Hiatus Over

After a near three year hiatus I’ve decided to start blogging again. A lot’s happened between then and now, and some of those gaps I’ll try to fill in future posts. There was never a formal decision to stop blogging, it was just time constraints as I put my life back together post divorce (I’ve hidden away some of the posts dealing with this period as nothing good will come from raking over them).

This blog was originally intended to document my journey with Chronic Kidney Disease, so that seems a good place to start. I’ve now reached end stage and I’m working with the renal replacement team on what comes next. Next month I will be meeting the surgeon to discuss having a fistula created to facilitate dialysis, but I’ll elaborate on this in a future post. From a health perspective I’m generally well, or as well as can be expected given my prognosis. Fitness wise things are not quite so great, having managed to get down to 100kg, my weight has crept back up to 110kg over the last couple of years. I still try to keep active, but it’s a challenge balancing everything. I’m determined to get things back on track over the next few months.

From a personal relationship perspective things are good. I’ve been with my partner over three years now, we’ve just come back from a fantastic weekend away in Somerset where we were looked at engagement rings. Our relationship isn’t without its challenges, we both have lots of commitments, busy careers, our own health issues etc, but what’s great is that we really value the time we spend together, whether it’s trips to interesting places (Canterbury, East Anglia, Istanbul, Valencia, Wells etc), visiting our respective families or just chilled weekends doing dog walks and trying out recipes.

My relationship with my son remains strong, there have been some ups and downs, but he’s doing good. He’s changed schools this academic year which has recently boosted his engagement (the old school had a big reputation it sadly failed to live up to) and after a couple of years away he returned to his old rugby club last season and is really getting back into it. The situation with my daughter has been a bit more bumpy, we’ve gone through phases where our relationship gets better only for it to take a set back, but I remain immensely proud of her, despite her own challenges which disrupted her studies she did really well in her GCSEs, she’s now at college, has a steady boyfriend and is working part time.

Professionally things are solid, my position as a development team lead was made permanent and there’s a good team dynamic going on. I’ve got some pretty demanding projects in-flight which brings a certain level of stress, but they’re growing me as a leader as well as developing my technical skills. 

Outside of work I don’t get as much time as I’d like for extra-curricular activities; I did write, record and release the first episode of an audio drama on Youtube a couple of years ago, but the second episode has been pending ever since. More recently I purchased an action camera so I can record some of the cool places my partner and I visit, so I’m going to try my hand editing and uploading some of that footage in the near future. I’ve no desire to be a professional ‘content creator’, I already have a busy career, but I do like the idea of sharing the stories and places I find interesting.

At the time of my last post I’d recently moved into my new flat and renovations were underway, barring a few snags they are pretty much all done now. I’ve almost entirely renovated the place and I’ve done a lot of the work myself, with some help from my partner and my parents. It’s been tough but learning new or enhanced DIY skills has been really rewarding; not forgetting that being ‘handy’ has saved me a lot of money I can put to other things. 

 

Anyway, I think that’s enough for today.

Another Belated Update

 It’s self-evident I’ve been pretty shit lately at updating this blog; as always I’ve simply been too busy with day to day life. It really is s a good job I decided not to set formal goals this year as tracking them wouldn’t have been disheartening. Having said all that, I haven’t drifted that far off course.

My writing/podcasting ambitions are pretty much permanently parked for now, I said in January this year could be make or break, and it’s increasingly looking like the latter. Although, perhaps I shouldn’t box myself in to a corner?

On the fitness side things aren’t too bad; I recently managed to upgrade my weight plates (having been out of stock for over a year), so I’m taking steps to increase progressive overload in my training sessions. I’m still running fairly regularly, aiming for two 5k runs per week, although some weeks it ‘s only one. I used to have a target of three 5k runs per week but time constraints and my dodgy knee mean that’s simply unsustainable. My 5k timings can be a bit erratic, and it’s been over six months since I managed to go longer than 5k, but the average is fairly stable and earlier this month I came in under 35 minutes for the first time. Also, having acquired a Labrador puppy in the autumn I’ve been spending at least an hour every day being taken for a walk by him.

My weight has fluctuated recently, topping out at 109kg, although mostly in the 107kg - 108kg range (last Wednesday’s weigh in it was 107kg exactly). I know that the way to get it under control is to tighten up on the time restricted eating/intermittent fasting. At the moment I’ve been fairly relaxed on this, I’ve been eating breakfast most days whilst swapping a proper evening meal for a light snack like toast or soup two or three times a week. From July I’ll probably be back to the office a couple of times a week, in which case it will be easier to revert to a more severe calorie restriction on those days (working from home makes snacking/grazing easier, in the office I can avoid food more easily).

