Why I spent the holidays in hospital - Part 1

I was discharged from hospital yesterday (January 11th, 2023); I’ve been there since December 14th. This was the end of a challenging year because since February I’ve been wearing an orthopaedic boot or cast on my right foot and lower leg, with instructions to stay off it as much as possible. I’m now in the middle of at least a six-week recovery process after which I will hopefully be able to walk relatively normally again.

Charcot foot

Charcot foot is a condition that primarily affects diabetic patients but can occur in anyone with peripheral neuropathy in their feet. I have barely any feeling left in either foot, but nobody ever told me about this particular condition.

In October and November last year I spent two separate periods of 8 nights each in hospital with pneumonia. I had noticed some swelling in my right ankle and had pointed this out to a couple of dialysis nurses. They dismissed it as fluid retention. I disagreed with that diagnoses and told them so. Gravity works on both legs at the same time but my left ankle looked normal so it didn’t make sense to me, but they still dismissed it.

When I got to the end of my second stay for pneumonia I finally managed to convince one of the renal doctors to have my ankle x-rayed. It seems renal doctors are also generally unfamiliar with the condition!

The x-ray came back on the day I was being discharged and the renal doctor, while acknowledging that he’s not an expert at reading them, said he couldn’t see anything wrong. At that point I really didn’t know how to push for further investigation so I just left it.

About a week later I got a call from the x-ray department saying they wanted me to come in for some more x-rays at different angles. It seems the original set had been reviewed by someone who did know how to read them and they’d spotted something that suggested a fracture. I went in and had those done but unfortunately they’re not allowed to tell you anything at the time because the x-ray techs are also not trained to accurately read them.

Fast-forward to a few days before Christmas and I get a call from the MRI department. Someone, somewhere, had referred me for a contrast MRI on my foot. The person calling me was just responsible for booking them so couldn’t tell me anything. An appointment was made for New Years Eve, which came and went in a similar manner to the x-rays.

In early January I got a letter telling me I had an appointment the following week with podiatry. This was out of the blue but it wasn’t hard to connect the dots. There was something wrong with my foot, and it definitely wasn’t fluid retention!

At the podiatry appointment I learned a bit about Charcot foot, which they had positively diagnosed as the cause of the swelling. Bones in the foot become extremely fragile and malleable for a period of time. This usually lasts around 3-4 months and effectively recovers on its own. In the meantime the only thing they can do is attempt to keep the foot foot-shaped and in one piece; there is no treatment for the condition.

Booted

I was given a large black orthopaedic boot to wear which you pumped air into so it literally hugs your foot. This is intended to hold the foot in place and limit its ability to change shape while still allowing you to walk somewhat normally. In fact they encouraged me to walk on it as apparently keeping off it entirely can make the condition worse in the early stages.

This was ok. Yes, it looks ridiculous, and it takes a little getting used to, but if it stopped my foot getting mangled I could definitely cope with that. I had to stop driving so arranged patient transport to get me to and from dialysis and otherwise became a proper hermit in my flat, much like I was when we were locked down for covid-19.

I had another appointment with podiatry 4 weeks later, and that was preceded by another x-ray. In that time I’d noticed that my foot could still move a significant amount in the boot despite pumping it up as far as it would go. This is likely because my legs are large but my feet are small, meaning I had to have the large boot and I think my size 8.5 foot was swimming in a lot of air in the bottom of it.

Plastered

The solution was to send me to have a full-contact cast fitted, but it had to be removable because fluid retention between dialysis sessions makes my legs expand, and the session itself makes them contract back again. Much like train rails in hot weather I needed the ability to expand.

This was no problem. It’s not an uncommon request to the plaster room so it was a simple process to get the cast applied. When they called it full-contact they weren’t kidding. It went up to just below my knee and covered my toes. And they gave me a lovely cup of tea while it cured. The NHS wouldn’t function without an ample supply of tea.

My foot no longer felt like I could move it at all, so the goal was achieved. It was a little more difficult to walk on as the shoe they gave me (more like a flip-flop really) kept slipping off due to the shape of the heel, but that was only an issue when I went outside which was to and from dialysis only at that time.

Unfortunately at around this time the lift in my apartment building broke down, which meant going to and from dialysis involved walking down and then up two flights of stairs. That was often painful and couldn’t have been good for my foot. It wasn’t fixed for several months and certainly made my condition worse!

Crutched

A few appointments and x-rays later it was April. Long after April Fools Day they told me something had changed. My talus (ankle bone) was starting to show signs of deforming. They wanted me to use crutches and to stop walking on it entirely. That’s very difficult for me.

I have a fistula for dialysis access in my left arm, and a major instruction that comes with that is to not put more than 10kg of weight through that arm. Half of me is significantly more than that so using two crutches was out of the question. We ended up agreeing that I could use a single crutch in my right hand and put it down with my right foot, pushing as much of the weight as possible through the crutch instead of my foot.

