Archives For infection

The 10th of March. 

The next several days are going to be much of a muchness, I think. I saw no doctors until this afternoon, so all morning I sat, waiting for them to appear, but for naught. Still, I had quite a pleasant time; I listened to Jimmy Carr’s Desert Island Discs and he chose I Will Follow You Into The Dark as the one song he would take which was correct. The rest of my time, I had Victoria Derbyshire/the news/Daily Politics on while I crocheted. I am very happy that I am able to do it again, now I can bend my left arm without jabbing the cannula needle into my tissue. I am developing some delightful bruises across my arm, it’s very attractive. 

Mommy came with coffee and lunch, and I was very happy for caffeine because I had none yesterday and I had a bad sleep because people kept doing things to wake me up. I think there should be some sort of rule that if I have not opened my curtains or buzzed you to open them then leave me the fuck alone in the morning. Bah. 

The doctor who has been wanting my blood all week came to see me this afternoon while my bed was being changed (she does have a name, it is Maria, and she did get some blood once I had the line) and she had some results from my tests. Bronchoscopy hadn’t grown anything specific yet but there is definitely infection, although she started by saying “There are no malignancies, no cancer” and I just thought WELL GOOD like I was not aware we were even looking for that but great news, thanks. My CRP has come down to 85 from 164 on Saturday, but it should really be less than 5, so I have a way to go. But the infection is responding to the antibiotics, so now we just have to keep going until it goes away. She asked about bringing down my oxygen, and I tried to explain how it feels when I take it off, but everyone seems unconvinced when I tell them while I am wearing the oxygen. She suggested I try taking off the oxygen for a little while then having my sats measured, just so they can see what they are. There was a period this afternoon while I was just sitting crocheting, no great exertion, so I took the oxygen off for 45 minutes, so my sats would definitely be only measuring the oxygen levels in my blood when I was breathing just normal air, no extra oxygen to prop them up. We got a nurse to come and check them, and they were 86%. 94% is probably the lowest that doctors would deem acceptable, so when the nurse went to report back what mine were, I was told to put the oxygen back on and to not try this again. I felt pretty triumphant because even though I was not breathing brilliantly, I was right and that was most important. When I breathe, I can’t get all the air out before I need to take the next breath in, unlike a normal person, so when I exert myself, it gets worse, which is part of why I get breathless so easily. At the moment, without oxygen, it feels like I am slightly exerted all the time, and if I don’t control myself, I might start to hyperventilate. 

Anyway. We have been watching some Crufts which is such fun. So glad I did not get tickets because I would be so annoyed that I couldn’t go because I’m poorly. Definitely going to be here until at least Monday, probably escape towards the end of next week if my CRP continues going down at the same rate. 

The 11th of March. 

So, same again. Except no doctors at all today. 

I had a late night, partly because I didn’t get my meropenem until just after half past eleven, and because there was a man calling out for a nurse for ages, and not using his buzzer like a courteous wardmate. Eventually, I closed my curtains and hoped he would eventually stop. Shortly after, I heard a loud crash, and the emergency buzzer. It emerged that there was something actually wrong with the loud man, and he wasn’t going to be making any more noise that night. He didn’t die or anything, but he was not well. Still, somebody probably would have attended to him earlier had he used his buzzer. If you seem to have the energy to call out without any real sense of urgency for a long time, it sounds like you’re not that ill. Well, in my opinion. I did feel a bit bad for being irritated but I am sure he is fine. That is what I’m telling myself anyway. 

This morning I managed to get the staff to pretty much leave me alone after my first set of obs, so I didn’t keep getting woken up. I set my alarm for 9 so it’s not like I’m having enormous lie-ins but I need a lot of sleep, especially now when I am poorly. Being woken up for breakfast at half past seven when I have my own and will eat it when I choose to is not going to help me get better. When I did get up, I listened to Radio 4 and just sat and crocheted all morning. My friends Vicky and Laura were going to come visit, but Vicky had a migraine so we have rescheduled, and I texted Mommy to ask her to come in earlier, as she was going to come at 4 instead of lunchtime as usual. Becky was going to come with her, so we let her know the change of plan and she was having lunch with her parents in the Jewellery Quarter so got dropped off after that, and they actually arrived within minutes of each other. She has been on a residential with school this week, so I told her about the exciting/upsetting events of the past few days, and she then told us all the stories of her week. As a pupil on a residential, you cannot imagine the amount of responsibility and pressure on the shoulders of the teachers looking after you. I don’t think people realise that as a teacher on a trip, there is not really any time that is a holiday because you are stressed about the kids in your care for the entire time. I could not do it. 

