It’s 10am on Saturday 18th February 2012, and I’m drafting this in my notebook to be blogged when I get home.
I don’t know if I’ve mentioned it here, but for a year now I’ve been getting these “attacks” of back and stomach pain. Insane pain. Crushing, aching, impossible to sooth and impossible to get comfortable. The pain would ease after a few hours and then I’d be fine. And then, because I’m me, I never went to see my Dr about it.
Wednesday lunchtime this pain comes back, and this time it didn’t go away. It got worse, and was accompanied by vomiting that just wouldn’t stop. By around 11pm I was vomiting liquid and retching, and fainting a couple of times. It was not a good day.
I didn’t have enough credit to call NHS Direct, but I was desperate so I called an ambulance. In A&E they did blood tests and determined that I have pancreatitis. I got admitted.
Basically, pancreatitis is when the pancreas gets inflamed and starts producing enzymes that cause lower back and abdominal pain, and could effect the other organs. There is no surgery or cure available. The only treatment is to help the body recover on its own. IV fluids, no food, pain management. And to find out what caused it in the first place, and deal with that.
The two most common causes are alcoholism (not me) and gall stones. So I got sent for an x-ray and the most painful ultrasound in the world ever. The ultrasound technician confirmed that I had gall stones, but told me to act surprised when the Dr told me because she wasn’t meant to have done.
This was about 11am on Thursday. At this point I was in extreme pain but getting meds for that. I was mostly relieved to have a diagnosis. And glad that I hadn’t called NHS Direct. They would have just told me to get lots of fluid, lots of rest and to go see my Dr. And my Dr would have just told me it was because I’m fat. By coming to A&E I found out what was wrong with me, and I’m getting treated.
Eventually the Dr came to see me and tells me that – surprise – I have gall stones. He says that the best way to deal with them is to wait until the pancreatitis has died down, and to remove the gall bladder. I’ve already wikipediaed gall stones by this point so I knew that surgery was an option. I just assumed that, because of my size, it’d be their last resort for me and that instead I’d be taking “ursodeoxycholic acid” for two years to dissolve the gall stones. That treatment has “unpleasant” side effects and it once it ends, gall stones may reoccur. Fun. But the doctor seemed pretty sure that I should have the surgery, if not while I’m admitted, then within 2 weeks.
I’ll skip through the next 24 hours, but give you some bullet points.
– a wardmate who would not shut the hell up. I’ve never heard anyone complain so much.
– a wardmate (pregnant) who refuses to eat anything the hospital provides because it doesn’t fit her strict low-fat diet, who regularly disappears with a cigarette and comes back with crisps.
– a variety of nurses. Mostly nice, some super-nice, a couple who were just plain mean.
– a hot 3rd year medical student who got to practice taking patient histories by having an intimate, in-depth half hour chat with me.
– constant messages/support/errands/visits from certain friends.
– a complete lack of communication from other “friends”.
– mum getting the money needed, driving up and essentially living in my flat until I get out.
– pain. A lot of pain.
– pain meds. A lot of pain meds.
Then last night I got to see the doctor again. It was a different guy though and I’m pretty sure neither of them were the guy on my chart. Both came with a nice flock of med students though. This Dr agreed that I needed surgery. He explained that there would be “issues” relating to my weight and the “shape” of my stomach, but that these were not insurmountable. He told me the other option… to put a camera/tool/thingy down my throat (while conscious) and cut off the bile duct at the bottom of the gall bladder, allowing the stones to work their own way out. The complications being that a) the stones could cause any kind of havoc on their way out, b) the gall bladder remains and so I could get gall stones again, and c) – this is my favourite – the procedure itself usually causes pancreatitis.
I was prepared to beg for surgery, but didn’t need to. He thinks that surgery is the best option. But pancreatitis can cause problems in other organs, so they need that to clear before they can operate. Again, hopefully while I’m admitted.
