Why I spent the holidays in hospital - Part 3

In part 1 I told you all about my 2022. In part 2 I covered the operation I’ve had and the crackingly good time it was. I’ll now cover my recovery experience so far.

Recovery (the longer one) starts

So I’m now back in my private room and I’m largely bed-bound; I knew I would be for the following 6 weeks. That’s not technically true since the only condition was that I couldn’t put weight through my right foot for 6 weeks but unless I wanted to risk having to slam my right foot down to stop me falling over it was best that I didn’t try to get around unless I had to.

I knew they wanted to turf me out as soon as possible—two weeks after the operation was the plan—but little did I know what was about to happen.

I settled into a nice routine of being woken up really early (between 4am and 7am) for observations, breakfast at 7:30am, lunch at midday, and dinner at 5pm. They really have a way of making you feel old because that naturally leads to you wanting to go to sleep as early as possible. Unfortunately the last obs of the day were usually at 9pm, sometimes 10pm, and I’m really not used to going to sleep before midnight.

Thankfully I was exhausted for the first week or so after the op and falling asleep was not a problem. It pretty much started happening after dinner (5pm if you recall) whether I wanted it to or not. That didn’t last and before long I was able to stay awake until after the last obs of the day which was much better than being woken up after less than 4 hours sleep. My body is used to only getting about 4-5 hours’ sleep a night so getting back to sleep after that did become a problem.

So many visitors

The last part of the operation had wrapped my foot in a back-only cast and a bundle of bandages; only my toes poked out. The plan was to wait a few days and then unwrap it to see what it looked like. When that happened everyone was happy with what they saw, despite how gnarly some of it looked to me. I took photos but don’t feel it’s right to post them here, but if you’d like to see me gimme a shout, but only if I know you. I will not be sharing them with strangers!

Following that reveal they re-dressed all of the wounds and shipped me down to the plaster room to have a new cast fitted.

Plastered, again

I have to take a moment to say that the nurses in the plaster room are some of the loveliest people I met during this whole experience. Don’t misunderstand me, everyone involved was generally very lovely but the plaster room nurses had something special, but I’m not sure what. This was good as I ended up seeing them every few days while I was still an inpatient. They changed the dressings and applied a new cast if necessary.

So, a new cast was applied to my foot and lower leg. I went with yellow as I felt I needed a bit of sunshine in my life at that time. This was December and it was pretty depressing outside.

The cast was applied to my foot and cut in two so the dressings were accessible. I was used to this as it was basically the same cast I’d been wearing since, I think, April, albeit a bit thinner as it didn’t need to take my weight.

Infected

As we closed in on the end of my first week post-op they discovered an infection. They immediately put me on general antibiotics and took blood to see what it would grow in the lab.

When they got results they changed my antibiotics. They actually changed several times over the coming couple of weeks, so as you’ve probably realised my stay in hospital was somewhat longer than the originally planned two weeks.

At one point they did a chest echo which found nothing to be concerned about, but then wanted to do a more invasive version where they stick a probe down your throat. I did hear what it was called several times but I can’t remember it. I can deal with quite a lot happening to me (see the previous post!), but the sensation of not being able to swallow has always been one of my lines for things to avoid at all costs, so I pushed back hard on this.

They wanted to do it to check my heart to see if the infection had spread. I had no symptoms that this had happened. No fever, no temerature higher than a barmy 38°C, and even that was for very brief periods. When the surgeon finally visited me I made him aware that they wanted to do this test and he quickly decided that I didn’t need it. He said he’d get it cancelled.

That didn’t stop them trying to schedule it one more time the next week, but I managed to get that one cancelled due to a scheduling clash. When I mentioned that at the surgeon’s next visit he told me he’d shut it down once and for all. It was apparently being triggered because my CRP (infection marker) had gone up a little in the latest blood tests, but not enough to justify such an invasive test. Did I mention that I really like the surgeon?!

Physi-ho-ho-ho

The timeline is getting a bit messed up, but please understand that the infection section above covers a lot more time than the overall account has so far reached. At this point we were rapidly approaching Christmas Day and I’d lost all hope of being home, or even closer to being home, before the 25th. I resigned myself to Christmas in hospital.

A few days before that I was visited by physio for the first time. At this point they were keen to get me a little bit mobile. They weren’t expecting much (see above comment on the danger of trying to move around too much) but they did want to make sure I didn’t spend all my time in bed. I think we’re probably all familiar with the things that can happen when we do that.

So the first order of business was to ensure I could get myself out of bed and into the chair with my leg propped up on a stool, topped with a couple of pillows for elevation and support. They wanted me to spend at least an hour every day in the chair.

