There and back (home) again

So on Wednesday I went back into hospital to be added onto the end of my consultants afternoon surgical list. Personally I always used to prefer surgery in the morning, as it gives you less time to hang around worrying on an empty stomach, but I’ve now reached that point where I don’t really worry about surgery any more, and I need to lose a few Kg, so the afternoon worked just fine. I got into hospital around 2pm, and saw my consultant and a new anesthetist, and then waited for my turn to be wheeled down to theatre, which happened around 5pm.

A few minutes to be cannulated (these anesthetists are masters at fitting a cannula), then the usual dance with fentanol and propofol, and apparently only moments later I was in the recovery suite.

The procedure apparently went really well, with my consultant irrigating the wound cavity and using suction to ensure that it was completely empty, prior to installing a corrugated drain. This is (as it sounds) a corrugated piece of plastic that is sewn into the wound tract to ensure that the wound remains open, and directs any discharge down the corrugations in the plastic where it can flow out of the body. Apparently these are extremely effective, but the problem is that there is no way to attach any kind of collection container, so I’ve got to wear disposable pads etc to collect any discharge. Since it’s in the wound where my anus used to be, it makes sitting down somewhat uncomfortable too. All in all, not terribly pleasant from my perspective, but hopefully something that I won’t have to put up with for very long.

I was put back on broad spectrum antibiotics again, though interestingly my pain relief was allowed to continue to reduce, dropping my Ibuprofen from the mix. Fundamentally I’m now on only a maximum dose of paracetamol (1000mg four times a day) only a fortnight after major surgery, though I do have access to some tramadol if I really need it. I find it amazing that the drug you see many people taking for colds and headaches is exactly the same as I’m taking to cope with major surgery.

Because of the timing of the procedure, I was then kept in hospital overnight. This turned out to be convenient, because on Thursday morning I was due to have a (non-voiding) cystogram in the hospital anyway, so I was just wheeled down from my ward, rather than having to trek in from home. In my case the test was essentially a “pressure test” of my bladder, to ensure that there were no leaks where they had re-implanted my left ureter. If there were any signs of a leak then I would need to remain catheterised for another couple of weeks to allow more healing to take place, which would have been a real pain – literally. Those things are not nice long term.

Fortunately, the cystogram showed no signs of any problems (big thanks to my urologist, who obviously did a fine job of sewing the ureter in place) so I was given the go-ahead to have my catheter removed. My consultant also ordered the removal of all my surgical staples (or “clips”) from my major wound tracts too.

Removing the staples sounds horrendous, but is actually almost completely painless. Removing the catheter was not. After 2 weeks in place it was not easy to remove, but there is nothing to be done apart from letting the nurse just pull it out. Breath-taking doesn’t really do the experience justice. Jolly painful is nearer the mark. But having said that, it was getting extremely uncomfortable anyway, so a few minutes pain to be free of thing is a good compromise – especially in retrospect!

And with that, I was considered good to go, subject to being able to pass water normally again. The reason for this is that there are selection of “interesting” problems that can arise after being catheterised, so the hospital are not keen to let anyone out without having demonstrated basic functionality. The trouble with this is that you’re (obviously) starting from nothing, so I had to spend much of the afternoon drinking tea and water just to be able to pass the exit criteria. You’d laugh if it weren’t actually quite serious!

So in the end, I was discharged early on Thursday evening with another bag of medicine and dressings. Home again!

.דער מענטש טראַכט און גאָט לאַכט

So yesterday morning the alarms (yes, several – I didn’t want to be late) all went off at 5:30am, and we commenced the day with military precision. I dashed downstairs to have my last couple of glasses of water before the nil by mouth regime cut in at 6am, more in the hope of giving the anaesthetist a fighting chance of finding a vein than for any real sense of thirst. Back upstairs to dash through the bathroom, and then the last minute packing of my hospital bag, before heading out into the traffic at 6:30am.

We did well, negotiating the motorway traffic and early morning rush into Portsmouth without too many problems. When I’m travelling at those times, it always surprises me how busy the roads are between about 5:30 and 6:30; almost a precursor to the main rush hour between 7:30 and 8:30. I must admit I wasn’t paying much attention yesterday though.

We arrived at the hospital with about 5 minutes to spare, so I walked up to the ward to check in while “L” parked the car. It was strange going back into the ward where I spent nearly 5 weeks last year. Nothing had really changed, including the staff, who had seen my name on the admission sheet and were looking out for me. It’s strange (and probably on some level, just plain wrong) to be greeted on sight, by name, in those circumstances. But it’s also hugely reassuring to realise that the people there know me and care.

