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.

Musings on pre-Diabetes and dieting

After my GP's recent disclosure that I am at high risk of developing diabetes, I have defaulted into self-education mode, which has loud echoes of what I did when I was diagnosed with CKD. In some ways it is a shame that the NHS isn't a bit more proactive with constructive support, admittedly both my GP and consultant have encouraged weight loss and a healthy diet, but I am already attempting both to some success and it's pretty generic advice short on the specifics of what will deliver actual results.

It's still a bugbear of mine that in early appointments after my CKD diagnosis the (previous) consultant and registrars I saw debated referring me to a dietician and prescribing Orlistat but never did (although they never definitively ruled them out, it was more a decision for another time that never came). I even discussed Orlistat with my GP, but again without meaningful conclusion. It was only when my first phase of weight loss flat lined at 125kg that we skipped to the nuclear option of stomach surgery, although ironically that requires a referral to a dietician first. Without abdicating my own personal responsibilities; I suspect I’ve been hoodwinked by the schtick around the NHS getting serious on supporting health issues earlier when costs are lower.

The surgical option has been withdrawn from the table for now, but I still think I could benefit from professional advice on dieting that is tailored to me rather than the hypothetical Mr Average. Pre-diabetes adds an extra complexity to what is already a minefield of conflicting advice. I avoid adding salt where possible and reserve certain foods such as crisps and peanuts as occasional treats, I try to opt for low fat and low sugar options whilst being mindful that when either fat or sugar is reduced in many products the other is substituted to maintain palatability. I believe that many of the staples of my current diet such as bread, pasta and potatoes are much reduced in diabetic diets, but removing them from now is not straightforward, I need genuinely palatable alternatives that are capable of making me feel full need to take their place. Palatability is a major weak point in many diets, and substituting staples with alternatives that leave you hungry half an hour later is setting up for failure.

Politics, CKD Humour and New Challenges

A couple of weeks ago my fellow residents ejected me from the local parish council (civil parish, not church), bringing down the curtain on a short and relatively undistinguished career in local politics. Nobody is mourning the passing of my (lack of) political ambitions, least of all me. I voluntarily chose to vacate my seat on the district council last year despite a good chance of retaining it and this year I eschewed the opportunity to move to a safe parish seat despite the high risk of not being re-elected  (a process dubbed the "chicken run" before the 2014 Croydon local elections when senior Conservatives shifted themselves out of risky wards). But at least now I get to tell people I have retired from politics to spend more time with my remaining kidney function.

I did enjoy most of my time in local politics, it opened up new perspectives, developed new skills, and I learned a lot about how politics actually works from the inside; the good, the bad and the ugly. Politics can be a dirty business, but that's not solely down to the minority of politicians who are warped by the (often limited) power they receive, but also by sections of the electorate only too willing to be diverted by trivia or indifference. Now it's time to focus on some new challenges.

A Moment of Truth

So the moment of truth came when I stepped on to the hospital scales and weighed in at 115.2kg, a 9kg loss since my previous appointment in January. My consultant was pleased and despite the flu and gout that plagued the months in between my kidney function was stable, with eGFR up 1 point at 28. So for now I’m holding my own and the more weight I lose the better some of the readings will get, although nobody is pretending there will be a fairy tale ending to CKD.

I explained about the gout attacks and it was agreed I could ditch Furosemide given it was probably doing more harm than good, and in her own words she doesn’t want me getting down to 100kg only to have worn out joints. I still need to take the higher dose of sodium bicarbonate, and if I feel like I’m retaining water I need to start taking the water tablets again. Fortunately to the best of my knowledge I’ve never suffered water retention, either that or I have and just haven’t realised it.

I got a prescription for Colchicine (a.k.a. magic tablets) which pretty much took care of the current attack in three days. I’m now waiting to be fully clear so I can start on a low daily dose of Allopurinol, although I’ll also need to take a couple magic tablets every day for two weeks to mitigate against a new attack when I start. At the moment the swelling is gone from both feet and I’m taking decent walks, but there is still a little residual pain in a couple of joints I want to clear (also my in-laws are going to bring me back some more magic tablets from Northern Cyprus in a couple of weeks so I won’t risk running out at a crucial point).

In the afternoon I saw my GP for my annual check, most of the blood readings (kidney function aside) weren’t noteworthy but did warn that I’d flagged for pre-diabetes and needed to look at my diet and weight. I explained about the weight loss programme to get down to 100kg so I make the transplant list when the time comes, he seemed tiny bit surprised we were looking at that outcome already, but didn’t challenge it when I said it was inevitable at some point. I just need to carry on with what I’m doing, there is no other treatment needed.

So now the challenge is to fight complacency on the diet front, I have slipped a little lately, not massive binges, but a little less disciplined than a couple of months ago. Getting rid of the gout and the better weather should enable more exercise, I’m thinking of treating myself to a fit bit for my birthday which will hopefully act as challenge to my activity levels.

Diet Update Week 15 – Mixed Blessings

It's been awhile since I posted an update, this blog has temporarily been relegated to the furthest back of back burners (it has always been a low priority).

