A trip to the surgeon

On Thursday I made a trip to the Renal Clinic to speak to the surgeon about getting a fistula placed in my arm to set me up for haemodialysis.

It started off with a visit to the ultrasound department for a scan of both of my arms. Unfortunately the results weren't good; in the words of the surgeon my ‘veins are rubbish’! Only one vein was potentially suitable and that was borderline, and given it was on my dominant arm it was immediately ruled out. So, she suggested I consider peritoneal dialysis, but having previously thought carefully about it, I told her it’s not something I want to do given the restrictions it would place upon my active lifestyle. So, I will need to have an AV graft, this obviously carries more risks, but I think the trade-off will be worth it given a standard AV fistula is off the table.

The surgeon also suggested I should be placed on the transplant list immediately, to give me the best possible chance of a transplant before I need dialysis. Unfortunately, IT issues meant she couldn’t see my medical records, so had no view of the work-up that has already been done to get me on the transplant list. Inability to share information properly seems to be a common issue in the NHS; my regular treatment is via a satellite Nephrology clinic hosted by my local NHS trust, whereas the Renal Clinic is provided by a different non-local trust (which also makes getting to the Renal Clinic a total pain). More worryingly, she didn’t even have access to the treatment provided by the NHS trust that hosts the Renal Clinic.

The upshot is that I am going on the waiting list for an AV graft and there needs to be some sort of paperwork done to get me on to the transplant list for a kidney. Apparently, I need a referral letter from my Nephrologist, but perhaps more importantly the surgical team need to be able to access it. My Nephrologist was at the Renal Clinic that morning, but she had her own list to deal with, which is separate from the surgeon’s list. I’ll be seeing her in about a month’s time, so hopefully this can all be expedited then.

This coming Tuesday I will be going back to the dialysis centre at Crawley, I’m not quite sure what for, given that I have already had an ‘education session’ there. Hopefully, it won’t just be a re-run of the same material I’ve been presented with at that clinic and at the Renal Clinic.

The surgeon also raised the issue of my weight, and that I should try to lose weight if I want to avoid any related challenges to getting a transplant. I obviously agreed with her, but made the point that this isn’t as easy done as said, and explained the efforts positive and negative I’ve already made over the last decade plus. The fact that actual medical support has been rather underwhelming, and my previous tactics for weight loss are increasingly ineffective is a stumbling block (I think there’s a whole other post here). 

Back at the beginning of my diagnosis, the original Nephrologist suggested to my (then) GP I be put on Orlestat, but the suggestion was ignored. I did get a referral to a dietitian at one point, but that was a waste of everyone’s time, when I told the surgeon the dietitian had basically told me to eat yoghurt for breakfast and printed off some generic fact sheets from the NHS website, she just laughed and said that’s ‘what they do’ and that basically dietitians are ‘still stuck in the 19th Century’. Anyway, I have emailed my GP and got an appointment to discuss what genuine medical support might be available. My experience over the last decade has left me with low expectations, the NHS talks big on obesity, but rarely seems to deliver. Maybe I’ll be pleasantly surprised, if they refer me to a dietitian again, or one of their talking shop support groups I’ll politely decline, I just don’t have the bandwidth for messing around.

And so we move on, if not necessarily forward!    

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.

August Update

It’s been a while since my last post, and quite a lot has happened in between, so I’m going to break it up into three posts, one for each month.

After coming back from my trip up North to see family, I had a busy week at work, where I finally started to get my head around my new role. Then I went off to Spain with my son for a week and for then he stayed with me for most of the following week as I saw out the second week of annual leave.

I had my annual medical with the practice nurse on 9th August, everything was okay. Obviously my kidney function is still shit, but it’s a stable kind of shit, and my blood pressure was good which means the Bisoprolol Fumarate the Nephrologist added is doing its job (I found out it’s a beta blocker, which I hadn't realised, and was a little surprised by given my previous resting pulse was 50-60 bpm). I was 3kg lighter than last year, although my good cholesterol had gone down a little and my bad cholesterol had gone up a little. As a random bonus she offered me a pneumonia vaccine, as I’m apparently eligible for one, and I figured given the winter of discontent the UK is facing I’d take it!

I explained to the nurse how my weight loss has plateaued, probably due to my diet being too heavy on carbs, and my concern about how much protein I should be eating without overloading my kidney. She made an appointment with the practice dietician for September. I’m not holding out for that much as previous referrals for weight management have gone nowhere;  I’m pretty sure that shifting from carbs to protein will improve my fitness regime and help me lose weight, but I don’t want to wreck my kidneys in the process. 

Like the physio I saw a while back (which went nowhere) the nurse suggested I protect my knees by swimming rather than jogging, but the reality is swimming doesn’t have the same impact (no pun intended). I realised I hadn’t run a single 5k in 2022, the furthest I’ve managed being 3k, so I decided to do the whole couch to 5k programme again to rebuild stamina. The early weeks were pretty straightforward given I’m not starting from scratch, but it did set up the pattern I needed. I also bought a new pair of running trainers from Decathlon, their unpronounceable own brand, to replace my worn out Nike. Decent trainers and strapping being the key to injury prevention.

The week in Spain was relaxing, the hotel in Salou was nice, there was a decent choice of food and the facilities were good, although it is noticeable that things are more expensive than they used to be (partly inflation and partly the shite exchange rate). Being up on the Costa Dourada the ubiquitous local beer was Estrella Damm, but I made an effort to try as many different beers as I could (it’s a hard life sometimes) and actually became pretty enamoured with Lemon Damm, a kind of shandy beer which went down a treat of a baking hot afternoon.