We were ushered off to a consultation room where my enormous folder of notes made an appearance, along with the duty nurse, and we went though the admission paperwork. I was issued with a set of hospital-standard surgical stockings, and the dreaded hospital gown. Then the nursing staff changed over to the day staff, most of whom I also knew from my previous visits, which was really nice – there was a steady flow of visitors popping into the room just to say hello and wish me well, which helped to distract me from thinking about the operation to come.

The anaesthetist stopped by to see me at about 8:30am, and went through my personal history again, and then looked back through the notes from the previous anaesthetists who had looked after me. I really liked him – a cheerful chap, who also managed to be completely no-nonsense and focused at the same time. Just as well really – you want the guy keeping you asleep but alive during a long operation to be on the ball!

Then shortly after he left, my new Urologist dropped by to talk to me. We’d not met before, so the dynamic was interesting; feeling for a mutual level to talk at, while also going through the social thing, and getting the job done in terms of explaining what he needed to. Again, I came away from the conversation very reassured that I was in good hands. His problem is that they don’t really know why my kidney isn’t working properly, and what he would have to do to help me would depend very much on what he found when they got me open. As he rather wryly pointed out, my surgeon had consented me for practically every urological possibility that might arise.

And then we waited for my main consultant to drop by. And waited. And time passed. An hour. More.

Oddly, I remember thinking I wonder what happens if my consultant has been taken ill? Killed in a car crash on the way to work? And then looking at the time again (10:30am) and thinking that something clearly had to have gone wrong for an operation that was scheduled to start at 8:30am to not be under way yet. And as though my thinking that thought prompted the reaction, my consultant arrived and explained that he had had to cancel my operation.

The problem was that due to the scale of my operation, the surgeons wanted me to spend the first two nights and days after the operation in intensive care (now apparently called ITU, or Intensive Therapy Unit) where I can be constantly monitored. And there were no ITU beds available for me to go into yesterday. While we had been waiting around for the operation to start, the surgical team had been trying to find a way to get me an ITU bed (and had failed), or to go ahead without the need for the ITU stay (and had decided it was not safe to do so). Which finally only left them with the option to reschedule me to another date.

You might ask why (since this is being funded privately) hadn’t the ITU bed been booked in advance? The answer is that ITU beds are stupendously expensive, and are always in limited supply. They are a resource that is so precious that clinical need always overrides everything else. As I understand it, there is a booking list for ITU beds for elective patients, but true emergencies (bad car crash, for example) always come first. So, before an elective operation starts, they make sure there is going to be enough space for the patient in ITU at the end. If there isn’t then the operation doesn’t start. And that’s what happened to me.

In the grand scheme of things, this makes sense. If it was me (or one of my kids) in the road accident, then that’s exactly what I’d expect to happen. But it does feel a bit frustrating at the time. And my consultant was obviously frustrated too, as it meant that the team he’d assembled to operate on me all day were now all running around trying to rearrange their surgical lists to pull other patients into the space that I’d just vacated.

And the title of this post? You don’t speak Yiddish? Me either – but apparently it’s a Yiddish proverb that roughly translates as “Man plans and God laughs”. So true.

Here we go again

I spent Thursday morning back in hospital for all my pre-admission checks. It all started with lots of questions about my previous medical history. This was rather amusing, as the nice nurse who was running the session had all my notes with her, but had obviously decided that it would be easier to ask me what I’d had done to me and when, rather than trying to tackle my folder, which is now some four or five inches thick.

It was a good plan. But I’m now at that stage where I can only remember the key events; the rest is a bit of a blur of procedures, anaesthetics, hospital visits and hospital stays. In the end we settled for me outlining the major items, and she agreed to look up any details that she needed later.

I aced the ECG test again, but was a bit depressed at how much weight I’ve put back on while I’ve been struggling with my current temporary ileostomy, and not able to exercise. It’s going to be a major personal goal to start getting that back off again while I am recovering from this operation, and then continue to improve my general level of fitness afterwards. Sadly, about 50% of colostomy patients end up with hernias, and I figure a good way to make sure I don’t end up part of that statistic is to build up a good level of general physical fitness.

As usual, they wanted a selection of samples from me; swabs from nose and groin to check for MSRA were easy, as was the urine sample. The three vials of blood I expected to be a real issue, but it turned out to be surprisingly easy; it seems that the veins in the crook of my elbow are still in good working order.

And with that, I am declared healthy enough to be operated on. I have to admit myself on Wednesday morning before 7am. I must not eat anything after midnight of the night before, and can only drink water from then until 6am, after which it’s nil by mouth until after the operation. I guess it’s one way to start the diet.

