Tuesday, 7 August 2018

A belated update - Summer 2018

I've been too busy with work, family life and other projects to do any blogging recently. I had my Nephrologist appointment in early June and my stats were largely unchanged, the consultant believes they look a little better when I lose weight and a little worse when I gain it.
At 115kg I was slightly heavier than the previous appointment, which was no surprise. My recent weight seems to have settled around the 115kg mark, which is one or two kilos above where it has been for most of the past two years. It's a little disappointing in that I did get down to around 112kg 18 months ago, so I know it's possible to get there.
My potassium levels were largely unchanged despite some efforts I made to reduce potential intake; suggesting it's one of those things that’s hard to shift the dial on. She did suggest increasing my sodium bicarbonate from 0.5g in the evening to 1g (I already take 1g in the morning), which cleared up the reason I take it in the first place. Sodium bicarbonate apparently helps flush potassium out of the kidneys, it also counteracts acidosis, where the kidneys fail to excrete acids (excess uric acid is the cause of dreaded gout). The flip side is that sodium bicarbonate is linked to higher blood pressure, resulting in a balancing act.
As it happens she never passed on these instructions to my GP, so my script is yet to change. My potassium levels are the probable culprit for the leg and calf cramps I suffer daily, particularly when in bed. I've trained myself to recognise warning signs and possible triggers such as the natural urge to stretch too quickly when waking in a morning, and to react fast when cramps do occur e.g. jumping out of bed and immediately stretching the relevant limb results in a short sharp pain, whereas letting it recede naturally takes longer and leaves residual soreness that can last all day.
The week following week the Nephrologist I had my annual medical at the GP surgery. My cholesterol levels have got worse, but this is more down to my 'good' HDL cholesterol being low relative to my 'bad' LDL cholesterol, rather than the LDL shooting up. Of more concern my HbA1c level had increased, putting me back in 'prediabetic' range again. Two years ago I was in this range, then I lost some weight and dropped out of it, now my weight has gone up a bit I'm back in it again (I'm still 10kg lighter than first time round). To shine a bit of perspective on this prediabetic reading, my HbA1c has gone from 5.9% to 6.0% which, that 0.1% putting me back in range. I got out of it before, I'll do it again.
These prediabetes readings also explain what happened with my referral to the 'Healthier You' diabetes prevention programme. This NHS programme is intended to intervene early with high risk patients, the premise being that prevention is better (and definitely much cheaper) than cure. My GP referred me late last year on the basis of my medical history including my weight management issues, my chronic kidney disease and my previous prediabetes reading, but because my then most recent HbA1c test just dropped me out of range I was rejected! Time permitting I'll write a more comprehensive post on this subject, but it’s a good demonstration of arbitrary rules being applied to clinical decision making, in this case a 0.1% variance in HbA1c led to an eight month delay in getting me on a programme that offers significant benefits to my health and the cost of my future treatment!