So how am I? I’m on a constant IV drip, to keep me hydrated. I’m allowed to ingest fluids, but no food because that aggravates the pancreas. I’m in constant pain, but with the meds it’s manageable. I just can’t get comfortable. I woke up at 7am on the day I got sick and since then (75 hours) I’ve had about 5 hours sleep. I can get reasonably comfortable on my back, but have never been able to sleep like that. I sleep on my side, which at the moment is a physical impossibility due to the pain. So the only sleep I get is when I doze off, and when I’m on my back, it’s only for short periods. Wednesday night I was in A&E, and being admitted and treated and moved. Thursday day time I was getting tests and visitors and being moved again. Thursday night I got about an hour of sleep, in bursts of 15 to 20 minutes. Friday daytime was impossible to sleep because of the noise, and the comings and goings and the obs. Then last night the Dr approved some stronger pain killers for me. I slept! In bursts of 45 minutes or so, and only a couple, but enough to make a difference. I woke up this morning feeling better. I’ve managed to drink some milk (I’ve been on weak squash) and I’ve been able to sit in the chair by the bed for an hour or two.
Unfortunately I can feel the meds wearing off and the stronger pain coming back, so I’m going back to bed and paging the nurse. Another update later.
12.30pm Sunday 19th February
It’s been a bit of an up and down day. I feel better for a bit, then crap, then not crap. Mostly I feel not-quite-with-it. My obs (observations: pulse, respiration, blood pressure, temperature) keep spiking a bit, then dipping a bit. My blood sugar dropped quite badly this morning and they made me have some juice and some milk for breakfast, and tested me again a bit later and it was fine. In my obs just now my temperature was up and they were all surprised. I’ve been telling them for days that I feel feverish, but because they keep taking my temperature from the side of my head that’s had a constant fan blowing at it. I had ONE nurse, on Thursday, who pointed out that the fan-ear would be cooler.
I haven’t seen a Dr this weekend at all. I guess they’re all out playing golf. There are some doctors doing the rounds, and if I needed one, I’d get one. But at the moment, there isn’t much that can be done until the pancreatitis clear up. It was the amylase levels in my blood that diagnosed it, so I’m assuming that at some point I’ll get getting another blood test.
I’m not sure what’s happening with my appetite. I’m not allowed food until the pancreatitis clear anyway, but yesterday morning I woke up feeling kinda hungry. Then the breakfast trolley came around and made me all queasy. When I had to fill in the dinner menu (I have to do it for the bed, not for me) some of that sounded quite nice. The IDEA of food seems okay, but when food is actually presented to me it really doesn’t seem okay.
My brain has registered that I haven’t eaten and keeps telling me I’m hungry, but the rest of me disagrees. I think even if the Dr told me I could eat right now, I’m not sure if I would. We’ll see, I guess.
In general, I’m tired, achey, tired, hungry (sort of), my stomach hurts, my chest hurts, my back hurts, I’m scared, worried, bored and a little high.
Hope you’re all doing better than me.
2am Monday 20th February
Here are some things I have noticed:
– some people are very, very stupid. You can’t go home until you keep down food, so you smother that piece of toast with 4 pats of butter.
– some nurses are very, very attractive. I’m not naming names.
– it is very, very annoying to go 4 and a half days without getting a decent chunk of sleep. I’ve just woken from a 3 hour sleep, which has been my longest so far.
– it is very, very scary to be in hospital, especially when what you have is potentially life-threatening.
– it is very, very daunting to know that if you get the operation that will sort out your current issues and prevent them from recurring, it will lead to a potential slew of other issues.
– it is very, very worrying to think about how you’re going to cope with all the drastic changes you’ll need to make to live life healthily without an organ.
– it is very, very hard to put on a brave face when each visitor shows up and pretend you aren’t quite as scared, or daunted, or worried as you really are.
