The 11th of May.
Shortly after tea last night, we decided that my breathing was so poor, a trip to A&E was required. I was just coughing and coughing, and I needed 3 litres of oxygen just to be comfortable. My chest was tight, and I couldn’t get a deep breath for the life of me.
Because I was having trouble breathing, and my recent history, I was whisked through A&E pretty quickly. I was seen by a sensible doctor who took some blood and sent me for a chest x-ray. Thankfully my lung had not collapsed again, but I have got some fluid on there which looks like infection and my CRP is 93 so antibiotics are required. It was a good thing we’d brought a bag.
I got to CDU at about half past midnight, so Mommy quickly unpacked the necessary stuff and went home. I was up for a little while longer, getting admitted and brushing my teeth. One of the old ladies in my bay talked in her sleep. Constantly. Last night’s gem was “That’s a good girl, now get in the cupboard.”
Managed to sleep through breakfast, got up to go to the bathroom and clean my face, then curled up on my bed again and slept for the rest of the morning until Ram suddenly appeared. I assume because he’s my named consultant, he must get notified if I get admitted. I told him what was going on, but because it is a chest problem, he doesn’t really have much to input.
Mommy arrived just as he and his minions were leaving, and she had brought coffee and food. I still found it difficult to rouse myself, just sat up every so often for a mouthful of coffee. Eventually I consumed enough to wake myself up, and for the rest of the day, I have tried to stay upright. Daddy came earlier than usual, but he was sleepy too, so we sent him home so he could have a nap and give some attention to Sam who will be confused that I haven’t been there to pet him.
Ben came to see me and we had a chat about my lungs. I told him what I’ve been telling everyone else, that I had been getting better but for the past few days everything’s been getting worse again. He said a curious thing about my x-ray in that one side is more lucent, that is to say more see-through, than the other. This could be caused by a stenosis. ANOTHER STENOSIS YOU SAY? HMMM. Need a CT with gadolinium. He wants to talk to Andrew but Andrew won’t be back in until Monday. Gah.
I am in a bed on 517 now. Meropenem for a few days, see what my CRP does. I’m in a bay which I hate because I have no control over when the lights go out or come on or if people are noisy or in the bathroom when I want it and I don’t like it at all. I don’t want to be here again but I have to and it is wank.
The 12th of May.
I had a terrible night and start to the day, but thankfully since mid-afternoon, it has been greatly improved by the fact that I have been moved into a cubicle.
I was forced awake by loud chatter in the bay between the two old women and two auxiliaries, and the woman opposite me has been playing Radio 1 as loud as the radio will go through the headphones, which is loud enough to have to raise your voice to talk over. She did not seem to realise that this is terrible bay etiquette.
Because of the terrible night, I felt like garbage, but the nurse had promised me a cubicle today, so I asked Mommy to come in early to help pack up my stuff if that happened. That obviously didn’t happen until later, but I was glad to have her there so she could draw the curtains round and I could have a cry about how ghastly everything was.
It seems this ward is where they send all the old people who come in to A&E with relatively short-term issues, and people with mental health issues that aren’t being taken care of by any other service, so it is really not somewhere I belong. However, Mommy ran into Ben and he said 516 is full of the over-90s so I might be here for a few days.
Some haematology doctors came to see me, but they had not much to say apart from let’s get some bloods done to see what your CRP is. No respiratory ones but they wouldn’t have much to add yet anyway so no great loss.
Around 3 o’clock, the nurse in charge poked her head in and said they were just clearing a cubicle for me. Thank god. I could not shove my stuff in bags fast enough. Now I might be near the nurses’ station but I’ll stick my earplugs in tonight and the Zopiclone will do its job.
My breathing is not as bad as with the pneumonia but I feel arguably worse now than I did in March. Like I am listless and have no appetite, and I am just exhausted of this bullshit. Can I please be well? Just for a little bit?
The 13th of May.
Having my own room certainly makes a difference. I slept much better, until half past eight when someone came in to ask me about drugs, to which I said NOT DRUGS TIME YET and went back to sleep until ten o’clock.
The consultant of this ward came to see me this morning but he hadn’t got much to offer. My CRP has gone up from 93 on Wednesday to 139 yesterday so the mero has yet to take any effect. Great, thanks.
Mommy came at lunch time, and Becky arrived shortly after to spend the afternoon. She and Mommy did most of the talking while I coughed and flailed around on the bed in various positions trying to find one that was comfortable for longer than thirty seconds. I was not successful. The usual school and cat chat which is a nice distraction for me. At some point, Tim from haematology came, and he was asking which antibiotics I am allergic to. It turns out that they’re the ones that they would add in with mero to cover a broad-spectrum of infections. Stupid unhelpful body. If I could bring up some cack they could test that and find out what bug it is, but this is the driest cough in the world so that isn’t happening.