Medical costs

One of the things that we all are exposed to is the ever rising cost of medical treatments. Whether that’s through the NHS, which we all fund through taxation here in the UK, or private health insurance, funded either privately or by nature of our employment, the escalation in the cost of providing care to us hits us all in the pocket eventually.

This has been brought home to me by observing the disposable culture in the hospital I’m currently staying in. The amount of stuff that gets used once and thrown away, rather than reused (or recycled) is amazing.

Now, to be fair I do understand that when dealing with body fluids, especially ones that are potentially infected with unpleasant diseases, the normal routes for reuse and recycling may well be closed off. And there are a large number of situations where the safety of the patient is going to come before concerns about the environment or the cost. But at the same time, I can also see that there is a huge opportunity for reuse too.

I guess what crystallised this for me was an accident that I had with my endsponge drainage system today. I was sitting on the bed, and went to stand up, only to discover that I was standing on the catheter that runs from the sponges to the vacuum flask. The primary result was that the catheter was pulled loose from the sponges at a conveniently (and probably carefully) situated “Y” join, preventing the endosponges being dragged from my body. For which I am eternally grateful. But the secondary result was that the vacuum flask immediately devacuumed, leaving me with no way to run the endosponges.

In the end it took 2 hours to get a replacement unit from the operating theatres to replace it. We got several *other* vacuum drainage flasks before that. But none of them were compatible with the Endosponges. And the devacuumed flask is not refillable, despite there being plumbed-in vacuum lines in every room in the hospital.

Worse, they don’t even appear to be recycleable, despite appearing to be made from extremely sturdy polycarbonate, which ought to easily withstand being medically autoclaved.

As an outsider looking in, I do wonder just how much money could be saved by standardising on a small selection of vacuum flasks covering a range of pressures, with standard fittings that can be attached to anything that needs a vacuum source to operate, that can be topped up from the hospital vacuum system whilst in use, and that can eventually be emptied and medically autoclaved, before being locally evacuated with fresh vacuum locally, at least some minimal number of times before eventual complete disposal.

My treatment will eat through at least 20-odd of these flasks; even halving the cost of that (I’m assuming that as with all medical devices, these things won’t be cheap!) starts to look quite attractive.

Great news!

Nick, the chap in the bed next to me at the NHS hospital who I struck up a friendship with has just sent me a text message to tell me that completely out of the blue he is to be released home tomorrow. Which is really good news indeed, as like me, he was going slightly stir-crazy.

We’ve arranged that I’ll give him a call early next week with a view to me popping around to see him for a coffee and a chat. He’s promised me a run in his Ford Mustang when he’s well enough to drive again, but I suspect for now we’re going to have to settle for more mundane pastimes. If nothing else it will be nice just to see him back in his own home rather than in hospital.

Monday revisited

As predicted, Monday was a busy day and I managed to tick off some achievements, which felt really good. However, I seem to have been so busy (it’s all relative remember!) that I’ve not managed to post anything here for the last couple of days, so I thought I’d recap on what’s been going on.

I managed to successfully walk my youngest daughter to school on Monday morning; according to Google maps, it’s 0.9miles following the route I took, and to be brutally honest, that was pretty near to my limit for an uninterrupted walk. For once I was absolutely delighted every time my daughter stopped to look at an interesting leaf, pretty flower, unusual bird, etc, as each diversion gave me a few seconds to catch my breath! And then having got to school not only was was it great to catch up with some of the other parents in the playground, but that also gave me a good 10 minutes rest before I started walking back home. Interestingly, the journey home was much easier than the journey to the school, perhaps because I was setting a slower pace than my daughter, and perhaps because the outward walk had already loosened up my muscles and joints a little. However, by the time I’d got home I was completely exhausted, and ended up going back to sleep. Plus ça change, plus c’est la même chose … 🙂

The stoma-care nurse called in to see me later in the afternoon, and we went through the whole check-up game, making sure that I was managing OK. She was also very helpful in setting up what amounts to a “standing-order” prescription for all the supplies that I need (custom-fitted ileostomy bags, adhesives, adhesive removers, skin-protector wipes etc) that will then be automatically delivered by courier over the next few months until I can get the ileostomy reversed.

And finally I drove down to Portsmouth and went back into hospital to visit one of the other patients who is still recovering from his treatments, who I’ve struck up a good friendship with. I took some beers in (to my surprise, the hospital don’t ban alcohol), and we ordered takeaway pizza from the local Dominos, which turned up at the front entrance in only about 10 minutes. Which made for a much more palatable evening meal than what would have been provided by the hospital!