We had a great time watching things out of my window today – I have a very good view of the helipad, the car park of the old hospital, and all the floors of the middle third of the hospital, so we can watch everything that’s going on. The helicopter came down today (as it does most days to be honest) and I noticed for the first time all the people in the other wards looking out of their windows. It felt like we were a little community. Later on, just as Becky was about to leave, there was drama with what appeared to be a drunk man and three security guards, who would not let him into the car park. He was eventually taken into A&E, where I assume he had come from, and we saw no more. 

Mommy left a little earlier than usual, and I am going to spend my evening watching Crufts, then Room is on Channel 4 at 9 and I never got to the end of the book, so I thought I may as well watch it while I am here and have the time! 

The 17th of April.

Awake at half past five. Why? Stupid brain. I tossed and turned for a llittle bit, started listening to the Today programme, then got bored and watched an episode of Dexter. Mommy day my light was on so she came in to say hello, and I asked her to bring up my Tramadol so I could take it and give it a chance to start working before I started moving around.

I spent my morning frantically finishing Michaela’s black sheep, working right up until quarter to one when Daddy and I had to go to hospital for more bloods. Clinic was totally empty as it hadn’t started yet which was lovely, and Igor appeared promptly. All my cultures came back negative, but my CRP (infection marker) was 200 (it should be less than 5) so he wanted to make sure it was going in the right direction. We looked at my x-ray which showed no fractures, but the spaces between my vertebrae are smaller than they ought to be. If the pain doesn’t go away then I’ll need an MRI. Got some antihistamines from pharmacy as Tramadol makes me itchy, then Daddy took me to Black Sheep!

I got to see baby Blossom (so small!), and it was so nice to see Michaela back! I told her and James that I wanted short and vibrant, so now I’m a pink and blue pixie and I love it.

The 18th of April.

Three episodes of Dexter this morning. Plus several podcasts before I actually fell asleep. I’m so mad at my body because I’m not even on steroids – I ought to be able to sleep! I had my Tramadol upstairs already so I had it about forty minutes before I actually got up. After breakfast, I went through the weekend Guardian which took up until lunchtime.

This afternoon, I have finished Anna’s elephant and taken a frankly absurd amount of selfies because I am obsessed with my new hair. I feel pretty great about the way I look right now. Super fly. Yesterday, Michaela couldn’t get over the change in my face, which Ram also noticed, and I’m just like “Yes! This is what I’m supposed to look like! Do you now understand why I get upset about looking different “?

My right foot is swelling again a little so I’m taking furosemide but it’s still quite uncomfortable inside my slipper, so I might have to lie on my back with my legs in the air for a while. I’d also really like to go back to the gym but the pain hasn’t improved enough yet. And I have ulcers in my mouth that are not cooperating with the treatment I am doing, so tongue injections are a possibility this week.

The 18th of February. 

Right. Well. Hm. I was having a really good dream when my alarm woke me up this morning, but I had to get up because the PIP assessor was coming at 9. She was not a dragon as I had feared, but was in fact very nice and it’s all fine. After reading my file, she wasn’t sure why she had to see me but she came, I answered all the questions and she was gone by ten to ten!

My line site has just been hurting more and more, and the veins around it are much more prominent, so I decided we needed to go to clinic and get someone to look at it. I was right, because Ram’s pretty sure it’s infected and needs to come out. But if we do that, the vein might collapse. Sigh. Ram tried to ring Andrew but had to leave a message, but he did say it was urgent so I am keeping my fingers crossed that that makes a difference. 

We didn’t get home until two, so there was just time for lunch and some work on Winston the Aardvark before I had to go to the dentist. He and the hygienist were happy because I’m an excellent patient and I brush and floss twice a day. 

The 19th of February. 

So all I have done today is work on Winston, with an overhanging hope that someone might ring me with a solution to the problem with my line, but to no avail. 