Also on the bright side, I’ve now had both my Covid vaccinations, and the second jab went fine, so no waking in the night shaking like a rag doll. With lockdown easing I’m also looking forward to a few short away breaks we have booked in June; it’s nice to have stuff to look forward and I could do with recharging my batteries.

More Medical Moaning

As I predicted back in January, Covid-19 has once again disrupted my treatment, albeit this time it appears it was the hospital communication processes that were been struck down. In late February I received a letter cancelling the March in-patient appointment, which had already been pushed back from early February. The day I received the cancellation letter I received another one dated the same day scheduling a telephone consultation at the precise date and time of the cancelled in-patient appointment. Presumably the appointment system couldn’t cope with simply sending one letter converting an appointment from in-patient to a telephone consultation?

When consultation day arrived I made sure to clear my work diary around the scheduled time, and sat patiently with both landline and mobile at hand, I didn’t even dare pop to the loo for fear of missing it. I waited and waited, but alas, no phone call ever came, nor were there any missed calls or voicemails.  The next day I called the appointments line and was eventually able to leave a message with the Nephrology department. The day after that I received a call back to inform me that the doctor had attempted to call me, but had been unable to get through. They confirmed both my mobile and landline number were correct on the system, and I know for a fact that both were in working order on the day itself, yet for some reason neither were reachable at the time of the consultation.

Of course, it is possible that by some strange coincidence, both my landline and mobile were disconnected from their respective networks at just as the doctor called, only to be reconnected shortly after. I think it’s more likely that the doctor simply tried a wrong number and then moved on when it didn’t work, which is why there were no missed calls and no messages. Occam’s Razor and all that!

Instead, I got a copy of the letter to my GP advising my condition is stable, that the Alfacalcidol medication should be doubled and that as my platelet count has been chronically low since 2013 it will be referred to Haematology for assessment. A low platelet count does explain a few things, but none of them are particularly worrisome, which I suspect is why it’s taken eight years for it to be picked up. Of slightly more concern is that the target range for blood pressure is lower than what I’m typically achieving on my home readings.     

It will be interesting to see if anything at all comes off the back of this letter, I’m inclined to think not.

Got My First Covid Jab

There aren't too many benefits of having CKD; but I found one last Thursday when I was invited to book my Covid-19 vaccination. Falling into the clinically vulnerable category meant my wife and I (she was diagnosed with diabetes a couple of years ago, but has largely reversed it) were bumped up the pecking order.

So, midday Friday we went to a local community centre and got the AstraZeneca jab together. Aside from being told to wait fifteen minutes before driving home it was a pretty quick and painless affair. We were clearly warned about the possible side effects, my wife did take some paracetamol as a precautionary measure, but since my CKD diagnosis I've generally avoided painkillers whenever possible. Not that I felt the need to take any, as I was perfectly fine from the moment I had the jab to the moment I went to bed shortly before 11 o'clock.

That lasted until just after midnight when I woke up with a stiff neck, a raging headache and a rapidly descending fever. Placing my hand on my arm I could feel the heat coming off my skin, and my pyjamas were damp with sweat, yet at the same time I was shivering constantly as my brain insisted I was cold. Going to the toilet was a major effort, searching the medical cabinet the dark for paracetamol was completely out of the question. I lay there for a couple of hours, convulsed by violent shakes, like a hideously oversized rag doll being pummelled by an unseen force.

Eventually my wife woke for the toilet around 2 o'clock, I don't know whether my exertions disturbed her, but she found me some paracetamol and eventually I got off to sleep. Waking in the night for the toilet has a tendency to disturb the dog downstairs, he listens for stirrings of life from the household and howls for attention if he detects it, but this night there was no way I was going down to soothe him. 

The next morning I felt better, not great, but better. I was stiff, like I'd done some serious exercise, which I suppose was the several hours of being shaken like a rag doll. My plan to run Saturday morning got knocked on the head, and for most of the day I felt a little out of sorts, becoming increasingly run down as the day went one. But with a half decent night's sleep I was well enough to put in a reasonable 5k on Sunday morning. Since then, I've had a little bit of the sniffles, which might be residual ‘flu like’ symptoms, but overall, it's a small price to pay for a path out of the plague. 