It was very noticeable that having not seen him for some 10 days or so, he was looking much better. He’d put on some weight and built up some muscle tone, had much better colour, and generally looked much more healthy. He was also much more mobile and able to move more freely without assistance, which shows that he too is making good progress towards the day when the consultants will be able to send him home.

Sadly however, another patient that I recognised from my time in hospital had been readmitted yet again. He seems to be really struggling to get out and stay out of hospital. His first return was brought on by dehydration, but this time it transpires that he’s got a series of blood clots which have migrated to his lungs, so he’s now on a series of blood-thinning medication and close observation to ensure that the clots dissipate. Fingers crossed that the hospital can get him stable and back home again soon, and that (selfishly) I don’t run into such a series of problems.

Home sweet home

The results from my blood tests were fine, and so I was officially discharged from hospital shortly after 1pm. My wife and daughters came to pick me up, and after some emotional goodbyes to the nurses and doctors who’ve been looking after me so carefully, we headed for the car park, where I received my first shock.

I may have felt like I was ready to take on the world, but in practice, I struggled to walk as far as our car. By the time I’d got there (perhaps four or five hundred meters) I was exhausted. It was as much as I could do to climb in and do up the seatbelt. Euphoria took over again as we drove home, especially once we got off the motorway and I was able to wind the window down and feel the fresh air on my face.

But once home it was as much as I could do to take a quick turn around the house before I had to go and lie down. Where I promptly fell asleep for most of the afternoon. So the reality of the situation is clear – my consultant was most definitely not exaggerating when he told me it was going to take me a good 3 months from the date of my operation to recuperate.

But at least I can do so with my family around me, which feels wonderful.

Escape, the sequel

It appears that I’m finally (after 20 nights in hospital) going to be discharged today.

However, there is a continuing concern that my stoma output is still rather high, which could result in problems with hydration and with loss of electrolytes (specifically sodium and potassium) from my bloodstream. To mitigate these concerns they’re going to run one last blood test on me to check my current electrolyte levels before discharging me. That will hopefully take no more than 4 or 5 hours, which should allow me to be home in time for tea.

Once discharged it will be down to me to manage my own electrolyte and hydration levels; this seems to largely revolve around drinking a minimum of 2.5 litres of water per day, and bolstering my electrolyte levels by adding salt to my diet. I’m also advised to avoid any high fibre foods, and instead to adopt a “low residue” diet. Taken together this means my diet is likely to be completely counter to all the standard advice for a normal healthy diet.

Still, freedom appears to be no more than a few hours and a blood-test away. Hooray!

Update: I just had my bloods drawn at 10am

Escape?

I saw my consultant again this morning, and it’s looking like I may, possibly, be allowed to go home on Tuesday.

As with all these things, it’s not a simple decision though, as it will depend on my coming off the octreotide injections, and maintaining an adequately low stoma output. If that doesn’t happen then there is a possibility of them teaching me how to give myself the injections, though I would imagine that that would require a little more time before my release. Alternatively they may decide to keep me in hospital a little longer to see if the stoma output continues to drop naturally to a point where I can then manage it myself at home.

As a first step in this process my octreotide injections have been cancelled from now onwards, and we’ll monitor what effect that has on me. Here’s hoping it’s minimal.

I was also given a strong hint that I’d be well advised to get off the codine as soon as possible too, as it’s both an addictive narcotic, and has sedative qualities that reduce your ability to operate machinery and drive. Since that’s also currently helping to keep my stoma output in check, I can see that I’ll have some interesting challenges ahead of me 🙂

Unstapled

For the last couple of days I’ve noticed that I’ve been experiencing some discomfort while sitting down, standing up, or stretching. I’d assumed initially that this was simply that I’m now on a much lower dose of pain-killer than before. However, this morning the pain was much worse, which got me thinking.

And then I remembered that the staples used to close my wound were supposed to be removed after about 10 days. And I’m now at day 15, and still have them in place. Some careful experimentation revealed that the majority of the pain seemed to be centred on the lower part of my wound where the skin folds below the tummy, placing more stress on the staples supporting the wound.

A quick check by the nurses revealed that the staples were long overdue to be removed, and were actually now doing more harm than good, causing irritation but no longer actually supporting the healing of the wound. And 15 minutes later I was unstapled. Which was a surprisingly painless experience, apart from a couple of staples that were positioned rather awkwardly, making it difficult for the nurse to get her pliers to them.

And the result? No more pain. Though from what I can now see, I’m going to have a spectacularly large scar to show for all this 🙂