Mommy woke me up at ten – my body is just constantly exhausted right now. It’s probably partly to do with the fact that I have an infection and it’s taking its toll. Since eleven, I’ve finished Winston’s head and three legs, and I’ll probably do the last leg tonight. Then ears, tail, face and sewing together tomorrow. 

There was a brief break when Becky came over with some fabric samples that we’ve decided will work for wedding cravats. 

I have very little to report because I am just waiting for someone to operate on me. I’m managing under the theory that this is hindering my breathing, but if I have the procedure and everything is still this laboured, I will have to deal with the possibility that I might not be able to go anywhere independently ever again. 

The 3rd of January. 

It’s never a good sleep when Chona is on. She is one of my nurse nemeses. She just grates on me and does utterly stupid things like trying to bleed my line back through the blue clave despite me having told her multiple times that it wouldn’t work, it would just clog up in the clave. Then it happened and she was surprised, because five years of having an apheresis line is apparently not enough experience to know what you’re talking about. She also felt the need to send newbie Mark in to check my blood pressure while I was trying to go to sleep because she thought it might have magically got better in twenty minutes, and he thought he wouldn’t get a SATs reading because I have nail polish on. Sweetheart, it doesn’t make a blind bit of difference. 

Today I hoped to see a doctor who might have some news, but all he had to say is they still don’t know what’s wrong with me, the viral swabs aren’t back, and I’ll be here until at least Monday when they might put me on oral treatment. I’m not best pleased with him, and  he’s going to find that out tomorrow.

When he was gone, I had a cry at Mommy because I am so sick of being here, not knowing what’s going on, not being able to talk to any of my doctors, and I can’t fucking breathe. 

I just don’t know how I’m going to get through tomorrow. 

The 4th of January. 

Home. Mommy had to come back last night and stay with me because I just felt helpless and could’ve ended up in a very bad situation. I also had a full-on go at Chona because she tried to draw back through the clave again on the red lumen which I’ve told her doesn’t bleed anyway. I actually was almost yelling “No you don’t listen when I talk to you, Chona”, I was so angry. She eventually shut up and did the correct things. 

Elizabeth who is an excellent nurse was on today so we told her how I felt, then when the doctor came round, it emerged that as soon as we’d established that I have flu, I could’ve gone home! The IV mero is for bacterial infection which I do not have, so the last few days of stress and misery have been for nothing. 

So now I’m at home with drugs, oxygen and my own bed. Just have to wait for my body to defeat the flu in its own time. So about three weeks. 

The 1st of July.

Well today is better – I have not burst into tears like I did last night after dinner. We decided that we would try one of my 7mg Zopiclones with one of Grandma’s 3.5mg ones that we still have to see if that worked, but no, it did not keep me asleep.

Anne-Marie came expecting to flush my line (I don’t know why as I told her on the phone it was out, the daft thing), but she took out my stitches instead. It was a lot easier than last time because they weren’t really tight in my neck and encrusted in dried blood.

I worked out this afternoon while watching Alphas, and had to chase away the black and white cat twice. Oscar was asleep by the window the entire time and was completely unfazed.

I got an adorable piece of post today from a lady who’s read about me in Cosmo and DM’d me for my address the other day – a pretty Ted Baker notebook and a Ciaté caviar manicure set so that’s lot of fun!

Oooh I am so looking forward to going away on Friday.

The 2nd of July.

Apart from being woken up by screaming foxes at half past two then not going back to sleep, today has been pretty stupendous.

Mommy went to the Post Office this morning and the new Cosmo with my piece in was there! I was almost too nervous to open it even though I knew what it said. It’s pretty perfect; they haven’t changed the copy that Julie wrote so I’m happy. My story is particularly pertinent today as the main headline on the news all day has been David Cameron saying “We need new antibiotics or loads of people will die from resistant bugs”! Yes Dave. You’re a tad late, but it’s the thought that counts. Hi, my name’s Kathryn, and I’m going to die from a superbug that drug companies find too uneconomical to try and kill.