Medical Moaning

 I thought it was about time I wrote an update on my medical situation, a long overdue follow up to Corona Confusion Redux back in June 2020. To recap: my scheduled May Nephrology Clinic appointment was skipped from the list on the day (it was supposed to be a telephone call, and before that a video call), and I'd been given a new appointment for November. I received a letter from the clinic saying things were okay based on the May tests, without any specific details of what that meant. My GP increased my blood pressure medication after I raised some concerns with him, and I subsequently received a blood test form for the November appointment which was missing half the regular tests. So, there were lot of unanswered questions.

In July my scheduled November appointment was cancelled, to be rescheduled for some indeterminate point in the future. This worried me as it meant over a year would pass without access to a Consultant Neprhologist. I realised I shouldn't moan too much, Covid-19 has put others in a far worse situation in regards management of chronic conditions, but part of the reason I'm in this situation is because a series of warning signs were overlooked during my twenties and thirties. At my last appointment I was told I might get between three and five years before I need a transplant, but any serious illness would radically reduce that timeline. I'm lucky that the programme I've followed over the last ten years has radically slowed the decline in kidney function, but I'm close to a tipping point where one serious bout of illness may be enough to bring on end stage.

Fast forward to October and I had my annual medical review with the GP, it was a few months later than normal, and done as a blood test and telephone consultation with a nurse, but it was better than nothing. Generally speaking, all was fine, or at least what passes for fine in someone with my condition, cholesterol had improved and my weight loss means I've even fallen back out of the pre-diabetic range again. I mentioned my concerns around the kidney appointments, which prompted a call from the GP to reassure me there was no immediate danger and as long as I wasn't being discharged I shouldn't worry. He did suggest that the recent bloods might trigger some activity from the Nephrology clinic, but if I didn't hear anything by the New Year he'd write a letter.

Sure enough in early November I got a call from the Nephrology clinic informing me they'd sent a telephone appointment for the end of the month, but they were going to bring it forward to the 10th as a slot had opened up and I had recent bloods. So, almost a year after my last appointment I got to speak to a consultant. In summary there has been a small dip in my function, nothing major, and within the range of previous fluctuations, but enough to put me back on a three-month appointment cycle. Well, that was the plan, as is the way of the ‘new normal’ that appointment has since been pushed back a month to March, I wouldn’t bet against it being moved back again.

I recognise Covid-19 has turned the world upside down, and I’m really lucky that I’m not end stage right now. On the other hand, I’m acutely aware I have no safety buffer anymore, it’s been made clear to me that one serious bout of illness could be enough to push me into end stage. It’s possible I’ve already had the virus, my daughter tested positive before Christmas, albeit she was largely asymptomatic (a day or two of headaches and a lost of taste/smell). My wife, my son and myself all tested negative, but I did subsequently experience a few days of feeling run down which I wrote off as overwork. I’ve made peace with the fact I will end up on dialysis before this decade is out, but I’m not in any hurry to get to that point.

Corona Confusion Redux

A while back I wrote about the confusion surrounding my May nephrology appointment, unfortunately things didn’t get much clearer.

Getting my bloods done was straightforward; I called the GP surgery on the morning and an hour later it was done. I suspect the surgery has been pretty quiet during the pandemic (I’ve heard similar about other local surgeries). Vetting patients by phone before granting appointments, plus the advice to stay away unless you really need help, seems to have dissuaded malingerers (my Mum spent decades working in social care and believed many GP appointments were simply attention seeking).

Previously I wrote how I’d emailed the hospital to clarify if my scheduled video clinic appointment was going ahead as a letter I received referred to an in-patient appointment instead. Sadly, nobody bothered to respond to that enquiry; I should have known better than to email the NHS. However, I did receive a phone call from the Nephrology Department a week before the appointment warning I might get skipped from the list; basically, I may (or may not) receive a telephone call at the allotted time. My results would be reviewed and I might be called and if I wasn’t I’d get a letter in due course. As for the video clinic, no mention.

In advance of the appointment I took my usual home blood pressure readings and found they’d moved in to the high category over the last couple of months, I made a note to discuss with the consultant if they called.

The time of the appointment came and went, there was no phone call, then just before lunch someone from the video clinic called and asked why I hadn’t joined? Was it because I didn’t have a suitable device? I pointed out the joining instructions had never arrived, and besides it was now supposed to be a call (although by that point I obviously wasn’t getting one). They were apologetic about for confusion. I mentioned my blood pressure concerns but told them I’d speak to my GP.

So, I called the GP surgery about my blood pressure and a short while later the GP called me back, I explained how I’d been passed over and he increased my blood pressure medication with the intention of reviewing about a month down the line. Sorted.

