Archives For respiratory

The 9th of August. 

Well, I had a terrible night. It took me hours to fall asleep, then I woke up multiple times, too cold, couldn’t get comfortable. It is ridiculous that in August I am having to use my electric blanket. 

This morning, after a breakfast of porridge (weather appropriate), I wrote up a blog post, then I made the last two squares of the blanket. I think twenty is enough, once it has a border as well. 

I managed to spend almost all of my afternoon looking at the squares, at books and magazines, then back at the squares, trying to figure out how to join them. Tried various ways and eventually chose one, so I’ve joined six of them so far. This part will be tedious. 

Hope I have a better sleep tonight – up early for hospital tomorrow. 

The 10th of August. 

Another weird night – ages to go to sleep, then I woke at six with a horrific headache on the right side of my head, but it seemed to abate when I lay on my left. I had to get up at seven anyway and I was still getting pangs of pain, very reminiscent of the pressure headaches I used to get when I had the arm/face swelling and high blood pressure. I’m taking some co-codamol upstairs tonight in case it strikes again. 

Dr. Thompson was running pretty much to time this morning, so I didn’t have much chance to read my book. I really must try harder, because whenever I do pick it up, I want to advance the story. I really ought to just try reading it when I know I’ll have time. Anyway, I let him know how things had been since the venoplasty (arm the same, breathing slightly better) and he thinks next time I come I should do some tests so I’ll look forward to that. 

Nothing to do but come home, so I got busy assembling the blanket. I have sat in the armchair all afternoon, sewing squares together, then columns, then across the rows, then one border, and finally a second border. Now I just have to close up the gaps between the corners and weave in some ends and it’ll be done!

Oh and I have an appointment at the lymphoedema clinic, a week after I see the liposuction lady. I have to fill in a survey about my “quality of life”. Ha. 

The 27th of April.

It’s been a very peculiar sort of day. Started with respiratory clinic, where I had to talk to Dr. Thompson about the bronchoscopy. Curiously, from his perspective, it went quite well. I couldn’t have more sedation because I might have stopped breathing. Apparently when I got down there I was very uptight, anxious and in control. As soon as I had the sedation, all the emotion I’d been holding back came out and actually made everything worse. He also thinks it has been made worse in my brain because I have some sort of PTSD from NG tubes. So would you if you spent six months of your life having them shoved up your nose and down your throat, then vomiting them up along with chunks of your own dead stomach tissue several times a week. Basically, my brain has fucked me up for these sorts of things.

After this chat, we moved on to how I am now. He is not majorly concerned about my cough or CRP, we just need to keep an eye on it. He did send me for a chest x-ray to see if my right lung has inflated any more and it has, so that is pleasing.

 We left the hospital and had a quick trip into town so I could get another jumper, seeing as my fat arm isn’t going anywhere any time soon.

Got home about two, so we ate lunch, then packed up all the stuff we were taking to Mach. Daddy got home from his hearing aid appointment, had his lunch, and we finally left the house about four.

We drove straight here, so it took us only two and a half hours. The house is nice, the only downside is that it has no wifi. We also have the slight issue of the fact that Mommy forgot to put the breakfast foods in the car so she and Daddy have had to go shopping. She is poorly, it’s not her fault.

The 28th of April.

I slept surprisingly well, for not being in my own bed. It’s a novelty to sleep in a single bed that isn’t a hospital one. This morning was pretty quiet, just breakfast and writing about yesterday. I think that’s how this weekend will be done, considering I’ll be out at my normal writing time.

We went into Mach at lunchtime to a) buy me some toothpaste (forgot mine; had to use Mommy’s and it was so minty and painful), b) do some recon on gig venues and c) have some lunch. Well, the only toothpaste they had at the co-op was all minty, so I got one for children that is only mild. We checked out all the venues I’m going to and they should all be fine with the wheelchair. Then lunch! There are many cafés, and we went to one called The Quarry where I had some much needed coffee and some spinach, squash and sweet potato pie. It came with an enormous salad which I was incapable of finishing but didn’t want to waste, so we got a box to take it away in.