I didn’t see any issues with doing that. The chair was very close to the bed and I was pretty sure I could put my left foot down and simply spin myself into the correct position. While the physio was still describing what he wanted I was flattening and lowering the bed and had plopped myself into the chair before he had finished his instructions. I like to be independent and this was a great way to prove to myself that I had retained at least some of that for the time being.

The second order of business was a little more complicated. I needed to be able to get to the bathroom, and I needed to be able to get around my flat when I got home. The former had already happened once but had involved a commode that got wheeled over the toilet. It had taken a few days post-op for the bowel-movement urge to return but at that point the physio hadn’t been so the commode was the only option. Awkward, but workable.

The first idea he had was crutches, and he had brought two of them along with him. I told him that was a non-starter. I have a fistula in my left arm for dialysis access and it’s strongly recommended that you don’t put more than 10kg of force through that arm. Half of me is, ahem, a little more than 10kg.

Idea two was a walker. I questioned whether that was a good idea since it would also involve putting half my weight through my left arm. Bear in mind that I wasn’t going to be using it as most people do, which is to say just using it for balance. I needed to hop on my left leg for each step I took and putting my entire weight down onto it in that motion was unavoidable. He resolved to go away, consult his team, and come up with an alternative.

I suggested the under-arm long crutches as that would put the weight through my shoulder instead. He wasn’t convinced but said he’d consider it with his team.

Walker, toilet ranger

I should note at this point that when I talk about needing the toilet I only mean number 2s as I don’t produce any urine on account of my complete kidney failure. That’s important beacuse it means my trips to the toilet are far less frequent than most people.

The next time I needed the toilet I thought long and hard for about 2 seconds about whether I could make the walker, kindly left in my room by the physio, work. I decided I should be able to use the walker in such a way that the bulk of my weight went through my right side, leaving my left as nothing more than a balancing force. That should be way less than 10kg.

So I tried it, and after some practice became quite proficient at getting around like that. I was confident I wasn’t putting much strain on my fistula, and I managed to get to the toilet all on my own. Result!

Despite the elderly feel of the thing, meaning it made me feel elderly, that feeling was quickly dispersed by the action of hopping along with it. I did briefly picture a frail elderly person doing that but other than giving me a small, respectful chuckle it did not linger.

So toilet trips were sorted, and along with them I decided getting around my flat would not be an issue. There was one outstanding issue which was being able to be next to the kitchen counter and the bathroom sink at home for at least a few minutes to prepare food and wash myself. The physio kindly provided a couple of stools which would do the job quite nicely.

Home chair advantage

My couch at home is very low. So low that I’m pretty sure there’s no way I could get myself out of it without using my right foot. I’m not even going to try as even a little damage could undo everything I’ve been through to get here.

The solution was to find a better chair online and ask my family or a friend to collect it, build it, and rearrange my flat to accommodate it in the best position possible. This was an easier sell than I was expecting, but I should have expected they’d want to help where they can.

I found a yellow (yes, yellow) wing chair on the Ikea website and sent my family the details. Next thing I know I’m receiving photos of it fully assembled in my rearranged living room. They’re really awesome!

I’ve now been home a little while and I can honestly say this thing has been perfect. It came with a footstool so I can have my leg elevated according to doctor’s orders, and it’s quite comfortable for long periods. I’m trying to force myself to move around periodically so I don’t spend all my time in one place (on physio’s orders), but it’s comforting to know I could if I needed to.

Long, regular day trips to my home town

The timeline is getting messy again, but no matter - back to when I was in hospital… As mentioned the most common reason so far for me to leave my room was to be taken down to the plaster room where they would de-cast me, remove the dressings, photograph the wounds, send them to the surgeon, re-dress them, and re-apply or re-make the cast as needed. But that’s not the entire picure.

I’m on dialysis. My prescription is 4 hours 15 minutes, 3 times a week. The hospital I was in for the operation did not have a dialysis unit so the plan had been to ship me a short distance to the nearest dailysis unit but unfortunately they had no spare capacity.

The solution was to ship me to my usual dialysis ward instead, which was 40-45 minutes away on a good day. It felt a little odd being so close to home but not going there (I live only a few minutes from my local hospital) but that was the best solution as far as those orgnising things could find.

So on a stretcher in the back of a patient transport ambulance I would go, have my session, and then be brought back in the same manner to my lovely private room. It took the whole day. For this temporary period I had been moved from the evening session (5pm-10pm) to the afternoon session (midday to 5pm). This was only possible because a very lovely person on the afternoon session was able to temporarily switch to the evening shift. I will be eternally grateful to that person.