Later in the afternoon I got a call from the Nephrology Department, apparently the video clinic had passed on my blood pressure concerns. They said someone should have called me the week before to warn I might be skipped, I said ‘they did’ and explained it had been the video clinic that had called me asking me why I’d not attended. Another apology for confusion was offered. It became clear the video clinic and the Nephrology Department had no idea what each other were doing. The video clinic is being run out of East Surrey Hospital where I usually have my appointments, but all Nephrology clinics are currently over the phone from St. Helier Hospital.  I explained my GP was dealing with the blood pressure and I would await the consultant’s letter.

A couple of weeks went by and no letter, but a new appointment for November arrived without a blood test form. This made me nervous, I’d gone from appointments every three to four months, to a whole year elapsing without seeing a nephrologist. I waited another week and called the appointments line to find out what was happening. I was assured a letter was due to be sent out and they’d raise a query about the blood test. 

As fate had it the letter arrived later that day, and there was a blood test form with it. I now know my kidney function is stable, hence the six-month follow up, but there was no mention of the test I had to confirm last year’s Hep-B vaccinations course was successful. This is a bit annoying as this test has been repeatedly missed off. Unfortunately, the blood test form was also missing half my usual tests, so that will need resolving before November. All in all, it’s been pretty frustrating! 

Corona Confusion

Long-time no blog. Despite being in lockdown for three weeks I still don’t seem to have time for my writing. The demands of home schooling the kids whilst both my wife and I work from home has eaten away some of the time gains from losing the commute and pausing the usual treadmill of domestic activities. I’ll write a proper update on my goals later this week, this post is about how the Covid-19 pandemic has affected my CKD treatment. 

To date, thankfully, it’s been a case of potential rather than actual disruption, but I am a little nervous. I managed to get a repeat on my prescription for another two months, despite the review date passing in January, so I’m good there. However, there is some confusion around the renal clinic appointment I’m due in early May, and a little uncertainty over the pre-clinic tests.

After my last appointment, the nephrologist suggested I might like to join a video clinic trial. My CKD is on a managed decline, and staying free of serious illness, I might have five or six years before I need transplant of dialysis. Of course, there’s a very big IF in that scenario, especially now we’ve got a dangerous pandemic raging across the globe. So, the new strategy was to alternate video clinic appointments with out-patient appointments at the hospital, and if there were any hits to the function I’d be back on more frequent in-patient clinics. 

This sounded good, I could simply pop into one of the privacy booths at work and do the consultation on a tablet, rather than taking time off work or going into the office late and fighting for a desk.

A few months back the instructions for joining the video clinic arrived and we were all set. Then when everything kicked off I wondered if it might be cancelled, till a couple of weeks ago I got a letter saying it was still going ahead. Good news. But, (why does there always have to be a But?) the letter stated that I was going to receive a telephone consultation instead of the planned in-patient appointment at the hospital. This has obviously made me a little nervous as there never was a planned in-patient appointment, as the letter suggested I emailed the appointments people about a week ago to find out if it was the video clinic is going ahead as planned, or is it that appointment that has been switched to a telephone call. I haven’t yet received a response.

On the tests front things are also switched up, although this could be to my advantage. My GP surgery used to do blood tests on Tuesday and Thursday mornings, the samples being sent off to the hospital lab before lunch. As I usually work from home on Wednesday’s those slots were typically no good for me. So, a week or so before my appointment I’d drive to the hospital after the school run and wait for a drop in blood and urine test. Now I’m home permanently I thought I’d book a blood test at the surgery instead; only to find it is no longer booking appointments for anything. Instead I spoke to one of the GP’s last week and she told me I should ring up first thing on the day I want it and they’ll give me a slot. As there’s no longer any appointments tests are being done every morning, the only challenge is getting a place in the queue early enough to get it done before the samples have to be despatched to the lab. To hedge matters I’ll start trying for an appointment about a week earlier than normal, giving me a few shots at getting it done before I have to fall back on a hospital drop-in.

Healthier You Update

Been a bit too busy for blogging lately, but I did get a positive response from East Surrey Clinical Commissioning Group about my complaint. I received a call from the diabetes prevention programme manager who apologised for the way my referral was handled, he admitted there had been ‘resource issues with the provider’ (although he didn’t name Ingeus by name) and that I wasn’t the only working person who’d had difficulties. Apparently, there is a new provider coming in shortly to provide a more flexible service including an online programme for those who cannot get to appointments during the day. He’s going to put my name forward as one of the first to be referred to this, so I await further news.