We then returned to the house for a little bit before Daddy took me back into town for my first show, Stuart Goldsmith, at 7. I went a bit early so I could get some food (a cookie), then I wanted some wine, but the bar did not seem accessible, so I had to ask a nearby stranger. She was very obliging and came back with a large Grig in a pint mug which I think I was supposed to give back. Oh well, it’s mine now. We had a nice time chatting while we waiting for our respective gigs – she and her friend were going to see Mat Ewins and Fin Taylor, so I wonder if they managed to enjoy both shows. Unfortunately, next to where we were waiting were several fire pits, and once they were lit, my breathing was fucked, and I had to put the oxygen on for the rest of the evening.

I really enjoyed Stuart’s show, very very funny. Could not recommend him more. My next show, Marcel Lucont, was at the school, where Nish had just been doing a show, so I went down there and met up with him and his girlfriend, Amy. Together, we went down to Y Plas because I had 40 minutes to kill and on the way we bumped into many of their friends, all the names of whom I have forgotten, They were all very lovely though. At quarter to nine, I needed to get going, so Nish and Amy walked with me back there, and we said goodbye until tomorrow when I’m seeing him (unintentionally) in two different shows. 

I was one of the last people in, so I was at the back with my oxygen. I didn’t enjoy it as much as the first show, but I think that’s partially because I felt like total garbage. He was good, I just wasn’t up to it.

Mommy and Daddy were seeing Ivo Graham at the same time, so we all went home together. Hope my oxygen levels return to normal tomorrow.

The 4th of March. 

Another day of waiting. But I am finally on the respiratory ward. 

Crappy night. I managed to fall asleep at some point, got the pillows arranged in a way that was vaguely comfortable. Somebody took some blood, although I wasn’t entirely sure that had happened until I found the gauze stuck to my arm. I missed breakfast again and I didn’t really want to buzz someone just to ask for some bread, so I ate the Pom Bears that Mommy brought yesterday instead. 

By the time Mommy arrived, I had curled up in a ball and was having a micronap (which I suppose just shows that I’m definitely poorly because I can’t do that when I’m fine), so I sat up and we had some lunch. Sam, my nurse, came to tell me that I would definitely be going down to 516 today, but we had to wait for a man to go a nursing home so another man could take his bedspace and I could have his room. If I got down there in time, the suctioning would happen today. Hm. 

Becky came to visit, so that was a nice distraction from everything else being so rubbish, and she had bought me a great book full of pictures of pugs in clothes and making silly faces. I can look at that when I feel like I might burst into tears. 

She unfortunately did have to go home, as she and James were going up to see his parents, so after that, Mommy and I just sat and tried to kill time until it was time to move. Another doctor who I hadn’t yet met came in, asking how I felt, and I said apart from the obvious, I feel fine. Turns out that my CRP has gone up to 163 from being 58 on Thursday, so that’s quite a leap, and now I’ve been started on IV antibiotics three times a day through the cannula that’s been shoved in my left elbow, meaning that now neither of my arms are able to function. Putting my pyjamas on will be interesting. 

I was finally summoned to the new ward about half six, and now I am sitting on my bed, on a mattress that is constantly inflating and deflating different bits because it’s designed for people who are susceptible to pressure sores, but I’m just finding it irritating. Honestly I am on the edge of tears every time somebody talks to me because I am so frustrated by everything – the spontaneous pneumothorax, how stretched the system is, my stupid veins being difficult to cannulate, my right arm being off limits because it’s full of fluid (and nothing can happen with that right now), the fact that I have to take a little bucket of chest fluid and a cylinder of oxygen with me whenever I have to pee, I can’t bend my left arm because of the cannula and can’t do much with the right because it hurts the muscles around the drain…I just want my normal life back. It wasn’t ideal, but this is intolerable. 

The 5th of March. 