This continued for the entire duration of my stay, and went pretty smoothly despite the occasional transport confusion. It also meant I was out of the hospital I was staying at for nearly the entire day which is the only reason the second time they tried to schedule the invasive heart scan was cancelled - they had tried to schedule it for 2pm on a dialysis day. Small mercies.

Christmas Day & NYE

Not much happened. Most of the hospital departments were shut down so there were no tests scheduled. Breakfast was served as normal, and lunch was a pretty standard carvery-style traditional Christmas dinner which was served at 11:30am. The evening meal was finger food from the local supermarket so I imagine the combination indicated that the kitchen staff got the afternoon off so they could have Christmas dinner with their families.

Despite the very early lunch and shocking quality of the finger food I would certainly not want to prevent that from happening. Other than that it was a fairly quiet day, aside from the somewhat deaf patient who had Christmas movies on full blast for most of the day. I was very glad I had managed to convince a family member to bring me my AirPod Pros by this point!

My lovely parents and one of my sisters visited me on Christmas Day and made it a bit special. I wasn’t in the greatest mood but we made the best of it. I should note here that my family have been great and visited me regularly to keep my stocked up with clean clothes and company.

Both sisters and my other sister’s kids visited the day after Boxing Day which was awesome. The older nephew (13) kept saying he wanted to live there, and it didn’t seem to matter how many times I told him they wake you up at all hours, poke and prod you for various tests, and the food is nothing to write home about. Apparently the fact they bring you food and drinks regularly was enough to make it appealing. My sister did point out that people bring him food at home so what’s the difference? That made him stop going on about it!

New Years Eve/Day were similarly quiet. More of the hospital was active but for me the day was uneventful. Lots of fireworks at midnight which kept me awake—there really was no point in staying awake for midnight all alone in my room—and they seemed to go on for a not-insignificant amount of time. I eventually got to sleep and another year had come and gone. Can’t say I was sad to see 2022 go away.

Logistics

We’re now getting close to my discharge and return home, which is where I’m typing this. For this next part you need to know that the hospital I was in is in a different trust to my local hospital. This had caused some issues when I was admitted, primarily that they didn’t have access to my complete medical records so I had to tell them about things like the drugs I take regularly.

It also meant that when it came to wanting to discharge me they needed to coordinate district nurse visits across trust lines. The course of antibiotics I was on needed to last another 6 weeks and it wasn’t something I could administer myself.

The process took about a week and a half which I basically spent trying to entertain myself, going to dialysis 3 times a week, and going to the plaster room roughly every other day. I was starting to get a little stir crazy.

I’m normally very good at entertaining myself, but the combination of pains in my foot, the exceedingly warm room, and the mononotony of it all was starting to get to me. My lovely sister bought me a “Grave Digger” Technic Lego set which interrupted the routine very well for a couple of mornings, and my mother bought me a puzzle book, but still the monotony continued. So much so that I started working on some pet projects on my laptop, including sorting out my hosting solution and my various blogs.

Logistics resolved

On a Sunday for some reason the nurse in charge came into my room and asked if I would be ok with going to dialysis from this hospital and then going home after my session. In other words, could they discharge me this Tuesday?

“Hell yes,” was the subtext of my answer. When it happened it happened very quickly. Drugs were organised, paperwork was completed by all the doctors involved, and a follow-up plan was devised.

The district nurse visits for antibiotics had been arranged, and had now been joined by separate visits to change the dressings on my wounds, replace the PIC line dressing, and take some blood. The antibiotics were due every 72 hours, and needed to occur outside my dialysis sessions for the few days they’d otherwise clash. This essentially meant doing them late into the evening to make sure I was back home before they arrived. So far I’ve had two and they’ve been ~7:30pm and 8pm. These will continue until February 8th.

Changing the dressings and taking the blood will be happening weekly on Mondays, so the first one will be tomorrow. I don’t currently know what time they’re going to arrive but it’s not important as I have nothing else scheduled for Mondays.

Follow-up trips back to the hospital

I addition to the district nurse visits I’m also expecting an appointment every two weeks to go back to see the surgeon so he can check on my progress. At the end of January that will involve an x-ray and they’ll then decide whether I can start weight-bearing or not. It’s likely it will need a little longer to cook based on my poor circulation but we won’t know until we get there.

Beyond that I don’t currently know what the remainder of my recovery will entail.