We spent a few days on excursions, one to the local waterpark, one to the nearest city of Tarragona, and one up to Barcelona. The plan was to go to Tarragona on market day, to see if we could find any knock off football kits, as it was, the clothing market was pretty meh! But the indoor food market was stunning, which was just as well, as we had to hide inside for an hour to avoid a massive thunderstorm.

Once the storm cleared we took a walk down Rambla Nova to find the Roman amphitheatre. A little disappointingly we couldn't go inside as I forgot to bring a payment card with me, and the ticket office wouldn't accept cash, fortunately most of the site is visible from the park that surrounds the ruins. As we were heading back into town we came across a parade for a local festival, we couldn't really avoid it due to the sounds of the marching band and a man at the front firing a small cannon every twenty metres! After stopping for lunch I took a quick look at the cathedral, but I didn’t get chance to go around as my son was starting to get ratty from all the walking and wanted to go back to the hotel.

The following day we took a coach trip up to Barcelona; I’ve been a couple of times before, so had already visited the big attractions like Park Guell, Las Ramblas and Sagrada Familia. I had hoped to go to Sagrada Familia again, but there wasn’t time on this excursion. In the afternoon we visited Camp Nou to do a tour of the football stadium. I’d last visited about twenty years earlier, during the off season, that time it was less busy and also a lot less commercialised, but my son really enjoyed the experience. 

The final week of my leave, when we got back to England was pretty chilled. The weather was decent so we did a bit of swimming and played some football in the park. For the final week of his school holidays my son went off to Turkey with my ex and his sister and I headed back to work.

Going Backwards

So, summer has been and gone and as autumn rolls in I find myself with some work to do.

Firstly, on the podcasting/writing stuff I do have a plan to get things going again. I know I keep saying this, but with things settling down into a routine I can see some opportunity to fit this in over the next couple of months. 

Diet wise things have gone pear shaped, or rather I've gone a bit pear shaped. Although I managed to keep a lid on things over my holidays, since mid-August my weight has crept up from 108kg to nearly 110kg. This is very disappointing, especially as it's not down to bingeing, it's just a general relaxation in habits; a couple of beers too many times a week and a chocolate bar on too many days. What it has taught me is that I really cannot slack off, ever! My metabolism simply does not allow for any complacency. I have started a new diet, a week in and it hasn't made any difference yet, but I need to give it till the end of September before I hit panic. The goal now is to end the year at 107kg.

Fitness wise I have been managing a 5k run most weeks, with some shorter runs if time allows. I do walk the dog at least once day, often two of three times a day, so I'm getting cardio in. However, my right knee is seriously fucked now, running is genuinely painful, if I can't get it suitably warmed up then it's incredibly difficult and I've found myself abandoning runs half a kilometre in due to the pain. Walking up and down stairs is painful, at certain times walking anywhere is painful, I can wake up with an ache simply having slept in a certain position. I have contacted my GP surgery for a non-emergency consultation and I'm waiting for a response but given the horror stories in the news I'm not hopeful. 

I'm still resistance training three to four times a week with bands and free weights, so my core strength is pretty stable, I could do with more intensity in my training, but it's hard as I'm usually fitting it in later in the day, when I've already done work and family stuff, and my energy is waning. With a bit of rejigging I might be able to do it earlier in the day sometimes. I probably also need to start using the exercise bike to replace the running I'm no longer able to do.

Work has been pretty busy, but the return to the office has been slower that I initially imagined, I have been in once, and I will probably start going in once a week from later this month, but it's likely to be November before I'm in a stable pattern of twice weekly office attendance. This is assuming we don't have another lockdown in late autumn/early winter.

CKD wise I have my next telephone appointment on 28th September, I am a little worried about this, given the last telephone appointment never happened as the doctor was unable to reach me on either telephone number despite no calls being logged that morning on either number. I did check at the time they have correct numbers, so assuming it goes ahead this will be my first direct contact with a specialist since November 2019!

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.

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.

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. 

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!

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.

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! 

CKD on BBC News

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

London Bridges Walk 2017

I’ve signed up for Kidney Research UK’s London Bridges Walk this coming Sunday. I registered my interest in it a few months ago, and received an email saying I would be contacted when registration opened. Sadly, no such follow up happened, but I remembered to check back periodically and registration actually opened late last month. I don’t know whether they planned to contact me but I got there first, but it does make me wonder how many other people expressed an interest but never got contacted? Online registration is closed now, but people can still sign-up on the day for £10. 

It’s a seven mile walk across many of London’s iconic bridges. It might sound a bit anti-social but I’m quite looking forward to doing it by myself, I enjoy walking, but usually there’s a very functional purpose like getting to work. I don’t often get the time to go for a good long walk without any distractions, my wife has her own interests she’d probably prefer to spend the time on, and I know the kids would only complain about being bored or tired or more likely both after half a mile!

Kidney Research UK sent through the route map earlier today, it’s fairly familiar territory as I’ve worked in and around Central London for over fifteen years, and the course skirts close to both my current and previous employers. I’m going to try and put together a topical podcast playlist I can listen to as I make my way around, I haven’t found the right ones yet, but I know there are a variety of London podcasts out there covering the mix of culture, history and folklore I’m looking for.

I was also hoping to sneak a few crafty beer stops on route, but I rather fear the pickings are slim without taking too much of a detour. There are a few pubs along the route, but a few of them are shitholes or tourist traps, what comes from hugging the river. It’s probably no bad thing really, I’d only have about five minutes to neck a pint and have a pee, and no doubt once the seal is broken I’d spent most of the seven miles bursting for another! I’m also not sure how endearing it will be to more advanced CKD sufferers who have restrictive fluid intakes. Besides, afterwards I’m meeting up with the wife and kids for an early birthday treat at Byron Burger so I can save my 'dead' calories for that.

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.

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.

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.

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