12.15pm Tuesday 21st February
Well, things have progressed. The Dr decided yesterday that I can start eating again, so for dinner I had a small bit of tomato soup and a teeny tiny salad. I wasn’t sure if I was going to vomit it back up, or if I’d get lots of pain, but I didn’t get either. So later in the day I had a sandwich and a banana and that stayed down too. Et voila! I’m eating again.
I get to eat for a whole day, and then go on Nil By Mouth at midnight, because they hope to do my surgery tomorrow morning. They have to do blood tests to make sure my pancreas is okay, but it seems to be. And obviously, if an emergency comes in, I’ll be bumped. But at the moment I’m on the list.
In the meantime, my pain is better. As long as I stay still all I get is the odd spasm. When I move from sitting to standing or lying, that hurts, but then I quickly settle. And when the pain killers wear off all the pain comes back. My lower back, my stomach. But they are keeping me nicely dosed up.
My biggest problem is the sleeping. I still can’t sleep on my side. I can lean a bit further now, but find that after an hour or so I regret it. I can sleep for 2-3 hours at a time, but I’m a fidgety person and a fidgety sleeper. Sleeping that long without moving leaves me waking up stiff and in pain. So I’m still uber-tired, but I’m doing okay generally. I’ll be doing a lot better once the angry noisy patient on the left of me and the angry noisy patient on the right of me are gone.
5pm Tuesday 21st February
The Drs seem to think that I’ll be getting surgery tomorrow, but from what I’ve seen going on, and from what I’ve heard from other patients, that doesn’t seem likely. There are a lot of gall bladder patients coming through my ward. Tanya had been diagnosed with gall stones 4 months ago and was still waiting for an operation, but this was the first time she’d been admitted for the issues caused by the stones. Becky has already had her operations bumped back 3 times. She was meant to go down this morning. Saw the anesthetist, signed the form, got all prepped, then they bumped her. They’ve just moved in a new girl next to me. She was diagnosed with gall stones in October. Since then she’s had 4 attacks strong enough to put her in A&E and one attack of pancreatitis. She’s been here 5 days this time and each day she was meant to be getting the operation then they bumped her. It’s the same, patient after patient. Months of pain, then bump after bump. I only found out about this last week and they reckon I’ll have it out tomorrow. I don’t know. I’m not holding my breath. (Mostly because it’d hurt too much). I’ll assume I’m getting the operation when I’m down there being anesthetised.
I’m noticing other differences. Everyone else was quizzed about their diet and they’ve been told to have a strict low-fat diet from now on. Nobody’s mentioned any of that to me. I’m under a different Dr too. Although someone mentioned that my Dr did their overweight uncle, so maybe my Dr specialises in the bigguns.
I get that every person and every patient is different, but it’s very confusing.
Mum and Cayden started talking to me earlier about the aftermath of the surgery. I have been mostly focused on GETTING the surgery, but I have been thinking about what happens afterwards. And not just about a healthier lifestyle and diet once I’m all healed. Usually, and ideally, this operation is done laparoscopically (keyhole). You can have the surgery in the morning and be home by the end of the day. However things like obesity can cause problems with keyhole surgery, and it’s highly possible they’ll need to give me open surgery, which is much more invasive, leaves a bigger wound and takes a lot longer to recover from. The issues this would present for me include the fact that I need to go up a flight of stairs between my front door and my apartment, that my mattress is on the floor, my sofa is short and low, my bath has no handles, etc, etc, etc. It will be a rough 6 weeks – even aside from the pain. I DO know that. I just try very hard not to think about it. I just want them to take the damn gall bladder out. I’ll deal with extreme pain for 6 weeks, as long as I don’t end up like some of the other people in here living with regular and strong gall bladder attacks for months and months – as well as all the complications that can arise.
Although at the moment all I want to do is sleep, really. That and play with my cats.