Ingeus and Healthier You: a total shower of shit

In my last few posts I’ve mentioned all is not well with my referral to ‘Healthier You’ the not so early intervention diabetes programme. I’ve written before about the shambolic performance from Ingeus, the outsourced provider delivering the programme in my area, but having given it the benefit of the doubt several times I found thing only ever got worse.

A short summary of events: in late 2017 my GP referred me to this programme, he thought it would be helpful given my health issues and weight management difficulties. I didn’t hear anything for several months, I mentioned this to the practice nurse during a routine appointment, she did a little digging and uncovered I’d been rejected. But Ingeus hadn’t bothered to inform me, and nobody at the surgery had picked up on it. So, she helpfully got the referral raised again, a month or so later I got the letter inviting me to join and a few weeks later a phone call to arrange times.

According to the bumf, the programme would be delivered as group sessions around two hours long, starting with four weeks of weekly sessions and then nine months of monthly sessions. Sounded like a clinically charged-up version of Weight Watchers. The first advisor offered me sessions on a Tuesday afternoon, but I had to decline as they were nowhere near work and taking thirteen half days off was a bit of a stretch. But it was okay, they would find me an evening session, after all there will be loads of people like me who work during the day, people who could benefit from early intervention but find appointments during the day a challenge.

About eight months goes by without word, then I get a second call offering me a later afternoon slot, a little bit further away. I decline again, tell the advisor I’m waiting for an evening slot, they tell me they class late afternoon as an evening slot. I tell them it’s still not helpful as I need an actual evening slot, they confirm they can see this from my previous contact. I’m told they’ll have another go at finding me a genuine evening slot and someone will get back to me in a few weeks. 

Two months later a third advisor calls and admits that evening slots don’t exist and they think it’s best if I’m discharged from the programme so my GP can try to find something more appropriate. We have a slightly awkward conversation where he tactfully acknowledges the programme isn’t designed to support people who work during the day, without presenting this as a bit of a fuck up.

A few weeks after that I get a gratuitously inappropriate letter from Ingeus, packed with glib platitudes about how serious diabetes is, and expressing how sorry it is I’ve decided to leave the programme. What the fuck! 

Now, maybe the warning signs were always there, the failure to communicate the initial rejection, the extended wait for the non-existent evening slots being pretty clear indicators. But, perhaps the biggest warning sign was in the promotional bumf, the brochure is plastered with a diverse range of stock photos, but go to the patient case studies on the website and they are overwhelmingly older people, the type who are likely to be retired or semi-retired, not so much in the way of people who work full time and have young families to juggle.

I decided to complain to NHS England, firstly about the piss poor communications which meant it took a year and a half to get to the point where Ingeus, grudgingly, admitted it wasn’t able to support people who work during the day, and secondly about the stupidity of commissioning delivery from a provider unable to support a large chunk of the population for whom an early intervention programme could bring major benefits. Unfortunately, NHS England claims it didn’t commission the programme, which was a surprising given its website says it did (here and here). Maybe the NHS website has been hacked with fake news?

So now I’ve raised the same complaint with East Surrey Clinical Commissioning Group. I sent the letter over a week ago and haven’t heard anything back yet. I don’t have high expectations. I’m betting on a letter with some waffle about budgets being tight, brushing over why a small portion of it couldn’t be put towards people who need evening appointments, especially given the long-term cost saving to the NHS from doing early intervention properly. Or perhaps it’s deliberate, and it was always intended as early intervention for older people, but Ingeus just forgot to mention this when put together communications material?

However, I’ll end on a positive note. I had my annual check-up last week and my blood sugar levels are stable, even if they are still in the pre-diabetes range. I also have an appointment lined up next week with the diabetes lead nurse to discuss possible ways forward.

Looking forward, looking back...redux

I had my latest visit to the consultant on 18th December. Nothing much to report. My weight was c.114.5kg, pretty much same as three months earlier, and my stats were the same. It was slightly disappointing that the results of my Hep B screen hadn't come through given it was done at same time as my regular bloods. So, I'll be doing that again next time out. Given the stability the consultant suggested we move to longer intervals between appointments, originally we did every 4 months, then in last couple of years it became 3 months, so we're going to go back to 4 months with a view to moving to 6 months if nothing changes.

