CKD on BBC News

There's been a couple of interesting stories around CKD in the past week or so. There's this positive one about a guy who has developed a successful dialysis app that assists people in finding treatment whilst travelling. Then there's this not so positive one around the shortage of kidney donors, something that is especially prevalent amongst ethnic minorities.

Nephros Writes

Yesterday I launched my new blog "Nephros Writes". It's where I'm going to start publishing stuff about the stories and poetry I've been working on, along with occasional commentary and reviews of things I've been reading, watching and listening to. Basically stuff that up till now has largely resided in my notebooks or in half-finished drafts, and stuff that doesn't really belong on this blog which is mainly about my CKD and other gripes about the 'real world'. I started by republishing the poem I wrote back in October about CKD.

Trawling the January sales

I hate others buying me clothes, my size and shape means getting clothes that fit nicely, or that aren't hideous can be challenging. I can't trust standard sizes, because they're not really standard, and you can't trust the cut without trying on, many a time I've found a pair of trousers that fit my waist but then have inexplicably narrow legs, as if designed for a ball shaped person with pipecleaner legs! So every year I tell people not to buy me clothing as gifts, and every December this is ignored, and every January I take the unwated clothing back to be refunded or exchanged.

So over the last couple of weeks I've made my annual January trip to the shops. I don't like shopping, bookshops excepted, but it's a necessary evil and I could do with a few new shirts for work. I was hoping to snag a bargain amongst all the seasonal shite and leftovers hauled out of the store room; the better quality, well designed stuff that looks good year in year out generally stays full price, but you do get the odd bit of luck. Sadly, I didn't have any luck. There was no shortage of shite on sale, but one thing that stuck me looking at shirts is how many, nominally good quality shirts there were on sale, but in unusual sizes. I typically take an 18 inch collar regular fit shirt, tailored and slim fit are too tight for someone my size (slim fit is for bean poles, tailored fit is basically slim with regular shoulders). There were an awful lot of slim and tailored fit shirts on sale with 17 to 20 inch collars, which when you think about it is a pretty niche market, Okay, you might get some roid head musclemen with slim wastes and big necks who rock a tailored 17 inch collar shirts, but a slim fit shirt with a 20 inch neck?  

A reprieve of sorts

Okay, I had my Nephrology appointment last week and the result was something of a reprieve. I weighed in at 114kg, reflecting too many sweets and not enough exercise over the holidays, but the main thing was my GFR had gone back up to 31. Last time out it had dipped to 25, raising fears I was sliding towards failure, but the consultant now thinks my kidneys were 'too dry' when the previous test was taken. It doesn't stop the inevitable, but it pushes back the horizon and I’m grateful for that.

I had been a little worried the test results had been compromised. The day after bloods were taken I got a call from the surgery saying one of the four vials had been damaged in transit and 'could I come back for another test'? At the time I was on the M40 heading north for New Year, so that was a negative. Fortunately, it seems the damaged vial was one of the less important tests. My blood pressure is good, so my medication has been left alone, but I’ve been told to watch my potassium levels as they’re on the high side. The potassium may well be the culprit behind my muscle cramps and probably means the end of peanut based treats.

Whilst I was there I handed in my fourth semen sample for andrology analysis; twelve months on and I’m still don't waiting for the all clear from my vasectomy (although I do know my fertility is severely limited). 

Looking forward, looking back

This will almost certainly be my last post of 2017, I'm currently back up North visiting my family for New Year. 

It has been a strange old year, certainly a busy one, hence the limited posts, and maybe it marked a turning point in the managed decline of my kidneys. The dip in eGFR reported in October was a sharp reminder my kidney function is on borrowed time, in a couple of weeks I’ll get my next set of numbers and we’ll see if has dipped again. My weight has pretty much flat lined around 113kg, not ideal, pretty much where I was ten years ago, but at least I’ve avoided ballooning to the kind of weight I was five years ago.

There has been the ongoing farce of my vasectomy. The same day I go to my next Nephrology appointment I’ll be submitting my fourth andrology test to try and clear up the little matter of non-motile sperm. The GP will also hopefully have received a response from the surgeon who carried it out.

There are lots of positives ahead in 2018; I have my new job starting in early January and I’ve started to get my shit together for a podcast project I’ve been planning for a while (more about that soon). I’m going to make more of an effort to post here; perhaps broaden the scope a little bit and more importantly tackle some of the big topics I’ve been mulling over like the implications of ‘presumed consent’ for organ donation. On the CKD front the GP’s decision to refer me to the ‘Healthier You’ programme could also provide the next much needed step change in my lifestyle.

Happy New Year!

My poem about CKD

I wrote a poem about my CKD back in October. It was my submission to a competition run by my employer’s Disability Staff Network Group (DSNG) to publicise ‘International Day for Disabled Persons’ on December 3^rd. Unfortunately I didn’t win, I didn’t actually hear anything at all, I only found out who won yesterday when I did a bit of searching across the staff intranet.

I actually joined the DSNG at the end of February and I’m still waiting to hear back about upcoming meetings and events. To give credit where it’s due the mental health stream is very active; with workshops and drop-in sessions heavily publicised, but I suspect this is due to the efforts of a few committed individuals and overlap with the corporate health and wellbeing programme. To be fair, I don’t consider myself as ‘disabled’, although that may change when my CKD gets to end stage.

Anyway here it is:  

Forgive my words if they are terse

It's not the end, it could be worse

They try their best, I'm sure it's true

But it's all my kidneys they can do!

They were never right from the start

Now I fear they'll break my heart

And when their time is finally come

I’ll beg a donor for another one

No point in asking ‘Why’?

Will only send my BP high

No more gout I hope and pray

It can only spoil my day

So a rather sorry little tale

I'll horde the days until they fail

Till then I mustn’t worry

For dialysis I’m in no hurry

More BMI Batshit and ‘Healthier You’

The BBC carried another story yesterday about the misuse of Body Mass Index by NHS Care Commissioning Groups (CCG) to ration medical treatment. It pretty much repeats the points I’ve made previously about this being very far from sound medical practice and more importantly how it is self-defeating. People who could benefit massively from treatment languish in a catch-22 situtaion whereby they cannot receive it because their BMI is too high, but getting BMI down is handicapped due to deprivation of treatment, the whole situation being determined by politics rather than medical science.

For my own sins I weighed in at 114kg today, up 1kg on last week, this is pretty much down to a little overindulgence over Christmas, and taking less exercise over the last few days for the same reason. I’ve tried to be sensible, it’s been far from a binge, but there are so many casual calories floating around this time of year, and when I don’t have to get out for work there’s less natural opportunity to exercise (the weather has been filthy).

113kg is pretty much where I’ve been for most of the last year, so I expect that’ll be where I am when I weigh in at the hospital in just under a fortnight. I’m approaching this one with mixed feelings, I really want to know if my numbers have stabilised or if I’ve dipped again. I might get a bit of grief over the lack of progress with my weight loss, but that no longer worries me so much, especially as there has been a recent positive development.

My GP is referring me to something called ‘Healthier You’ which is the tagline of the National Diabetes Prevention Programme (NDPP). This aims to help people, like myself, who are at higher risk of diabetes, by developing diet and exercise changes. This intervention saves money for the NHS by following the ‘prevention rather than cure’ mantra, and could obviously have personal benefit to me. I don’t see I have anything to lose, the worst case scenario is it tells me nothing I  don’t already know, but the ideal scenario is it unlocks profound new practical insights or 'life hacks' I can use to restart weight loss.