So that’s what I did. It took a lot of concentration but I got the hang of it pretty quickly. No doubt it wasn’t ideal and would probably cause more problems for my foot than some of the other options they gave me, but we all agreed that one crutch should be enough combined with not walking any more than I needed to, and having patient transport take me from the ambulance to the dialysis ward in a wheelchair would accomplish that.

Crumbling

Despite all of my efforts to keep weight off it I started to hear cracks in my right foot as I was walking with the crutch. I called the podiatry department and told them about this and was essentially told that nothing can be done to stop that. Whatever was going on in there was going to happen whether we wanted it to or not.

Further x-rays at the next appointment showed that my talus was indeed crumbling away. It was clearly bad as they decided I no longer needed to get x-rays before each appointment. That’s when you know they can’t do anything about what’s happening in there.

Crumbled

At some point, and I can’t remember exactly when, the cracking stopped. It was several months later, and way beyond the 3-4 months I had been told to expect this to last, and it still wasn’t done. When the cracking stopped I requested that they take another x-ray so I was aware of exactly what had happened.

My tibia was now sitting directly on top of my heel. It hurt to put any pressure through it, and I was told that’s because the heel is not meant to take that much weight as it’s usually distributed through the rest of the foot by the talus. In addition, because my foot was now not actually connected to my leg with anything other than flesh, my foot had twisted to the left and I was now pushing down on it at about a 30 degree angle.

Additionally my right leg was now visibly shorter than my left by a few centimetres. This started to give me shoulder pain in combination with walking on the crutch. If nothing else this encouraged me to avoid walking!

Two degrees of separation

We were now waiting for the acute phase of the Charcot to end. The check for this is to measure the temperature of each foot. They had been checking this from the start where it was just over 6°C. At this time it was around 4°C and falling slowly. When it hit 2°C they said we can start looking at options.

I’m going to jump ahead a bit to November when that target was reached, so depending on when the Charcot actually started (very difficult to pinpoint) it was probably about 11-12 months in total rather than the expected 3-4 months.

In the meantime the podiatry consultant referred me to an orthopaedic surgeon who specialises in reconstructing severe Charcot foot cases. He was based at a hospital that was 40-45 minutes’ drive away.

Three options

At my first appointment with him he took more x-rays and examined my foot closely, manipulating it in ways I didn’t think were possible. I wasn’t sure if that was a good sign or not, but in retrospect I think it was.

He laid out three options:

1. Continue with a cast and the crutch.
2. Reconstructive surgery to stabilise the foot again and make it usable, but it wouldn’t restore ankle movement as that was gone for good. Instead it would fuse the foot to become fixed in place.
3. Below knee amputation.

Option 1 was quickly discarded since my tibia would continue driving into my heel, causing me pain and eventually requiring some further action anyway.

Option 2 was involved. It would be a 3-4 hour operation followed by at least 6 weeks of no weight-bearing while it healed.

Option 3 was the most drastic but had a very quick recovery, and the current generation of prosthetics are very good. I came away from that appointment with a lot of anxiety and confusion.

And sadness. Why did this happen? Could I have done anything to prevent it? Could I wake up now, please?!

I’ve always been pretty good at dealing with what’s happening to me right now, but dealing with something I know is going to happen at some point in the future is where I really struggle. It was the same leading up to my first dialysis session, but I know that once I get there I’ll be fine. In the meantime I tend to have trouble sleeping, can be quite grumpy, and my depression spikes.

Decision

Over the following weeks and one more appointment with that surgeon’s department I settled on option 2. It made the most sense to me after I had all of my questions answered.

The main question I had was how permanent is it? Would it last for a few years but eventually result in amputation anyway? In which case I probably would have opted to have it amputated now, but I was assured it’s permanent short of complications or damage.

Surprise

My next appointment with the surgeon was on December 8th. Between this and the last appointment I had another contrast MRI and this was results day. That test was basically a yes or no to me having the reconstruction as they needed to check that my circulation could adequately support the healing process. Limb circulation is a huge problem for diabetics and it gets worse as neuropathy sets in.

I’d been on the bed for barely 5 minutes when he turned around and said, “what are you doing next Wednesday?”

“Err, nothing but work, why?”

“If you’re up for it I have an opening - we can do the surgery then.”

After taking a few deep breaths I said, “sure, sounds good.”

Apparently he was due to perform surgery on someone who had become too ill for it, and I was the lucky sod who got bumped up. After having a while to reflect on it I’ve decided it was a very good way for things to go. Minimal time between knowing when it was going to happen and it actually happening meant minimal anxiety time. It was also great to get it out of the way. Finally, Christmas is the right time to need significant time off work, even with such short notice.

Operation

So I was now due in the hospital at 7am on December 14th, but this post is becoming very long so I’ll cover the operation and recovery so far in the next one. Suffice to say for now that the operation was a success, and so far the recovery has gone pretty smoothly.