Unfortunately that does mean my next appointment falls in the middle of a planned holiday to Florida, so it's going to have to be moved. And whilst I'm doing that I need to sort out some specialist travel insurance, I do have travel insurance as part of my banking package, but it doesn't cover CKD related issues due to it being a pre-existing condition. Whilst the chances of a CKD related incident are pretty low, the notorious cost of US healthcare makes it better to be safe than sorry. Whilst spending Christmas up North I was down the local with my Dad and brother when I saw a fundraising poster for the son of a regular, this guy suffered serious head injuries whilst quad biking overseas with no travel insurance, it took major effort to get him home and to pay for his ongoing needs.

Talking of Christmas, I've been doing my best to moderate my eating and drinking, although it's not been easy. I returned from my parents weighed down by nut related chocolates. Before Christmas my wife told me she'd seen some oversized Reeces peanut butter cups, but she'd wouldn't buy me any as they were excessive (she doesn't like them anyway), I chided her for being selfish and hey ho I end up with a packet in my stocking. Eachcup is a whole 2lb in weight, I love Reeces, but the thought of eating almost a kilo of peanut butter chocolate makes me feel sick, I'm going to have to cut them into 4 and eat a piece a day. It doesn't end there, I got a pile of Toffifees and a Reeces selection box too.

Last year we did Christmas at home with my wife's family, and New Year with mine up North, so as usual we rotated this time out. Tonight we're having friends over for dinner, and I'm contemplating getting in a mini keg of bitter, whilst tomorrow will be Christmas Day Mk2, where we repeat the 25th December only with my wife's family. I'm not a big one for roast dinners, but Christmas dinner is usually a bit better mainly due to the lovely sprouts and pigs in blankets, but still it's going to be calorific.

Looking back at my post from exactly a year ago today is a mixed bag. My weight is kicking around 2kg up from where it was at that point, and the 'Healthier You' programme has yet to put on a clinic I can get to, on the other hand I had the all clear from my vasectomy and my CKD has been stable. Away from health issues, I've now done almost a year in my new position, worked on some interesting projects and picked up some new skills along the way. My podcast project has pretty much stalled due to lack of time, and I've gotten no better at posting updates on my blogs. Overall it has to count as a good year, I may not have made all the progress I wanted, but I've not gone backwards; let’s hope 2019 brings new impetus.  

Update: the Reeces cups were not 2lb each they were 1/2 pound each, but still plenty sickly and best eaten a quarter of a cup at a time. 

The not so early intervention programme

Diabetes is back in the news, so seems a good time to finally write that piece about my own experiences with pre-diabetes.

Early summer 2016 my GP warned me a HbA1c test result indicated I was (just) in the prediabetic range. Then in late 2017 he put me forward for a new early intervention programme called 'Healthier You'. A perfectly sensible referral given my medical history, my weight issues, my CKD etc... Unfortunately in mid 2017 another HbA1c test (just) dropped me out of the prediabetes range, the weight issues and the CKD were obviously still there. However, whoever assessed the referral saw the new result and rejected me on an arbitrary line in the sand, more unfortunately they didn't bother to tell me.

In Spring 2018 another HbA1c test result put me back in prediabetic range, everthing else staying the same. I tell the practice nurse 'I'm waiting to be contacted by an early intervention programme', she checks the computer and finds the rejection letter I never got and flags itback to the GP who raises the referal again.

A month or so goes by, making it about six months from the original referral and I'm finally contacted. The advisor offers me a place on a series of clinics running in nearby Caterham, unfortunately these are in the middle of the afternoon, when I'm at work in London. It's an hour and fifteen minutes travel in each direction between the office and the venue, so if I want to attend I need to book an afternoon off work for each appointment. I told the advisor this was no good as I don't work locally, she told me I could go on the waiting list for an evening clinic, that was four or five months ago and I've still to hear anything back.

My own researches suggest that 'Healthier You' is actually the name of two NHS backed diabetes prevention programmes. The programme offered by Surrey and Sussex Healthcare Trust is delivered by a service provider called Igneus, but the version of the programme offered in the location where I work is delivered by ICS Health & Wellbeing, so it's not a case of swapping to a more convenient location.

It's been almost a year since the initial referral, so I am starting to wonder if I will ever get a place, my suspicion is the programme is essentially designed for people who don't work, or who only work part-time, taking multiple afternoons off work isn't really a helpful strategy for people like myself. Commercial 'Fat Fighters' style weight loss clubs tend to offer a variety of convenient time slots and locations to maximise effectiveness, it would be nice to think an NHS diabetes prevention programme would take a lesson from this, but public 'services' are not always known for their focus on the end user.

Not dead...