This afternoon I went to meet Rahul who I went to Hallfield with so he could give me the blanket his friends have made for me and it’s so nice! I will definitely be taking it with me next time I’m in hospital. I basically just spent the entire time talking about myself which is terrible but I did find out the basic things he’s done in the last ten years (done English at uni, now working/living in New York and here doing real estate) before his car ticket ran out and we both had to go.

Becky came round to see the magazine and let us know how she’d got on at the chiro, and it’s nearly eight o’clock and I want to sleep so much.

Oh and I had to answer the door to the window cleaner in my kitty pyjamas this morning. But y’know. Swings and roundabouts.

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The 22nd of April.

I have pulled a muscle deep within my backside and it is causing me a fairly serious amount of pain. Ibuprofen isn’t an option because of potential dangerous side effects and I can’t use something like Voltarol because I cannot find the muscle to rub the gel into!

This morning I did normal, boring things, then at half twelve, Mommy and I went to Tesco and M&S to get me some protein snacks and more vegetables and soup. I must have appeared vastly interesting to small children, as in Tesco, a little girl pointed at me and said “She’s got pink hair!”, then in M&S, a tiny boy pointed in my face and said something made indeterminable by his dummy, but it sounded like “Radish”! That’s fine; I’ll be a radish.

This afternoon, I had some of the Super Vegetable Soup, then I did some exercising (just not any squat-like exercises). My mouth seems okay – comparing photos of it every day is helping me keep track of how it’s progressing.

A guy I’ve met a few times called Stephen is dying. He’s been terminal since 2012, but now he’s in the TCT unit with a collapsed lung, with maybe only a day or two left. He seems okay with it. I’m not sure how I’ll feel at that stage; I really hate not being able to breathe comfortable but I don’t want to die in a hospital. I don’t know how I’d be able to sleep, but any sleeping tablet would suppress my breathing more. It makes me death a little more real.

The 23rd of April.

I’ve been on the precipice of tears all day because of Stephen. It’s not because i know him particularly well or he’s had a massive effect on me, it’s just that it’s making the prospect of my own demise a little bit more solid. I am desperate not to die in hospital like he will because it would feel like I had been beaten, but logically I am not sure how I could avoid it. Dying from an infection is very different to your body slowly switching off, which is sort of what’s happening to him, I think. When I get the untreatable infection, if it’s anything like my most recent cholangitis attacks, the pain will be immense so I’ll be hopped up to my eyeballs on IV morphine at the least, plus whatever they are giving me to try to control the fever. When things start shutting down, ICU is probably going to be my destination, but I can’t bear the idea of it being the final place I close my eyes.

So thinking about that has taken up most of my day. I did some exercising as it’s a good distraction, but all in all I’m a little lost today. I’ve got to go to the QE tomorrow for photopheresis, and right now I really can’t predict how I’m going to deal with it.

The 27th of March.

I woke up with abdominal pain which was terrifying. I was able to go back to sleep and wake up again without it so it was just a pretend attack. We had to go out to hospital at half eleven to get to photopheresis for twelve.

A rather dull (in a good way) session – I didn’t alarm too much and  was finished by half past two. Afterwards, we popped into town so Mommy could pick up her new birthday handbag!

This evening, both Becky and Alison came over, so we had chats, but tonight I have been cold and tired. My white cell count was high today so I’m just hoping I don’t have an infection. Every day is so fucking stressful.

The 28th of March.

Woke up in pain again and this worries me. I checked my bloods from yesterday on myhealth and mu CRP was 16 which isn’t great, considering my white cell count too, but I checked back a fortnight and my CRP was 72 then, and I felt fine so we’ve just got to see what happens.

Photopheresis was a little bit lengthy today – my lines played up, the machine played up, it was all very boring, but I finally finished at about ten to three. Daddy and I were going to go and see The Winter Soldier, but we were going to be late and the Vue website was being a bastard so we postponed that until tomorrow.

James had come down as he and Becky are off to London in the morning, but she wasn’t home yet so he came here for a cup of tea and we had a chat. When Jonathan got home from school, James went to help him with the papers. Later on, he and Becky came back for some chocolate brownies made with an assortment of eggs, from mini to creme and caramel. I had one too, and they were rather tasty. I was lucky not to get a caramel one – I am not a fan.

I’m really looking forward to a big sleep tonight and no hospital tomorrow thank you.