I have a problem. Actually, to be honest I have many problems, but when it comes to my health it can almost all be reduced down to a single problem.
I avoid things I don’t want to deal with. Somewhere deep within I seem to believe that things I ignore will go away. If only reality worked that way.
In the beginning
I’ve been overweight for as long as I can remember. I’ve seen pictures that prove I was once a normal size, but I don’t remember it. I’m really not sure what happened but I know my self-confidence has always been very low and I was teased as a child constantly from many angles. I’m not sure which came first, the bullying or the weight problems, but somewhere along the line I lost any sense of self-worth I had been born with.
Looking back now I recognise that I simply stopped caring about myself. And to a large extent I still don’t.
In the early years, by which I mean up to my early 30s because nothing really changed during that time, I never thought it would be possible for me to lose weight. For that reason I never really tried. After graduating from university in 2000 I moved in with a friend for about a year and then, finally, moved into my own place in 2001. It turned out to be a very bad move.
Living on my own
For the first time since birth I was living on my own. I’d gone from my parent’s place to a university dorm to shared houses near the university to a house shared with a university friend. Now, finally, I had my own place.
It turns out I can’t be trusted to control myself when left to my own devices. I’d never been great at cooking for myself but as soon as I was in my own flat I was having take-out food every night, and my already minimal activity level because near zero. Other than going to work and occasionally socialising with work colleagues I became a hermit.
I have no idea exactly what happened to my weight (I’m pretty sure I wasn’t weighing myself at all, but even if I did my memory is not great) but no doubt it started to go up. After a short time in my first solo flat I was offered the flat above one of the company buildings. It came with free rent in return for being on-call for the fire and security alarms out of hours. I jumped at the chance. Have you guessed that it was another bad move?
Living above the office
It turns out that when you change your daily commute from several hundred metres to less than ten the effect is not healthy. And it gets even worse when you’re moved to an office that’s three feet from the front door of your flat. That happened a few months after I moved in.
I was still living on take-out, but it got worse. The office had a self-service tuck-shop which I took full advantage of. If I had cash I had sweets available a few rooms away; it was a deadly combination. That and drinking at least a litre of coke a day, sometimes over two, along with regularly getting through one to two large pizzas with sides all by myself over a couple of days was a recipe for disaster.
Luckily (sort of) I was only in my mid-20s and it took time for the effects to be noticeable. Unfortunately underlying problems that I didn’t know about were getting worse. In addition I was depressed, but I didn’t recognise it at the time; no doubt this was feeding the overeating.
Redundancy and the first sign
In early 2003 at the tender age of 26 I was made redundant for the first time from the first job I’d had since graduating. It was a big shock to the system despite it being several months in the making, primarily because it meant losing my home as well as my job. Suddenly the benefits of free rent didn’t seem so attractive.
I made the decision to move back to my parents’ place as I had also been pretty stupid with my money. Thankfully (I think) I was required to have a health checkup as part of changing my doctor. It was that checkup that identified type II diabetes. They also identified that I had an underactive thyroid.
For the diabetes the doctor put me on Metformin and set me up with a blood glucose testing kit. I like playing with new kit so I was quite enthusiastic to start with, but it didn’t take long for me to get over it and go back to old ways. Take-aways were out with my parents around but I found ways. Shortly after the diagnosis I stopped monitoring my blood sugar levels and just kept taking the Metformin. The dose was gradually increased as my sugar levels got worse until I was at the maximum recommended dose.
I could rant about the ineffective care I was getting from the GP surgery but that would be diverting the blame. They could have done better, but I know what I’m like and I doubt it would have helped at that point. I was not in the right place to make the required changes at that time.
I got another job within a few months and then proceeded to live with my parents for the next four years. The job was a long way away, taking up to ninety minutes to drive each way. I stopped at garages and other shops to buy the food I felt I needed to fill holes within myself. I was still depressed but still hadn’t recognised it yet.
I spent the four years living even more like a hermit and managed to completely pay off the debt I had built up at and since university. I had no social life outside of work, and very little at work. I enjoyed both jobs I had during that time but I have no doubt that this period had a negative effect on my ability to maintain a circle of friends, if I ever had such an ability at all.
Living on my own, the sequel
Eventually I moved to my own flat again and I fully went back to my old ways. I didn’t bother to register with a doctor, I was getting no medical care of any kind. I was however, starting to build a half-decent social life. Initially it was based around work but after I moved again in 2009 I had forced myself into a situation where I couldn’t avoid it. I had very cheap room in a shared house and was as closer to happy than I think I’d ever been. The following few years were some of the best of my life.