I am much less weepy tonight. It has been a very typical hospital Sunday in that not a great deal has happened. I was woken by the suction being attached to the drain bucket (it’s actually just a tube that attaches from the bucket to a system on the wall that continuously sucks, but if I need the bathroom I just pull it off the wall and put it back when I return), but I don’t know who did it because I kept my eye mask on the whole time. If I hadn’t, I would’ve been blinded by the light being switched on above my head so I’m so glad I have it. 

I watched Sunday Brunch, much like any other week, I was just deprived of coffee until Mommy came with lunch. She had also baked some cupcakes, which had fallen over in her bag so they are a little bit squished but still very tasty. Now I have a box of cupcakes so I’m going to have to start giving them to the staff because there’s no way I can eat them all. Plus, Gareth came to see me and brought a box of French Fancies and a bag of Maltesers! So I am overwhelmed with tasty foods. He stayed for a good few hours and we had nice distracting conversations about what’s going on in his life (incredible gossip from his sleepy Spanish town where the vet murdered his wife 😱), which was much nicer than just watching dreary Sunday afternoon tv which is what we would have probably been doing. 

The cannula in my left arm is doing surprising well. I thought the vein would have blown by now but it’s still going, which is a relief. I’ve got no idea where they’ll put another one in when it’s time to change. Not sure how long they’ll keep me on antibiotics as it’s not like I have any symptoms, they’re just going off inflammation markers. I shall talk to the doctors tomorrow – thank god we get back to weekdays and normal service can resume. 

Coughing makes the drain site hurt. Ack. 

The 2nd of March.

I woke up this morning and it was clear that I needed to be in hospital. I had to have the oxygen on 3 litres when at rest which is far from acceptable. We talked about what was the best plan – do we ring haematology? Email Dr. Thompson? Or just go to A&E? We came to the conclusion that it was best to ring the CNS team, who got back to us very quickly and said to come up to the ward immediately. I finished my coffee, Mommy packed a bag and in we came. 

Jo, a nurse who has looked after me before and knows me, came and did my obs, and the first of the many doctors I saw today came. His name was Aran (I don’t know how he spells it so I am making an assumption) and we had a chat about my symptoms, then he needed to take some bloods, and for me to take off the oxygen for half an hour so he could do an arterial blood gas to see what the oxygen levels in my blood were like. He had a tough time getting the artery because mine are so small and elusive but he got there. It was not so terrible, but I will bruise.

He then went away, and after a while, he returned with Paul, one of the regs who saw me before Christmas. At rest, my sats were fine, which I found ridiculous but that was what it said. I suggested we do another blood gas after I’d walked a bit, and see what that was like. We had to leave me off the oxygen another hour to do that, so just after half past one, Aran came back with more needles and sent me off on a walk up and down the ward. I had to stop before I got to the end, but I finally got back to him, and felt like I might die. What was worst was that I couldn’t put the oxygen on to recover, and I couldn’t move or speak, just had to let him jab around in my wrist and after some time, elbow, to get the second gas. The other investigation that needed doing was a chest x-ray, which also happened very speedily. Everything has been so efficient today! So I went down to x-ray with a nurse and we had a nice chat about how we both look young (she said she was 40 which I do not believe) and then we couldn’t come back up in the lifts because the fire alarm was going off. Thankfully it was not a proper fire, and we returned to the ward.

Paul and Aran came back with looks of great excitement on their faces, and Paul asked “Have they told you?” Very much not. It appears I have a pneumothorax! That’s a collapsed lung, basically. No reason, just another stupid thing that my body has decided to do. 

To fix this, Paul had called the respiratory team, and a consultant called Ben Sutton came to see me. His opinion that the best thing to do would be a chest drain, because just aspirating with a syringe might not work and if I went home and it collapsed again we’d be in trouble. I agreed with this, and also mentioned that Dr. Thompson might want to know about this. He then came up to see me, and was not impressed that the ABGs had been done before the chest x-ray. Nevermind! 