Very busy lately, so no time for blogging. I had my latest appointment with the consultant about a month ago and my numbers were stable. My weight was just under 115kg about the same as three months before, and around where I've been stuck for probably six months.

As far as I'm aware I'm still on the waiting list for the evening instances of the 'Healthier You' pre-diabetes clinic, I'll eventually get round to blogging about that malarky.

I had my final Hep B vaccination shots a couple of weeks ago (I got a last minute appointment and they threw in a flu jab as a bonus), so now I need to have a screening done with my next set of bloods in December.

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!

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! 

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.

More BMI Bonkers!

Another bonkers story about NHS health rationing based on BMI junk science. It appears certain NHS Trusts are rejecting joint replacement operations for obese people who have BMI over 35. They are supposed to go away and lose 10% of their body weight to be reconsidered. Having suffered from gout in the past I know that joint pain is a serious hindrance to leading an active and healthy lifestyle, but gout is sporadic rather than permanant, so God knows how those who need joint reaplcements are supposed to get around this problem.

I'm currently BMI 36 and could probably cheat under 35 by starving for a few days ahead of any medical, but at the start of 2016 I was close to 40. Losing 10% of my body weight (c.13kg) took a year to do and it certainly wasn't trivial, it took lifestyle changes including changes in physical activity. That's where the stupidity of this kind of rationing comes in, to get the treatment they need these people need to lead a healthier and more active lifestyle, but without that treatment they will struggle to lead a healthier and more active lifestyle. Plus if my experiences are anything to go by there will be little in the way of practical support to overcome the lack of acute treatment.

Target hit, well sort of…

I had my Consultant appointment on Tuesday, and by some strange fluke I managed to weigh in at 111.2kg, which was a bit of a surprise as I’ve been pretty consistently weighing in between 112kg and 113kg in recent weeks. I’m pretty certain that 112kg to 113kg is my current stable weight range, so I’ve created a bit of a rod for my own back, when I go back in four months I’m going to need to be under 110kg, which means a loss of at least 3kgs, and that’s not helped by me being a bit naughty ever since Tuesday!

On the positive side my Consultant is happy with my progress, she says my stats are strengthening and showing definite improvement with the weight loss and the medication regime. The closer I get to the ultimate target of 100kg the more time I’m giving myself before I end up on dialysis and the transplant list. I’ve also been free of gout attacks for a long time now, which is a very physical sign of improvement.

BMI, healthcare rationing and casting of runes

No posts for a while, nothing much to say. Recently my weight has been fluctuating between 114kg and 115kg. Everything has pretty much plateaued, my activity levels are good but not exceptional, finding time to fit in extra exercise is challenging. Weekends over the past few months have been taken up by DIY (painting fences, painting the garage, replacing guttering etc…) and just recently with various family commitments. Now the weather has turned the idea of going for a jog in the cold, wet, dark evenings is not one that fills me with joy.

My diet has slipped into what I'd describe as a normal pattern. I'm not pushing hard to cut out calories like I did earlier in the year, but at the same time I am showing self-restraint in what I eat and drink. Sweet things are restricted to a couple of times a week and to normal sized portions. Compare that to 12 months ago and the difference is significant, back then I would eat a chocolate bar most days, and sometimes I would have more than a single serving of a sweet or chocolate on the same day.

That step change means I'm not too worried about the Christmas season, I know I can moderate myself when temptation is all around me, although I’ll need to be tough with the inevitable influx of office mince pies. The big question is whether having achieved a level of stability the time is right for another push? I have about six weeks till my next consultant appointment in early January and it would be good to hit 111kg at that. That's around half one pound a week, achievable but challenging given the season and the fact I’m starting from a lower calorific intake than at the start of the year. It would bring my total weight loss for the year months to around 14kg, over half way in my battle.

One significant positive from the whole exercise is that my BMI is now around 36 when it was tipping 40 at the start. I don’t personally hold much faith in BMI as it’s got more than a whiff of pseudoscience about it, but it’s a pseudoscience that is increasingly being used in the rationing of NHS treatment.

I recently arranged to have a vasectomy a.k.a. “the snip”. The NHS has contracted the procedure to a private hospital and I was told at the initial consultation a BMI over 40 would have seen me rejected. As I actually got the initial GP referral over a year ago, but couldn’t get suitable time off work, I would probably have been declined had I proceeded immediately. It needs to be stressed this isn’t a rule based on genuine medical science, the hospital will still carry out the procedure on people with a BMI over 40, but they have to pay privately. This seems a bit of a nonsense as the procedure is non-emergency under all circumstances, it isn’t particularly complex, and there isn’t a massive waiting list (I was able to obtain appointment slots easily). 