That is all I really have to say about today. I still feel like trash, the drugs aren’t working and I am desperate to go home.
The 14th of May.
I’ve done less coughing today, but I think that’s because I have done more lying down. Usually, lying down makes it worse when I have a cough, but this time it’s the other way around.
I woke up about ten again, and quite early in the morning, a doctor came to take some blood but the results are still not in which is most bothersome. I highly suspect that the mero is not working because when Mommy arrived with lunch, I was really cold, and that is because I was spiking a temperature. Haven’t done that since sepsis in 2013 but I don’t think we need to worry about that just now.
Pretty much my entire afternoon was spent lying down and trying to get back to a normal temperature while listening to whatever came along next on Radio 4. It’s quite clear I’m feeling ghastly when I don’t think I need to be able to see.
Mainly I have been thinking about how much I want it to be tomorrow because all the doctors will be here and we can have a chat about what the fuck is going on and how it can be fixed so I can leave here and go feel like shit in my own bed.
The 15th of May.
I am sick of this. I have spent my whole day waiting for people. Mostly, it was doctors. I had spent the whole weekend waiting for it to be today so I could speak to the respiratory doctors and they did not materialise until nearly four o’clock.
This morning, I saw the doctor from this ward and the haematology team, but they had nothing really helpful to say apart from that they’d speak to the respiratory team.
So about four, Ben turned up with an ultrasound machine. He’d had a chat with Richard and they want to know where the infection is coming from, and so do I. The ultrasound machine was to check on the fluid in my lungs, but there’s only a small pocket at the top of the right lung so that isn’t it. He’s changing the antibiotics from meropenem to vancomycin and ciprofloxacin, and I’ll get onto that later. He’s also going to request a PICC because I’ll need vancomycin levels taking and my veins won’t be able to cope with that, and an echo because I’ve had some vascular trauma and hey why not? If those don’t work, then we get a PET scan to search for the source of the infection.
I am pleased to have a plan but I still feel awful, and the vancomycin has compounded things. It took two hours for a nurse to set it up, and pretty soon it started leaking out of the dressing. This was just after half six, so Mommy and Daddy left and they let the sister who’d set it up know. Someone finally came in just after eight, and she just set it running again but really slowly and hoped that would work, but if it didn’t, to buzz again and she’d sort it out. It didn’t, it just started leaking again, so I pressed the buzzer again. And again, and again. Only to find out after ninety minutes that there wasn’t actually a qualified nurse on the ward and now it’s past ten and this cannula is going to have to come out when one finally appears.
This is the worst I have ever experienced in terms of staff shortages.
The 16th of May.
Well I finally got my vancomycin. At half past six this morning. The nurse that I’d had for the past four nights came in for a fifth, unexpected consecutive shift because there were no staff across the board, it seemed. She took the cannula out, but then I couldn’t have a replacement dose until I had a new one and that was going to be very low down on the night doctor’s list of jobs. They finally appeared at about half past six this morning, but I had my eye mask on and ear plugs in so I was pretty unaware until the vanc was finished and it was time to get up.
The first thing that happened today was that I went for an echo. I looked very pitiful in the waiting room, hunched over in the strange, triangular wheelchair with my oxygen cylinder, coughing like a Victorian street urchin with TB. The receptionist got me some cold water, and thankfully they took me through quite quickly. It was probably the fastest echo I’ve ever had – I used to fall asleep in them but today I didn’t even have chance to get comfortable. That may have been because the test wasn’t going to find what the doctors were looking for, as I think I heard the technician say. Oh well.
This afternoon, I did a lot of coughing and flooping about on the bed. The cough has evolved into the kind where I do it less, but when I do, I cough and cough until the piece of phlegm moves, and then I am fine again for a while. Philippa from the liver team came to see me, and was telling us some vastly entertaining stories about the ward, when a porter rocked up to take me to angio for my PICC line! Surprise!
We had great fun downstairs because the ward hadn’t done a checklist, because they never send people for things like this so they didn’t know they had to do one, and then I’d been eating and drinking and had nail varnish on. That didn’t seem to be a problem though, so a doctor called Mr. Singh came to chat to me about what we were going to do and I signed the consent form.
It was not an easy one today. He kept coming up against an obstruction in my vein, which I could feel him trying to shove past (newsflash: not enjoyable!), and two other chaps behind the screen were shouting advice at him while I clenched my jaw and wished I had nice veins. He ended up inflating two balloons so he could get the catheter past, then he finished tunnelling it in and I could finally relax.
I want to go home. I say it every day. Not going to change.