A lot has happened this week and unfortunately I’m writing this blog post from a hospital bed. I know- I can hardly believe that I’m back in again. This is my 5th admission in as many months and Ward F22 at QMC hospital is starting to feel like a second home! So what happened this week and why am I in hospital?
On Wednesday I had a flexible sigmoidoscopy which is basically a lot like a colonoscopy but without going quite so far into the bowels. This was the first one I had in Nottingham and they do things a little differently to St Marks. I did have the exact same procedure done at St Marks a few days before Christmas last year but there were some problems meaning that they couldn’t see what they needed to. Firstly because I was in so much pain with my bowels they couldn’t give me the enema needed to wash out my J-pouch and small bowel and then they couldn’t cannulate me which meant I couldn’t be sedated. Because of the pain they could only get the scope in a few centimetres and couldn’t see much. And believe it or not when you have tests done in different health trusts the information isn’t uploaded to some big NHS cloud that all your doctors have access to. So if the doctors in Nottingham wanted to see test results from St Marks (or vice versa) they have to email the consultant and ask for them to be sent over. You would think that in this day and age there would be a better way of doing it but maybe there’s a legitimate reason why they don’t do it known to cleverer folk than me!
Anyway, I digress. Instead of having an enema in the clinic on the day of the procedure in Nottingham they send out a bowel prep designed to ‘clear you out‘. I wasn’t looking forward to this as I already spend so much of my life sat on the toilet and taking medicine to send my bowels into overdrive didn’t seem like a very fun thing to do! I had to drink a 1litre solution at 8pm the night before and then drink another litre 5 hours before the procedure which meant I had to get up up at 5am! The worst thing was that I had spent most of the night going to and from the loo and had only just nodded off when my alarm went off.
Once at the clinic I was booked in and because I wanted to be sedated they tried to cannulate me. Unsuccessfully. As usual. After a few tries the Consulant sent a message to the nurse saying my veins were awful and asking me to have gas and air instead. (The reason he knew about my veins is that he’s the Gastro consultant from the ward so he knows me from all my recent stays.) I pulled on my big girl pants and agreed to the gas and air approach (or I would have done if I had been allowed to wear knickers under the hospital gown 😉) I figured that if I can give birth to an 8lb plus baby with just gas and air then I could cope with a camera going up the other hole! To be honest the procedure lasted less than 10 minutes and although it was painful when the scope was inserted after that it wasn’t too bad, just a bit uncomfortable.
When I got home I took myself to bed and ended up sleeping for most of the day, making up for the lost hours the night before. It also happened to be Mum’s birthday so once home schooling finished for the day Big girl baked her a birthday cake and we popped up to see her and stood on the doorstep singing Happy Birthday (with masks on and obviously from a distance of 2m). Later I hooked up my fluids to my Hickman line as I do every night and got back into bed. But after 20 minutes I realised that my pyjama top was wet so paused the feed while I investigated. I thought perhaps I hadn’t connected properly and it was leaking but that wasn’t the case so I started the feed again only to see drips coming from under the dressing. When I took the dressing off I could see that there was a small hole in my line and that was the source of the drips.
Now a small hole in the line doesn’t sound like a big deal- just a minor inconvenience right? Wrong. Because Hickman lines sit in a vein that go directly into the heart if there is a hole that means that bugs and air can get in. Bugs cause infections that can lead to sepsis and if air gets into the line, it can lead to an air embolism and that can be deadly. So a tiny hole becomes a big problem. I dug out the emergency clamp that we are supposed to carry with us at all times in case of emergencies like this and clamped the line above the hole to stop any bugs or air from getting in.
Because the feed had only been going for 20 minutes chances are I should be ok but if I had fallen asleep and it had been hours before I noticed then it could have been a different story. I then had to disconnect the feed, cover the line with a new dressing and decide whether to go straight to hospital or wait until the morning.
Because this isn’t the first time I’ve had a split in the line I knew that I would probably be ok to wait until the morning. That way I could contact the ward and hopefully get admitted straight into a bed on there and bypass A&E. In our current times this would mean I would reduce the chances of me coming into contact with patients in the Emergency Department and get treated by nurses that deal with lines all the time. Quite often in A&E the doctors and nurses aren’t trained to handle a Hickman line (you have to do an extra training course) but this doesn’t always stop them from having a go which means I then have to get assertive and tell them to “back the fuck off” before they do any more damage!
So I ended up ringing the ward at 8am on Thursday morning and speaking to the ward sister. I told her what had happened, she told me they didn’t have a bed but that she would ring the ward manager and get back to me. Half an hour later she calls and tells me there will be a bed in the ward for me later and to come in about 2pm. Luckily my suitcase was still half packed from my last stay so it didn’t take too long to get my bits together. The reason I needed to be admitted was because I would need to get my line either repaired or replaced and while waiting for my turn it can’t be used. Because my bowels don’t absorb fluids I would need to have IV fluids to make up for the feeds that I would be missing otherwise I would dehydrate.
So I’m back on the ward, albeit in a room I haven’t stayed in before so that’s a bit of a novelty. To get the line repaired or replaced you have to go to a department called Interventional Radiology (IR). This is a super high tech X-ray Department that not only puts in lines but deals with cardiac problems like inserting stents or getting rid of clots and other life saving procedures. So there is quite a demand for the department and even when you get a slot you can get bumped off if they get an emergency in. I was really hoping that I might get onto Friday’s list but when the doctors did their ward round I was told that IR wouldn’t add me to the list because my haemoglobin was too low.
Haemoglobin is the protein found in your red blood cells that carries oxygen around the body. Having done a quick google search I found that the normal range for women was between 115-165g/l but mine was just 70! This would mean that if they needed to put a new line in the chances of complications arising from blood loss would be higher and could be more problematic. So the only way to fix it was to have a blood transfusion. I have to admit that the idea of having someone else’s blood pumped into me freaked me out a bit but I knew this was the only way to get the haemoglobin levels up quickly. The fact my haemoglobin was so low wasn’t a huge surprise as I was actually diagnosed with anaemia months ago. I had been prescribed iron tablets but haven’t been taking them the last few weeks cause they were upsetting my stomach. Obviously I do really need them so need to find out if there’s an alternative that might be a bit kinder to my sensitive tum.
So I had the blood transfusion...
...but now have to wait until Monday to get added to the IR list because they don’t work over the weekend. It’s frustrating but that’s just the way it is. I’m hoping the transfusion will have raised my haemoglobin to a level that they’re happy with and then we can get on with the business of getting fixed and getting home.
Why is this post called ‘Human pin cushion’? Because that’s what I feel like. To have the blood and fluids I obviously need a cannula inserting into my veins but my veins are totally knackered. They’re tiny, they aren’t straight and they’re scarred from being prodded and poked on so many previous hospital admissions. Add all that together and it means that getting a cannula in or even having blood tests becomes a bloody nightmare. On Thursday it took 3 doctors a combined total of 12 attempts before they got a cannula in only for it to last 18 hours before it tissued (stopped working) and had to be taken out. It then took another 5 attempts to get a new one in on Friday and that was after the 4 attempts to get blood out of me earlier. So I’m fed up of being poked with needles but know that I have to just grit my teeth and deal with it. And talking of teeth I’ve noticed I’ve had a toothache that’s been niggling me during the week but that’s another story!
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