Surely in this day and age there must be more sensible ways of rationing treatment (if rationing must occur at all) than the arbitrary application of pseudoscience? What next, NHS treatment allocated on the basis of casting of runes?

Side Effects of CKD

One of the funny things about CKD is that until you get down to the final stages it has little in the way of external symptoms, this is one of the reason why early warning signs weren't pieced together in the development of my own CKD.

Around fourteen years ago I had an ultrasound scan to investigate a stomach problem and the technician noted my right kidney was very small, which wasn't actually as big a surprise as it might have been given my Mum had one kidney removed as a child and my brother was born with only one kidney (albeit his one kidney is apparently larger than typical). But that comment was tangential to what the scan was actually for.

Then around ten years ago a routine check at my GP's surgery had picked up that I was suffering from mild hypertension (higher than normal blood pressure), but it wasn't considered significant enough to treat because there was no link to my kidneys. Then a little while later I failed a medical due to protein being detected in a urine test, my GP investigated further but the conclusion was that there was nothing to worry about. These disparate pieces of information did not link together and therefore no steps were taken early that might have prevented some of the deterioration that followed.

It was only after I had a procedure to treat two bulging discs in my back and the hospital flagged concerns about my blood pressure that the problem was uncovered, unfortunately by that time I'd also experienced significant weight gain due to the back problems (there is a whole other story for another time about that).

The only direct physical symptoms of my CKD is the sporadic gout, which has been getting worse as my kidneys get worse. But whilst gout is linked to CKD plenty of people with gout don't have CKD, especially overweight men such as myself. The only other physical sign of my CKD is actually a reaction to the Ramipril medication which has left me prone to sudden bursts of cramp in my calf muscles, something a previous consultant confirmed was a not uncommon side effect. I have trained my body through force of habit to avoid stretching too quickly in a morning, instead I gently work my way into stretches, I'm careful not to bend over too quickly in certain ways or to spend too long sitting in certain positions. Of course sometimes it cannot be avoided, sometimes I'll turn a certain way in my sleep and wake up screaming as the pain shoots through my legs and I have to get up and stretch my calves or I'll end up in pain the next day. It's not something my wife impresses my wife who gets woken up a stupid o'clock in the morning.

But I consider myself lucky so far, there may come a time when I'll look back in fondness to the days when gout and cramp were the only side effects.

Back to the GP

Just under two weeks ago I received a letter from the GP surgery informing me they'd received the letter from the consultant (my copy arrived a few days later) and asking me to come in and discuss the changes. So I called up and asked for a slot in the late surgery that runs on a Monday, I had to wait a week but as it wasn't urgent that was fine.

The appointment turned out rather timely as I've experienced another stubborn bout of gout and although my magic pills (a.k.a. Colchicine) were helping I can only take 4 a day for three days before breaking for three days and starting over again. The upshot is that the attack has stayed under control without fully clearing (I  dread to think what it would have been like without magic pills), and as I cannot start taking Allopurinol until I get properly clear of gout I'm in a bit of trap. I'm fortunate that I have no shortage of magic pills as the 48 the Consultant prescribed in May have been boosted by 150 the in-laws obtained over the counter in Northern Cyprus. They've also offered to get me some more in August if I need them which will rather depend on how the Allupurinol performs. My current supply should last a year assuming that heavy attacks remain an exception and the less serious ones clear within a day and a half of treatment, but it is quite literally a pain to run out of them during an attack.

I discussed the gout with the GP and he suggested a five day course of Prednisolone steroids (40mg once a day), which I was actually going to suggest myself given it worked okay last year. He described it as "using a sledgehammer to crack a nut" but I'm not convinced as last year I needed two courses of the same, admittedly that attack was more severe but I wasn't using magic tablets back then so there was no mitigation already in place. My hope is the steroids will break the current three day on/off cycle and next week I will be able to start the Allopurinol. Other than that we talked about coming off the water tablet and that I need to keep an eye on my blood pressure as we may need to increase the daily dose of Amlodopine (Ramipril is maxxed out). He also suggested I may need to come back after I've been on Allupurinol a little while and I've made a note to self to get more consistent taking weekly blood pressure readings at home.

My weight loss has pretty much stalled, no gain, but I'm still hovering around the 115kg mark I was a month ago. I have made an effort to get back into the swing of things diet wise this week, but an attempt at a new exercise plan stalled with the gout attack, so once the Prednisolone does its thing I'll be restarting that.