older my kids are and the more financial security we can get in place first the better.

But my initial researches do leave plenty of room for hope, life expectancy on dialysis appears to be heavily dragged down by the fact that many people entering the process are advanced in years and have other serious health complaints like heart disease. Thankfully I’m relatively young, my health is good excepting the CKD, I don’t smoke, I’m a moderate drinker and the only currently identified barrier to transplant listing is my sizeable weight, something I’m now determined to tackle. My occupation is also one that with reasonable adjustments (if required) should be maintainable on dialysis. All things considered there are many people in far worse predicaments out there and I need to focus on getting the most from life now whilst preparing for what the future might throw at me.

Thursday, 28 January 2016

A Beginning


I’m starting this blog to document my personal experience of living with Chronic Kidney Disease (CKD) (CKD), my thoughts on the impact the condition has only my life and that of my family. A sounding board and a record of my journey to maintain a normal life for as long as possible.
I am a man, in my late thirties, living in Surrey with my wife and two young children. I was diagnosed with Stage 3 CKD around three and a half years ago with an GFR around 30. It wasn’t as big as surprise as it may have been for some people as there is a history of kidney issues in my immediate family and I’d known for several years that one of kidneys was unusually small although there were no a side effects to set alarm bells ringing. Since the diagnosis I’ve been on medication to reduce my blood pressure with visits to the nephrology clinic very four months.
The reason for starting this blog now, and not three years ago, is that in January 2016 I was advised by my consultant nephrologist that my GFK has now fallen to 27 and if it continues to trend down I could require dialysis and transplant listing in as little as three to four years. Up to now my CKD has had little negative impact on my life; apart from taking my pills, cutting back on salt, but sadly failing to get my weight under control, but now most substantial changes are required to ensure I see my kids grow to adulthood.