It was during the first move of this period that I accidentally discovered something that with hindsight is pretty obvious. I’m not certain how it happened but it had to be semi-conscious; I stopped taking my drugs, all of them. When it eventually occurred to me to check my blood glucose level about two weeks later I was very surprised to see that it was perfectly normal. I tested it by having a McDonald’s and checking it immediately after; still normal. I was blown away.
Motivation, finally
It was at this time that a very big influence came into my life and some of the effects was a massive shift in my physical activity level, general mental health, and eating habits. Looking back on it now I realise that it was a veneer rather than an actual change, but the effects on my weight and general health were very real.
In late 2009 I started walking a lot. It started by accident but that allowed me to get past the phase where it hurt to a point where I could walk for long periods without any adverse effects. When I realised that I started doing it as much as I could. At the same time I was spending a lot of time with one person and without me realising it had dramatically changed my eating habits. There are reasons for that and I may get into them one day.
My weight dropped from around 21st to just under 17st in about four months. I was feeling so good that in early 2010 I started dating again. I was continuing my walking and healthy eating, until I started seeing someone.
It took about nine months for me to realise two things. First, she wasn’t the right one for me. Second, I’d stopped walking and started eating too much of the wrong things again. The year following our first date at Norwich Castle undid everything I had achieved in late 2009 and early 2010. I don’t blame her, I simply lost sight of my priorities.
The fall
It happened throughout 2010 but it wasn’t until early 2011 after we’d broken up that I realised how far I’d fallen. Yet the frustrating thing was not the fall, it was the inability to get back up.
I knew I could do it. I’d already done it. In four months I’d lost about 5st, was feeling great, had been very active, and had almost bought an entirely new wardrobe. And my weight was now climbing, and clothes were getting tighter. But it’s ok, all I need to do is what I’d already done… again.
But I couldn’t. I’m still not certain why but I think it’s because there was underlying depression that had been hidden by a brief period of joy. I tried to get the joy back but so far no dice.
Breaking point
Fast-foward a bit to 2014. I’m working as a contractor for a company next to Victoria Station in London and living in Shadwell in East London. On my way home from work I change trains at the Tower of London and regularly stop at GBK for some dinner. I did that on what turned out to be a life-changing day near the end of February.
After eating I left the restaurant and crossed the main road that runs past the tower, and just before I reached the other side I was hit by a moped. It sliced across the lower half of my left leg breaking both bones and launching me a few metres down the road.
One fantastic passer-by, one ambulance, several morphine shots, and a painful A&E visit later I was in a bed on a ward awaiting an operation to pin my tibia. And that’s where we ran into a problem.
My blood sugar level was sky high. I can’t remember but I doubt this was a surprise to me. It had been at least three years since I’d even checked it. They had to delay the operation while they brought the level down. They pumped me full of various things to bring it down fast and I had the operation after a couple of days.
Recovery from that operation was difficult, but it was made longer and more difficult by their concerns over my sugar levels. They kept me there for three weeks which is very long for that operation. When I was discharged I was walking on crutches and had strict instructions to see my GP about the diabetes.
Kidneys
I saw my GP very soon after getting home and she set me up with insulin. Even without the healing leg and the problems that came from not being able to work, that time after the moped incident was one of the toughest periods of my life.
I had a great support system with parents and friends all chipping in to help me out when I’d let them (I don’t enjoy asking for help). It was getting used to the insulin that was most difficult. I found my sugar levels were unpredictable, and I struggled to get a handle on how much insulin I should take. However, my sugar levels were much better. At this time I was not making changes to my diet. That ridiculously obvious insight came much later.
One of the other things the GP mentioned was that my kidneys were damaged. At the time this didn’t seem expecially important based on the way she said it. She left it with a “we’ll keep an eye on them”.
I didn’t think about it again until 2016. At this point I had a job in Reading and after commuting from East London for longer than I care to remember I had also moved there. I had a GP, I was seeing them regularly, and my blood sugar was largely under control thanks to a CGM. Sometime in 2016, I forget exactly when, they told me my kidneys were getting worse. Specifically that I was rapidly getting close to moving from stage 4 chronic kidney disease to stage 5.
This was news to me. Unless I’d blocked it out nobody had ever told me I had chronic kidney disease, so to already be close to stage 5, the last stage, was one hell of a wake-up call.
Referral
It was at this time that I was referred to the renal clinic at Royal Berkshire hospital and I started seeing them regularly. They kept an eye on my kidney function, taught me all about what kidneys do and how to take care of them. I couldn’t help but think I should have been told all that a couple of years earlier!
At some point, I think during 2018, I was referred to the low clearance clinic. This is the clinic for people who’s kidney function is so bad they’re on the cusp of starting dialysis and needing a transplant. You get to know the dialysis and transplant staff, and they start preparing you for what’s to come.