Tuesday, 19 June 2018

Hip, hip, hooray for Govia Thameslink Failways

This week started well; for the past two days my morning train has actually gone to where it was supposed to and the afternoon one has only been a few minutes delayed. Last week Govia Thameslink Railway (GTR) only managed to complete the morning train once in four attempts (I worked from home on the Monday so it got a wildcard that day).
Last Tuesday morning I was thrown off at East Croydon when the rostered driver remembered he wasn't trained to stop at the next station (London Bridge) and the service had to be diverted, on Wednesday it was cancelled completely, and on Thursday the driver again wasn't trained to complete the route. On that occasion passengers were told to get on the next service only to be thrown off that too because the next driver wasn't trained to complete the roster either. According to station staff they genuinely don’t know if a driver will be able to complete the trip till it’s on route, and the drivers themselves don’t seem keen to announce their lack of capability till they have no other option. As London Bridge is the most popular station on this route (and my stop) the result is a mass detraining with hundreds desperately scrambling across platforms for the next dangerously overcrowded train.  
Since the botched implementation of the Rail2020 timetable last month GTR ‘services’ have declined from unreliably shite to shambolically unreliably shite. Long-standing failings having been exacerbated by changes it simply wasn't capable of implementing. Absolutely nobody was surprised by the failure, especially not GTR which appear to have ignored all evidence as well as its own track record.
The abysmal performance of GTR and its puppet master the Department of Transport over the past few years has been documented by journalist David Boyle; he’s debunked much of the false narrative seeking to lay the blame on belligerent trade unions and staff sickies. It’s clear the DfT hired GTR as a hatchet man to hollow out the services in the name of cost cutting. The arrangement designed specifically to give the DfT plausible deniability about the disaster this experiment created whilst also creating a moral hazard whereby GTR still get paid whilst running the operation into the ground.
GTR doesn't employ enough drivers to deliver all its scheduled services, it hasn’t since it took over the former franchises it operates (it has a management contract not a franchise). It doesn’t appear to have done much to recruit and train drivers to plug this structural understaffing; that would incur costs and as it gets paid regardless there is no incentive. Instead GTR relies on massive use of overtime to maintain 'normal' service, which means absolutely no resilience in the system. Sustainable operations run at 80% of capacity in normal times, the other 20% being contingency to handle shocks. Organisations that run at close to 100% all the time are not sustainable because no organisation has perfect operating conditions all the time.
Much has been made of Network Rail's delay in signing-off the new magnum opus timetable. There is some truth in this, but it's an excuse stretched too far. The new routes are materially the same as those consulted on two years ago, GTR should have begun training drivers on the changes earlier and adjusted for any small changes after sign-off. But GTR doesn't have enough drivers, so it doesn't want to take them out of service for training and the DfT didn’t want to delay the new timetable even after a clusterfuck became inevitable.
So now we have ‘short notice service alterations’ where services mysteriously vanish only minutes before their scheduled departure time, where drivers get rostered on to routes they’re not able to complete and where you simply cannot trust any information provided through official channels.   
Charles Horton, the CEO of GTR fell on his sword last week, even the DfT's favourite puppet realised the sheer level of shiteness had moved beyond parody. Transport Minister Chris 'Failing' Grayling hangs on by the skin of his teeth, narrowly surviving a vote of no confidence today, the grim conclusion of the disintegrating Conservative Party being that it doesn’t have anyone to replace him. But ‘Failing’ say it’s okay, he’s sure it’s not his fault and just as soon as he works out why the industry he has been in charge of for the last two years has collapsed he’s going to start doing something about it!

Thursday, 14 June 2018

Kidney Research UK makes me sad

Last July I enjoyed Kidney Research UK’s London Bridges walk; a seven-mile hike up and down the Central London section of the Thames raising important funds for kidney disease. It was a fun, family friendly event I was looking forward to doing again, so I was pleased to get a reminder email given the communications last year were decidedly hit and miss. But, having read this year’s terms and conditions I’ve reluctantly decided not to bother. 

Last year it was £10 to register and from memory there was a suggested sponsorship target of £60. £10 seemed a bargain considering it included a t-shirt so I made an additional contribution, and I covered the suggested sponsorship with donations from family and friends as well as out of my own pocket. But the important thing was that I didn’t feel under pressure to hit a target, I simply donated money as I received it. 

This year things have changed. When I followed up the email I found registration has increased to £15, which I thought was reasonable. However, there was now a £100 minimum sponsorship target with some rather wretched boilerplate text to the effect that people who cannot commit to it aren’t welcome. Since the original email I’ve checked back and the wording has been tweaked a few times, for example ‘minimum sponsorship’ was rebranded ‘suggested sponsorship’ and the FAQ have been modified but the boilerplate still essentially tells people who cannot commit £100 sponsorship to jog on. 

I know it’s in a good cause, that’s why I’ve previously supported it, and I could also cover the minimum sponsorship from my own pocket without hardship, which is possibly why I am so torn over this (if I couldn’t there wouldn’t be any debate), but I’m an analyst by disposition as well as occupation and the reasoning for this rather wretched policy just doesn’t stack up and that leaves a bad smell I just cannot ignore. I can afford to entertain this, but there are probably people out there who will be excluded even though they could make a positive contribution if they weren’t.

The original boilerplate (since amended) appeared to be copied over from other fund-raising events without sufficient copy editing to make it specific; for example it discusses the need to cover the costs of major events organised by other organisations such as the London Marathon, where places are highly coveted and very expensive (a charity place for the London Marathon costs hundreds of pounds). But this event is organised by Kidney Research UK and whilst costs need to be covered by participants they’re not on the scale of a marathon which requires road closures, policing, and significant support infrastructure from public sector bodies. 

More recent boilerplate covers the more realistic costs incurred by this event such as stewards, tents, snacks etc. This is perfectly reasonable, but after some cursory research into equivalent events I conclude that costs are probably covered by the £15 registration fee, with sponsorship being the contribution to the charity’s actual mission. For comparison Diabetes UK are running an almost identical event in September with a £5 registration fee and no minimum sponsorship, it suggests a sponsorship target of £120 which I have no problem with, but crucially it stresses its walk as a family event and doesn’t get heavy about minimums. 