5.15pm Wednesday 22nd February
Today has not been so good. I managed to get a decent amount of solid sleep – which allowed the nightmares back. Then I (and everyone else on the ward) was awoken by the newest member screaming at the nurses in the most grating, horrendous, annoying Liverpudlian accent. Apparently the nurses were treating her badly by not giving her morphine, and they had to go interrupt the Dr while he was performing surgery so he could prescribe some, and the oxy-something-or-other that they were offering her wasn’t good enough and they were treating her like she was a “crack addict” and this’d been going on for 20 years now and she was going to report them and blah blah blah. And all of it loudly and repeatedly, in that bloody accent. At 5 in the morning. So when they came to move me to a different ward (off the 72 hour ward that I’d been on for 112 hours) I was actually kinda relieved. Until I got there. The nurses insist everyone get out of bed for breakfast – even if they’re on Nil By Mouth like I was. They kept closing the curtains around me for no reason – which I don’t like because I’m in a building full of strangers and I wanna be able to see who’s coming towards me. And there was zero phone signal, despite the actual sign in here that says we can use phones. And…
Well ok. Looking at it now, those things aren’t much. But at the time I was tired and in pain and scared about the op and frustrated and angry. So I cried. A lot. And I called my mummy like a great big baby.
And then on top of that, my surgery was bumped. Not too surprised about that though. I was expecting it. But all in all it was a generally sucky morning and I just wanted to go home.
Then Mum came and hung out with me for a bit, and I had some food, and I’ve slept a bit more. And now I don’t feel quite as bad. I’m still tired and frustrated, but I’m dealing with it better. I’m a wee bit more bored now that I can’t access the web on my phone or on the iPad (did I mention that Kat has loaned me her iPad while I’m in here?). I’m finding it a lot easier to sleep now so I’ll probably do more of that. Hopefully without the nightmares.
11.44pm Wednesday 22nd February
This time last week, I called an ambulance.
6.10am Thursday 23rd February
Why do all the nurses find my pigtails so adorable?
I just scared one of them by talking to her when I was stood up. She hadn’t realised I was so tall.
I have an annoying neighbour who watches Bollywood DVDs on her portable thingy without headphones, all day long. Even if the main TV is on.
I just realised that I slept a solid 6 hours, with no nightmares that I can recall.
As far as I know I’m still due to have surgery this morning, which, when I think about it, is a little bit scary.
I was admitted just over a week ago now. A week and an hour-ish.
I’ve been Nil By Mouth for 6 hours and my mouth is really dry.
I really, really, REALLY miss my cats.
1.30pm Thursday 23rd February
I had the uber shower, with the special disinfectant. I had a conversation with the surgeon about what the operation entails. I signed the consent form. The nurse even came and did the checklist. Mum came in at 10 and has been sat with me because I don’t want to go down without my mum.
Then a Dr came in…
and bumped me. He was a little funny though. Said I was being bumped because people kept wrapping their trees around cars. And that they’d do my operation tomorrow, dependent on the idiots of Stoke-on-Trent.
So I drank a pint of squash, stole one of Mum’s sandwiches and sent her home. Now I’m going to watch an episode of Castle on the iPad and have a nap.
9.15am Friday 24th February
Well, I haven’t been bumped yet. A very surgeon-looking surgeon just came in. Apologised for yesterday. Said that after rounds he’d go down and look at the board and see what my chances are. He also said that if the right sort of consultant is on call over the weekend I might not necessarily have to wait until Monday. In the meantime, I’m hungry, my mouth is dry, and all I can do is wait. Again. I’m beginning to understand why all those patients in my last ward were so frustrated. Now that the pain isn’t quite so dominant, I’m getting antsy and want to go home. I have the opportunity to go home and get an appointment to come back in the next two weeks. At the moment there are some problems with that:-
– Mum would have to go home because I’d need my bed, and we don’t know if she could get back for the op.
– I’m still in pain from the gallbladder that got inflamed during the pancreatitis and while they’ll send me home with meds, I still can’t sleep properly and I probably wouldn’t be able to get out of my bath.
So, at least until I’m sleeping properly and fully mobile, the current plan is to stay in here where there are showers and LOTS of pain meds.