For some reason this is when it became real for me. I can’t say I started to exercise but I did make dietary changes that had a significant effect. When I first started at the low clearance clinic they said it was likely I’d be on dialysis within six months. They were wrong.
Chatty surgeons
At the start of 2019 they started talking about creating a fistula. This is an access point for dialysis and essentially means creating an artery from a vein just above the wrist or upper arm. I can’t remember the exact date but I had that done at a hospital in Oxford in either June or July. The reason was that my kidney function had dropped to 10% which is when they start to contemplate dialysis.
The operation was interesting. It’s done under a local anaesthetic so I was awake on a table with my left arm stretched out while two surgeons dug around in there. They were very chatty, both to each other and to me. I was fascinated and if I could have been sure I would have been able to handle it I would happily have watched.
Recovery was pretty quick. Stayed with my parents for the first week and then returned home. I was back at work within a couple of weeks. Then the waiting began.
Merry Christmas
About a week before Christmas I had an appointment with the low clearance clinic and that’s when everything changed, again. She basically said we need to start dialysis ASAP. I was keen to wait until after Christmas but she said that wasn’t advisable. They would let me know when my first appointment was and to expect a couple of sessions before Christmas.
The call came, the appointment was on Christmas Eve. I was spending Christmas at my Uncle’s house in Northampton. Bit of a pain but couldn’t be helped. I drove my mother and I down to Reading for the appointment, and she drove back to Northampton after the two hour session. Not the best way to do it but we made it work.
The first session was largely uneventful. Having a fistula needled is not a pleasant experience, especially the first time when you have no idea what to expect. The dose that first session was low so I had no adverse effects. The next session was scheduled for Boxing Day so I had a clear Christmas day which I enjoyed as well as I could. I don’t do well when I don’t know what to expect; I suffer from anxiety and usually control it by understanding as much as I can about what’s going on. I knew what dialysis is, what it does, how it works, and the mechanics of it, but what no amount of Googling could tell me was how I would feel on it.
I found everything from stories where everything went smoothly to absolute horror stories from complications. I knew everything I could know but some big questions still went unanswered: what was it going to feel like and how would I feel between sessions?
I’d spent several years now with very little energy, and the last twelve months had been particularly bad, so I was pretty sure whatever happened would be better than that. The next few sessions came with bouts of pretty bad nausea but overall it was bearable, and my energy levels were starting to rise.
Too much too soon, or just bad luck?
On January 2nd I went to work. I was feeling pretty good and didn’t think there was any reason to continue resting. Another mistake but it’s unclear whether that was simply because I went back too soon or because I picked something up while there.
At the next dialysis session I had a fever; I thought I was just sick from the dialysis. About twenty minutes after being hooked up, according to my mother who was still accompanying me as suggested for the first couple of weeks, my eyes rolled back into my head and I passed out. My BP had tanked. When I came back around they assessed me and decided to continue the session while also taking blood to find out what was going on.
About half way through the session they said they weren’t sure what it was but that it might be a viral infection so they were arranging for me to be admitted. After the session I hung around waiting for a bed to be freed up and a porter to take me there. By the early hours of the morning I was in a private room trying to rest.
The next morning I was told I had tested positive for influenza type B and told they were waiting for a few more tests to make sure it wasn’t viral. At around lunchtime of the second day I was discharged with flu medication.
Did I pick it up at work or somewhere else? We’ll never know. It knocked me for six and didn’t help my process of getting used to dialysis. For the next couple of weaks I was incredibly weak but luckily off work anyway.
Fistuala issues
So, after the effects of the flu finally subsided I got back to focusing on getting used to the dialysis. The nausea was still present at every session, but apart from a horrible experience with some anti-sickess medication it was something I could handle, and over time it started to subside. At the time of writing this (May 8th, 2020) it is alsmost unnoticable during most sessions.
The main issue has been my fistula. The upper half of it has had problems every time they’ve tried to use it. This has made it very difficult to ramp up my dose to the full amount I need. While this is continually getting better it’s still not perfect.
They’ve now created button holes (they use the same holes and blunt needles to hook me up) which is far more pleasant but I have never once it my dose target. Hopefully as they button holes and the fistula get stronger we’ll be able to fix that.
Progress
Generally speaking I’m feeling way better. I went back to work at the beginning of March and have been working full time since then with very few issues. I’ve been through lots of nausea, pain in my arm, and occasional extreme fatigue, but I’m still standing and I think I’m past the worst of it.
Next steps
Next up… transplant.
I’ve been submitted to the transplant list, and then coronavirus hit so I’m not sure how far it got. I believe I need a few tests before I’m officially listed but as I understand it they’re just formalities; I meet all of the criteria.
Last updated: 2020-05-08