The relationship between the actual cost of the event and the registration fee also explains the incongruous decision to allow late entrants to sign-up on the day for £25. Unless such entrants are only allowed to join with a pre-registered participant it’s unlikely they’ll have set up a sponsorship programme beforehand. If I’m right, the marginal revenue of £25 from a late sign-up more than covers the marginal cost of accommodating them, especially as by that point the costs are mostly sunk. 

I don’t have all the numbers, but my conclusion is that by being heavy handed about minimum sponsorship Kidney Research UK is estimating that participation numbers are relatively inelastic when it comes to sweating fund raisers for contributions. After all is said and done most of them will have experience of kidney disease, whether personally or through friends and family, and will shrug off the unpleasantness implicit in such calculations. For me though it’s too much of a spoiler. I’m still going to make a donation to Kidney Research UK, as I think the work is too important not to, but it won’t be as much as had it not been so grubby.

Wednesday, 16 May 2018

16:8 Washout

The 16:8 turned out to be a washout. I did it for a couple of weeks and saw no material improvement. I’ve decided to try and mix my regular diet up a bit instead. I’m aiming to replace my main evening meal with a bowl of soup a couple of evenings a week, and also switch out lunchtime sandwiches with a baked potato some days. Hopefully this will reduce down my refined carb intake a little. One thing I do need to get a handle on is grazing on sweets before dinner. I’m not bingeing, but the house is awash with sweets and chocolate which puts me wide open to temptation when I get home feeling hungry but with dinner usually an hour away at least.
I’ve also started walking to the station again in the morning, at least when weather and schedule permits. It adds at least another two thousand steps on to my daily count, and it comes before breakfast which in theory is good for digestion. Too early to tell if these moves will be successful, but I’ve less than three weeks to my next trip to the Nephrologist and I really want to get my weight down to at least 114kg by then.

Friday, 4 May 2018

Appointment shuffling and intermittent fasting

I should have seen the Consultant Nephrologist last week, unfortunately the appointment was cancelled, even more unfortunately I'd already had the pre-consult blood test. This means when I do get to see her in early June the results will be over a month old.

Outpatients tried to reschedule for the second half of May bu I rejected the proffered slot as it was late-morning. I always aim for early morning as the later the appointment the more delayed the clinic. Late morning is at least a thirty minute delay, by the afternoon it's over an hour. I'm not sure if it's too many appointments booked, not enough time per consultation, or maybe both? My consultations typically last five minutes; enough time to review stats, discuss symptoms and adjust medication if required. Some patients take much longer, possibly because their CKD is more advanced or they have complex needs. I arrive (on time), see the nurse for weigh-in and blood pressure, then I wait to see the Consultant.

It's probably a good thing the appointment was deferred, in the last few weeks my weight has ballooned to 116kg, my heaviest since the summer. I'm not entirely sure why, it's not down to bingeing, I suspect a combination of changes to my daily commute and mild indiscipline. Since I changed jobs earlier this year it's not practical to walk from the terminus to the office; I've maintained my lunchtime constitutional but it's not the same as the brisk morning walk I had before. Later this month Southern Fail are overhauling the timetable, which along with more clement weather, means I may be able to start walking between home and the nearest train station again. I enjoyed doing this last year when the weather was agreeable and my overall commute was easier.

I've also started experimenting with 16:8 intermittent fasting, which basically entails eating my normal diet but skipping breakfast on weekdays. The idea is to fast for sixteen hours then consume the calories for the day in an eight hour window. I fast from 8pm to noon the following day, but it's a matter of personal convenience, and this regime fits my working day well. The 16:8 fast is supposed to help the body into a ketosis fat burning state. I've been doing it just under two weeks and the results on the scales are inconclusive, though I feel less bloated. There potential downside is that my normal diet still has plenty of carbs in it, I've only excluded the ones I regularly consume at weekday breakfast. If there isn't a material weight loss after two weeks I'm considering further adjustments towards a 'keto diet'. A friend has utilised this successfully over the last couple of years, but he's single and doesn’t have kids, which makes meal planning simpler.  

A different form of intermittent fasting was the proposed diet strategy for the 'Constant Craver' group identified by a BBC backed weight loss study a few years ago. I did a self-assessment at the time and fell into the 'Constant Craver' category. This particular version of intermittent fasting was based around eating regularly five days but reducing to eight hundred calories on two days. That's unlikely to work for me (although I'm not entirely ruling it out), currently there's just a coupleof hours each morning when I feel hungry, the rest of the time I'm satiated.