10.30am Saturday 25th February
I got bumped yesterday. Not at a nice convenient time though. They came and told me at 6.20pm. Mum had been sat here since 10am. I’d had no lunch or dinner. Very frustrating.
But the right type of surgeon is on over the weekend, so they’re hoping to get me done today or tomorrow. So I’m sat here again. Showered, check-listed, Nil By Mouth. Mum’s here. Hopefully if they bump me today it’ll be early.
I’m getting a lot more annoyed and frustrated with the whole situation. I just want to go home. I can sleep on my side now – one of them at least. So I’d be okay at home, but that would mean not having Mum here when I do finally get operated on.
10pm Saturday 25th February
I’m getting angrier and angrier with this place. At about 12.30 a smiley-faced doctor came in and told me that they wouldn’t be able to fit me in this weekend.
He did say that they could give me a slot on Tuesday and they’d be happy to keep me here until then, or they could send me home and give me an appointment in the next two weeks or so.
So now I’m “booked” in for Tuesday. Even if they can do my surgery laparoscopically, by the time I get home I’d have been in here for two weeks. I want to go home! I miss my bed, and my cats, and my computer, and my flat, and Ravelry, and the internet, and freedom. I’ve decided that if they bump me on Tuesday I’m going to go home. I don’t want to have the operation without mum here, but I don’t want to stay in here getting bumped every day either.
Then on my way back from the bathroom I bumped into my Dr at the nurses’ desk. The very first guy I saw, who is also the guy doing the surgeries this weekend. He said he’d been “lumped” with my surgery and that he wasn’t looking forward to it because of the complications – while he stared at my stomach. I remember, when he first told me I needed surgery I said I “really really wanted it” and he said he “really really didn’t want to do it.”
I just got the impression that I keep being bumped because they’re foisting my surgery off on each other because no one wants to do it. I was angry. I told mum when she came in for visiting, and she’s livid. She’s going to “speak” to him tomorrow. She knows he’ll be here – we’ve been told that. And mum is very good in these situations. Even if he’d come right out and said “no one wants to do it”, I’d just fume quietly. I can’t do complaints and stuff.
Which is why I won’t complain about today’s nurses either – although I’ll probably tell mum. Yesterday morning I developed a cough. I was Nil By Mouth all day yesterday so I couldn’t drink to soothe it, and it got worse. I coughed all night and today it turned wet and rattly, and my throat got so raw my voice turned husky. I’ve mentioned several times, to several nurses, that I have a cough and that my throat hurts, and is there anything they could do. They first one just seemed to ignore me and went on doing my obs. The others all said they’d see what they could do.
The nighttime meds trolley just came round and I told the nurse that my throat was killing me because of the cough. She says there’s nothing she can do about it, and that I should’ve mentioned it earlier.
I’m tired and sick and frustrated enough that I wanted to throw something at her, but I didn’t. I muttered that I had told several nurses about it, and let her walk away. Apparently she put it in the Doctors’ book and they’ll see to it tomorrow.
9.30am Monday 27th February
Yesterday was not a healthy day for me. My cough got worse, and my throat got worse. I mentioned it to the morning meds nurse, and again to the tea-time meds nurse. They both said they’d write it down in the Doctors’ book and someone would see me.
At the 6pm visiting just after Mum got here, I had a big coughing fit. Coughing stuff up, head exploding, trouble breathing. Mum went to the nurses’ station to see why no doctor had been to see me. There were no nurses at the desk, but a couple of doctors who looked and found out that I wasn’t even in the book.
Mum. Was. Fuming.
Within the next half hour, one of those doctors – one of those weekend, on call doctors – had been to see me, listened to my chest, reassured me that I didn’t have a chest infection, come back a couple of times to check other things, taken arterial blood (ouch!) and said there was a mild possibility of the pancreas/bileduct/something-or-other getting infested so he put me on preventative antibiotics.
