In 2004 I was finding myself feeling uncommonly tired. I was also up most nights peeing, a lot!

A visit to my gp resulted in a little test – check my blood sugar, give me a sugary drink and test it again 30 mins later.

Well, the look on the face of nurse had me worried and the reaction from my gp had me REALLY worried “get to the hospital, now.”

It was then that I learned I had type1 diabetes.

Back in those days, knowledge of diabetes was patchy at best and pure ignorance at worst – my treatment consisted of “read this pamphlet” and a change in diet. That was it. No proper education, no insulin, just a change in diet.

6 months later, I had lost a LOT of weight – down from 14.5 stone to just 8.5 stone.

Stresses of work, moving home, and general life put a lot of strain on me as well as this misunderstood medical issue and it was not until my family and I moved and I was put under the wing of a, honestly bloody good, specialist; an insulin reigime started.

Diabetes Management

Managing diabetes is not a text-book exercise. Every patient is different and there are a lot of subtly different forms of diabetes too 1,2,2.5,3 take your pick but 1 or 2 are the most common.

Anyhoo – it affects everyone differently and to varying degrees. My specialist was conviced for many years that I wasn’t injecting insulin properly, or even at all – though I most definately was.

There were constant threats of “you will go blind”, “your feet will be amputated” but honestly, after the nth time hearing all that I was not worried – “diabetes may well kill me one day, but that day is not today”. I didn’t suffer from retinopathy, neuropathy or any of the other scary issues that can follow poorly controlled glucose levels.

I still took it all very seriously. I attended educational courses aimed at diet, lifestyle and an emerging method – carb counting. Counting carbs and injecting according to carb intake opened up the possibility for me to eat better (happier) and I eventually started putting weight back on again.

Things were looking good. My Hba1c was getting lower, my need for insulin (in a 24hr period) reduced and I regained stamina, strength and general wellbeing.

Now I’ll not claim to be a saint – there were (and still are) times where I didn’t do what I should have. Carb counting every meal is easy when you eat the same things day in, day out. But eating out at a restaurant, calculating what you might need for that familiar meal but having had a strenuous day doing building work / some other exersion? Yeah – much easier to eat and the correct afterwards.

Still – I had no symptoms I felt I needed to worry about at all and felt very lucky compared to other patients I had met socially via the hospital who had skin-grafts, were on liquid morphene and all sorts of horrible ailments.

Let’s talk about feet

Around 2017, I had a very strange thing happen… I was getting ready for bed and realised my feet were really hot. Taking my shoes and socks off – I saw my feet and they were grossly swollen all the way up past my ankles. I didn’t appear to HAVE ankles, they were that swollen.

I chalked it up to having one too many beers, being a hot day, and being a lazy so-and-so just laying in the sun.

The next morning, the swelling was gone so I thought no more of it.

Nothing more of note happened for a long time until I got terrible back pain one summers evening. I took myself off to A&E and spent an oh-so-joyous 3 days in their care. This consisted of being pumped full of liquid via a drip for being dehydrated.

Upon returning home, my feet swelled up again and worse than ever before. Come morning things had settled down.

On-and-off over the coming couple of years I had a few repeats of this swelling and, in each case, I didn’t think much of it and the swelling was always gone the next day. In those days I was always wearing smart work shoes and sitting in the car in traffic for a good 3 hours every day so just kept putting it down to such influences.

Once, sailing back from the isle of wight, my hands swelled up and I stupidly put that down to salt water plus wrapping a rope round my hand (which is a REALLY stupid thing to do by the way).

Until, one day following swollen feet in the evening, I woke and my feet were still swollen and I had a terrible pins and needles feeling. Calling my gp I was quite swiftly refered to a Renologist.

At my first appointment with her, she stated I had high blood pressure and started me on some tablets. Almost immediately, the nighttime feet swelling, hot feet etc. were gone.

A month passed with no swelling, two months, 6, a year…; all appeared to be well with the world and regular (6 monthly) catchups with the Renologist merely resulted in more tablets and more nodding in meetings.

Covid

What a b***h this was for general medicine as well as obviously immediate and very sad impacts on people. Appointments were cancelled, medications stayed static. High blood pressure was by no means an immediately life-threatening condition, right, RIGHT?!

During all the lockdowns, face2face appointments for a lot of people were replaced with phone calls. I managed to get a telephone appointment or two and then a colleague of my Renologist rang as she was on leave.

In very broken english, we discussed my current blood pressure readings and during the conversation the chap said “…well you need to be careful as obviously you have serious kidney failure…”.

I was dumbfounded. Nobody had said anything about kidney function before let alone “failure”! Mind you, for many years nobody had ever bothered to take my blood pressure except the nurses when attending diabetes appointments and nothing was ever said about those results anyway.

I have a chart which shows my eGFR pre-hospital treatment and of course post-treatment. Its a shocker.

I thought “is this like when that CFS specialist put down on their report that I used heroin because they copy/pasted another patient’s data?”. But I Googled it. I Googled the hell out of it and it hit me. I did have kidney failure and nobody had ever told me. Not my gp, not my diabetes specialist, not my dietician, diabetes nurses and NOT even, my Renologist.

I had diagnosed kidney failure in the daughter of a friend years before – I knew the signs, I called it out LOUDLY, her life was saved (it was THAT close); yet I did not diagnose it in myself.

Shock

To say I was shocked would be a gross understatement. I was completely knocked sideways. Whilst at work in a meeting the next day, I lost the plot – too much was spinning around in my mind.

I took the week off and spent most of my time either intensly busy, or crying and shaking uncontrollably.

I had been handed a death-sentance. One which could have so easily been avoided. It wasn’t my fault, but I had no recourse to blame anyone and even if I did, it could not make the facts untrue.

It took me about 6 months of yo-yoing between denial and defeat before I finally settled on acceptance. I knew roughly what my life expectancy was now and there was nothing I could do about it.

Whilst yo-yoing, I treated people like crap. I was an utter bastard. I think out of fear but perhaps also jeleousy that they would outlive me and be fitter and happier whilst doing so. I burned a lot of good relationships so badly, I don’t think they can be repaired.

It’s odd how we hurt the ones we love most when we are at our lowest – it’s counter-intuitive to what a sane person would do I know.

So, there I was. Resigned to an inevitably fast decline. Now (still) threatened with immediate expiry should I get the flu even (kidneys could just suddenly pack up).

But. I have not given up just yet. There is hope, if not redemption…

The journey begins

Thus the journey begins and the creation of these pages which shall chronicle the ups and downs of what is an uncertain future but a future nonetheless.

After many months of stagnation in treatment, many MANY tests in hospital and discussions with medical professionals, I am now on the national transplant waiting list to have a combined Kidney AND Pancreas transplant.

The prospect of adding many years to my life and also ridding myself (for a while at least) of diabetes fills me with great optimism, as well as some modicum of trepidation.

It is true that these operations are, sadly, becoming increasingly common and are well practiced but there are still risks – lots of them. Some merely annoyances to live with, some life-changing and some life-ending. The fear has not been negated.

Now you have read my back story, I hope you will join me and follow all the steps I take and hoops I jump through whilst I FIGHT for survival. I hope my story both educates and informs.

Thank you, for getting this far.