Please don’t leave yet, I’m coming…

Like a good little boy I started with using the walker to get around my flat. As mentioned I have a stool in my kitchen and another in my bathroom. Both are roughly equal distance from the new wing chair and my bed, so I’m pretty much set up for minimal travel. The one exception is when someone buzzes my flat from the outside world.

The entryphone system, as in most apartment buildings, is next to the front door. I can’t currently get to that system before it times out and drops the connection. No problem, I think I hear you say, with most of these systems you can initiate the connection from the phone. While that’s true there are two entrances to my part of the building and the connection is made with the one that hardly anyone uses. You literally have to walk past the first entrance to get to the second.

If I’m expecting someone I can tell them to call me ahead of time, or to ring the buzzer again about a minute after they do it the first time and that solves the problem. If I’m not expecting anyone I scramble to get there in time and have so far missed one. Thankfully they rang again shortly after I did get there.

I even managed to convince a DPD driver to bring a parcel up to me rather than leaving it next to my post box. There’s no way it would have still been there by the time I was able to get to it!

Office chairs make good temporary wheelchairs

The first district nurses to call followed the instructions well and gave me an ETA so I could make sure I was in position, or at least on the way. Unfortunately they were quite late which left me standing on one leg with the walker waiting for them; not a very comfortable position.

From where I was I could not see my office chair but after a few minutes it occurred to me that this was closer to the front door and I could probably sit in it while waiting. So I did, and it slowly dawned on me (yes, it really was slow) that this thing is on wheels. Surely pulling myself along with my left foot on these wheels would be far safer and easier than the walker.

So that’s what I do now. I’m no longer using the stool that was in my kitchen, but I am using the one in the bathroom. I don’t want the office chair to get wet. And I’m generally finding I’m getting around much better, and having next to no instances of needing to apply even slight pressure with my right foot to keep my balance.

I am a little worried about the wheels on the chair but so far they’re showing no signs of damage. It does look a little funny when people visit me but a quick explanation is usually enough for them to accept that it makes sense.

But wheelchairs are better

I’m now looking at hiring a wheelchair for the 2+ weeks I have left before I can start weight-bearing. This will have several advantages. First it will be a much safer vehicle for getting around than the office chair, and damage to the wheels will no longer be a major concern.

It will come with a leg support so can spend more time in it instead of the wing chair.

Finally it will allow me to switch back to the evening session at dialysis because I will no longer need a stretcher on the ambulance. This will effectively give me 3 full days a week back as it’s a lot easier to be out for entire evenings than for entire days.

I’ll need to check with the district nurses to make sure they can shift my time slot to earlier in the day, but I expect that won’t be a problem as they’re more likely to have more people working during the day than late into the evening.

It also opens up the potential for me to get outside occasionally, potentially on my own, but I’m somewhat nervous about that. We’ll see how well I get on with it.

The Occupational Therapist who came to see me as part of the discharge process recommended a company called WheelFreedom (love it!) and I plan to give them a call tomorrow to see if they can accommodate my hire. I think I know what I need and what it will cost but I need to check with them. They will deliver next day and the hire is open ended with a 2-week minimum.

If I start the hire tomorrow that should cover the last amount of time I will need it, and allow the anticipated extended time I’ll probably need to keep it around.

You’re now up to date

That brings you bang up to date. Today is Sunday, January 16th so in theory I have around 2 weeks until the crunch point of x-ray and weight-bearing potential. I’m not working at the moment and don’t think I’m very likely to return to work until I am weight-bearing again. I’ve found general day-to-day activities to be quite tiring and the prospect of trying to put in full days of work at the same time really doesn’t appeal, and I don’t think it would benefit my recovery or the company much if I try to push too hard too quickly.

District nurse visits so far have been smooth and professional - a great service and testament to the flexibility the NHS gives us. I’m managing to cook for myself, but really only sandwiches, pre-made soups, and ready meals. Aiming to have a crack at boiling some eggs sometime next week - big step!

My lovely parents are food shopping for me, keeping me well-stocked. Since I’ve switched to the office chair I’m finding cooking, loading and unloading the dishwasher, and other day-to-day activities far easier, but I’m nowhere near fully self-sufficient yet.

My family continue to visit me regularly and I’ve had a couple of friends come round to keep me company. Generally speaking life is as good as it can be, and I have high hopes that it can only get better from here and will eventually return to some form of normality.

I’m sure I’ll follow up with a part 4 when the next episode unfolds and I start walking again.

Here’s to 2023 featuring far more mobility and indepedence than 2022 did. Thanks for reading. If you’d like to comment or ask me questions about this experience please feel free to hit me up on Twitter or email.