In an hour, that one doctor – who isn’t part of my care team – spoke to me more, and did more, and explained more, than all the other doctors I’d seen since I’d been in. Which, incidentally, has been 11 days and 10 hours 😦
Still, in theory, I have a surgery slot booked for tomorrow. In theory.
10.30am Wednesday 29th February
I AM GALLBLADDERLESS!!!
I am also insanely uncomfortable, but very very relieved.
Yesterday morning the surgeon-looking surgeon came round and said that they were doing an appendectomy at the moment, but that I was next on the list. This was very good news. So of course as soon as I got to the bathroom for my shower I had a mild panic attack. Changed my mind! Don’t want the surgery! I’m fine! I’m going home!
But I didn’t chicken out – not that mum would have let me. I’m not overly clear on all the preamble now. I do remember the anesthetist coming to the ward, which got mum and I excited because I’d never got that far in the proceedings before. And then they wheeled me away.
As I said, after that it gets a little hazy, but the important bit is that I got the damn operation. They got the gall bladder, and all of the stones, and they managed to do it laparoscopically too – which was a surprise, but a nice one. I haven’t seen my wounds yet, but I have got 6 little dressings, and dissolvable stitches so I won’t need to come back. Everything went smoothly (even if it did take a little longer than usual: they estimated 2 hours and it took four) and there have been no complications so far.
They did put me back on my bed the wrong way round. Shortly after I woke up in recovery they tried to lift the head and it wasn’t going, so they tried to plug it in, and the plug was at the wrong end. Eventually they figured out I’d been put back on the bed the wrong way round, so I had to sit up, swivel and lay back down again. It hurt, but I was waaayyyyy too high to care at the time.
Pain-wise, I’m not too bad if I don’t move. Just uncomfortable. Very uncomfortable. Moving is really painful, even on meds. I didn’t move at all for the first 12 hours or so, then I really needed the loo. I made it to the bathroom under my own steam, although I needed help sitting up and getting out of bed. And I was utterly exhausted when I got back.
Then this morning I had a very grumpy moment when they made me get out of bed. It HURT. But I want to go home and I know that won’t happen if I don’t move. So I got out of bed, had a small wash here in my chair, and I didn’t get back into bed once they’d changed the sheets – even though I really really want to sleep. I’ve even made it to the bathroom – with no assistance standing up.
The surgeon-looking surgeon has been back round and confirmed that everything went well. He thinks I should be able to go home tomorrow, but the nurses were talking about me going home today. I’d like to stay in another night, but I don’t want the enforced routine or menu or the lack of sleep. I want to go HOME!!! The nurses have said that we can plan to go home tonight – gets meds and checks etc – and if I don’t feel well at the time, then I can stay another night.
My jobs for the day are to eat, keep the food down, get up and walk occasionally, use the bathroom and manage the pain. Maybe, if I’m really lucky, I’ll be able to stand up straight too.
8.10am Thursday 1st March
I didn’t make it home yesterday. I really was in too much pain. I couldn’t shuffle in the bed properly. I was just ignoring that because I wanted to go home. But Mum said, and Cayden said, and the Dr said that I really needed another night in here. The sensible part of me agreed.
Then I woke up at 4am and stretched without thinking and realised that it didn’t hurt. I tested all my aches and hurts, and realised that most of it didn’t hurt. I felt so much better I was half convinced that they’d injected me with morphine without telling me. I could move across the bed easily and cough without wanting to pass out. Transitioning from lying to sitting still hurt, but it was easier to walk. Just generally easier. There is still pain, but it’s pretty much only in the surgical area – whereas yesterday it was everywhere between my knees and my neck. I’m a lot more comfortable too. I just generally feel better. Until I try to move.
But because it was planned for me to go home yesterday, I already have a big bag of take home meds, so there’s no long wait today. I just need to see the Dr, then we can call mum and I can go home.
1pm Thursday 1st March
I’m home! Finally. Safely esconced on the sofa. I’ll post another update soon. Thank you for reading if you made it this far.