The good news is that I hit my target of 117kg about a month ago, my reading on Wednesday, on a brand new set of scales put me at 114.9kg. My next visit to the consultant is this coming Tuesday morning so it will be interesting to see what the hospital scales say (I also have a session with my GP in the afternoon). 115kg seems a bit too good to be true. Although I'm pretty much sticking to my diet, I've started allowing myself a little more leeway such as treating myself to chocolate a couple of times a week post-Easter fast. I've also tended to drink less alcohol lately as I'm worried it could be aggravating recent gout attacks, although I've been a moderate drinker for years so it's probably negligible in terms of calories removed from my diet.   

The bad news is that my general heath has been pretty rubbish for about two months now. Over Easter I had bout of flu, and I'm not talking about "man-flu", on Easter Sunday I crawled in to bed at about 5pm with a full on fever. This is despite the annual flu jab late last year. I never get flu, but this year it hit me like a locomotive. It took weeks to fully get over it, even after the worst had passed I went through several weeks of feeling run down, tired and lethargic. The mucus cough wouldn't shift, I couldn't sleep properly, I experienced ear infections and temporary deafness.

The next problem has been a chronic attack of gout that has lasted for over three weeks now, albeit with fluctuating levels of intensity. First in my right foot and currently in my right foot. I haven't allowed it to stop me, but it has been terrible for mobility, I've had to reduce my morning walks partly to manage pain and partly because I was taking too long to get to the office. I made a decision last week to temporarily suspend my water tablet (and consequently the sodium bicarbonate it's intended to counteract), I'm fairly certain this didn't cause the attack, but it's probably prolonging it as raised uric acid levels are a common side effect. It hasn't helped that I've exhausted the stash of colchicine I brought back from Turkey last summer, I'm not a big advocate of 'self-medication' but I stick to the usage limits and it's very handy when a Turkish pharmacy will sell you 50 tablets for £2 without a prescription (an NHS prescription 12 tablets for £8.40, but getting a convenient appointment is the difficult part).

I can spot the signs that gout is impending but I've never been able to work out the trigger, if indeed there is any one specific trigger. This time I noticed that the initial flare up came after eating a meal containing chorizo sausage, and there was a noticeable spike in pain the two weeks later when I ate chorizo again. However, I've eaten chorizo many times without getting gout, there are probably other commonalities I've missed, and there have been other spikes in this current attack where chorizo is nowhere to be seen. It’s all a bit mystifying, I’ll have plenty of things to talk about with the docs next week.

World Kidney Day

Today was World Kidney Day, a day aimed at awareness of kidney health. Hooray! How do I know this, well because I stumbled across it by accident when I was searching again for an article I read a couple of weeks on the BBC website about a breakthrough in 3D printing of human organs.* If the BBC’s own search capability wasn’t so crap I’d never have found out about World Kidney Day, or at least not today (in case you’re wondering I found the article via Google). It’s quite funny really, given my own rather obvious interest in kidney issues that I had to stumble across a major initiative by accident, maybe I need to sign up to a few more resources to keep in the loop?

* I’ve been meaning to write a post about how encouraging some of these medical breakthroughs are to someone like me who is likely to need a transplant in the future. I’m fortunate to be living at a time when such developments are happening, and be at a point in my life (and disease) where such things could bring meaningful benefit). A subject I’ll hopefully have time to revisit in the next few weeks

Diet Update Week 6 – Steady Progress

Week 5 was positive with a 1kg loss, which was a relief after the disappointment of the previous two weeks. Week 6 was flat, but I wasn't too concerned as I didn't expect much due to having a big family meal out on Sunday (Mothering Sunday). So at latest reading I'm down to 120.6kg, my lowest since I started the diet, with total weight loss over six weeks a shade over 4kgs. My next visit to the consultant is nine and half weeks (wasn't that the name of a dodgy 1980's erotic movie?), so I'm aiming at 118kg for that appointment, with 117kg a stretch target, but given the natural slowdown in diet results and the upcoming Easter season 118kg will be tough enough to achieve.

I still haven't had the GP letter calling me in for the medication review, but I'm okay about that as long as the diet is working. I'm a couple of weeks off the end of my current prescription and I'd rather make changes at the same time as I get my repeat rather than have out of sync prescriptions. The new schedule will include a water tablet in the morning, something I'm going to have to manage carefully, it's not as if I have any trouble needing a pee first thing, besides every time the kids wake me in the night I end up going to the loo and I definitely don't want to be caught short on my morning commute. I really do need to find out more about the effects of diuretics before I start, I've already read they're unsuitable for people with gout, a condition I suffer from occasionally. The water tablet is to counteract an increase in my dose of sodium bicarbonate, my consultant is aware the existing dose is already having a negative effect on my blood pressure, so I'll be switching to taking in the morning alongside a water tablet to flush the salt out of my kidneys as quickly as possible. One thing I definitely do need to do is start taking more regular readings of my blood pressure so I can judge what the effect is.