As well as rescheduling the Nephrologist I've had fun rejigging other appointments. Last year the Consultant decided I should have a course of Hep B vaccinations to future proof my kidneys from potential infection, that means four jabs each a month apart with the third due next week. I've also been invited to my annual medical at the GP surgery (along with pre-review blood test). As usual it needed rescheduling (invites made by the surgery without my involvement strangely take no account of whether I can actually attend). It could have been worse the letter originally went missing before I even saw it, it was only when my wife asked about what was in it that I called and found out. It did eventually turn up, unopened, behind the sideboard in the dining room, but there was a very real risk I would simply have not turned up to the appointment. Ultimately it's all worked out, I've managed to reschedule the pre-medical blood test for the same day as the Consultant appointment and the medical itself to coincide with the final Hep B jab. It's a bit of a faff, but better in the long-run! 

Thursday, 29 March 2018

Presumed Consent

Recent movements on presumed consent have spurred me to action on this long-planned post. There’s a lot of waffle about the private members bill that recently passed its second reading being a historic event, it’s not, it’s symbolic rather than a practical step change.  
Few private members bills become law, this one is stronger than most in that it has cross-party support and is welcomed by the Prime Minister and the much-maligned Health Secretary, but there are still powerful religious lobbies who oppose its passage.
All this will actually do is bring England into line with Wales, by adopting a soft-opt out system that has yet to demonstrate a major uplift in donations from the deceased. One problem is that a key blocker for recovering organs remains in place; the donor’s next of kin can still overrule the presumption of consent, in fact this can happen now even where a donor has explicitly given their consent.
I’ve seen arguments that increasing life spans are part of the problem, that as people die at an older age there are less healthy organs available. I’m not entirely convinced. Because a donor was old donor doesn’t mean the organ isn’t viable, in some cases it will be true, but it depends on the donor and the organ. Kidneys tend to lose function naturally over time, but some organs like the liver are remarkably resilient. Besides a kidney that gives ten years free of dialysis is better than nothing, especially as medical science moves forward to longer term solutions.
A more fundamental problem this bill will not address is the required investment in the transplant system needed to drive up utilisation of donated organs. The Spanish system is considered a golden standard in this respect; time, money and energy have been spent on the systems and processes needed to drive up donation rates.
One intriguing argument is to allow people to sell their organs, though there’s an undoubted taboo about this which causes an instinctive recoil in some people. No doubt it goes on around the world, where it is associated with economic coercion and the exploitation of the poorest and most vulnerable. But there remains a utilitarian case around its efficacy in saving lives, the economic rationale is sound, and the ethics of free will are a counterbalance to allegations of exploitation. Still, breaking through such strong moral objections is a challenge.
My own personal views on presumed consent are conflicted. Once upon a time I believed it to be an oxymoron, accept this and you could presume consent for anything you like regardless of whether you were likely to get it or not. There’s a whole slippery slope of consequentialism for brighter thinkers than me to mull over. These days I’m not so sure.
I don’t like special pleading and given I’m likely to need a transplant in the next ten years or so, I could very quickly descend to that. So, I need a good argument.
There are obvious benefits of taking organs from dead people who don’t need them anymore and giving them to sick people who do need them, but expropriating stuff from people because they don’t need it isn’t usually associated with responsible authority. There is a crucial distinction, the organs have no intrinsic value to anyone other than the suitable candidate for transplant.
Whilst watching the first series of The Frankenstein Chronicles I was struck by an argument used by a Resurrection Man, you cannot steal a dead person’s body from them. This makes sense, they don’t own it any longer and it’s not part of an estate to be passed to an heir in the manner of a house or jewellery. You don’t keep Granddad’s vital organs on the mantelpiece. I’m sure some people will disagree with this, but outside of a few Indonesian communities I’m pretty sure they won’t keep the decomposing body around for very long.

Firing Blanks

After all my guff about posting more often this year I’ve reverted to form. Once work is done and family responsibilities are taken care of I just can’t be arsed to write. It’s not that there aren’t things I don’t want to put down, it’s just that I’d rather watch a tv show, read a book or listen to a podcast.
Anyway, I got the results back from my latest andrology test last month and I am finally shooting blanks. So pretty much twelve months after my vasectomy I am finally infertile. Does it feel any different? No. 
As far as my CKD goes there's not much to report. My weight has crept up to between 114 and 115 kg, it's hardly ballooning, but not heading in the right direction. This morning I had the second course of four hep B vaccinations that my Nephrologist recommended, the first course just over a month ago left my slightly groggy, but nothing today. I'm still waiting to hear back from the healthier living referral the GP was supposedly making back in December.