So, chest drain. We had to wait for a respiratory reg to come up to do it, and Dr. Thompson supervised. We went through to a tiny side room, the purpose of which is something I am not entirely sure of, and I sat up on a trolley with a sheet across my front while Dr. Lugg, the reg, gowned up. First, he cleaned me, then poked me a lot between the ribs to find the gap he needed to get the needle in. He stuck a sticker on so he knew where to go back to, then I had lots of local anaesthetic around the site. There was a small cut, then there was a needle, and a wire to guide the doctor, some tubes, and a lot of pushing to get the tube into the place where it needed to be. Then he attached a very large tube, and many bubbles poured out of me. It suddenly made sense that the rumbly sensation I have been feeling was bubbles in my chest, and now they are on their way out. I could see them moving up and down the tube as I inhaled and exhaled. 

It doesn’t feel great, but I’ve had worse. The drain is firmly attached to my side, and the movement of air is slower now. I’ve had another chest x-ray to check the progress, which showed that it’s improving but hasn’t fully reinflated yet, which is how it feels. Dr. Thompson suspects I will need the rest of the air to be actively suctioned out because it might not all come out on its own. I’m sure that’ll be fun. While I was waiting to come back to the ward, I was talking to the nurse who was with me, Craig, and we were comparing physio stories, because he’d had a car crash which resulted in a brain injury and he’d been paralysed on one side, so he had to learn to walk again too. However, he was a very good physio patient unlike me, who would pretend to be asleep. 

Mommy didn’t really want to leave me, but by half past eight there were no signs of me having a bed, so I told her to go, and shortly after that, I got moved! 

Now I am in a cubicle (my favourite way to be) and going to the bathroom with the drain is interesting (I have to buzz someone), but I’m alright. I don’t think I will get much sleep tonight – lots of podcasts, maybe some Netflix. I need to plug my chargers in and get my pyjama top on, but I don’t need assistance for that. I do hate being so dependent. 

The 3rd of March. 

I am in NHS limbo. It has been a day of waiting. I did get some sleep – I don’t know what time I dropped off but I woke up at 9 in a rather curious position but at least I had some rest. However, that meant I had missed breakfast, so I asked the nurse for some bread and marmalade, and that had to do. It was not dissimilar from what I’d have at home anyway. 

I spent my morning wrapping myself up in my blanket and sheets, trying to get warm, and not quite falling asleep. Praveen, the reg from clinic, came to see me, wondering what the hell had happened since then, so I explained, and he had nothing to add so off he went again. 

Mommy arrived with food and more clothes, and we essentially sat around all afternoon waiting for my chest CT/Dr. Thompson, whichever came first. It ended up being the scan, and I had the fastest porter in the world (he was even faster than my chair!). 

When I returned to the ward, I emailed Dr. Thompson to let him know, and he replied to ask where I was, so I told him and he materialised shortly after. He looked at my bucket of chest fluid (it’s delightful) and determined that the lung isn’t going to reinflate fully on its own, so I need to go to the respiratory ward where they can use suction to get the last remaining bits of air out. We can’t do that up here because there isn’t the kit or the expertise within the staff if there are complications, which means that I am stuck until a bed becomes available down there. That was just before 4, and now it is nearly 8.30 and nothing is happening. It is nobody’s fault, it is just that the hospital is literally crammed to the rafters with patients and I can’t go and have the treatment I need until someone moves out, but they need somewhere to go. Until that happens, I am taking up a haematology bed which could be being used for a patient who needs it, and it will take longer for me to be discharged than it would have if there were enough spare beds to begin with. 

Mommy and Daddy have left after packing up all my things for when I do move, and I am just sitting on my bed, watching tv on my iPad and looking up hopefully every time someone walks past my room. If I think about how shitty this situation is, I nearly start to cry, but if I do that, I won’t be able to breathe at all. 

The 24th of April. 

Last night at Tiff Stevenson was great fun. I haven’t been to The Old Rep since I was at Hallfield and we went to see George’s Marvellous Medicine. It feels a lot smaller than it did then; row C was really quite close to the stage. I just wish the lady in front of me hadn’t been there as she was drenched in perfume and it kept making me cough. The show was really good – I was surprised to hear her talk so much about Black Lives Matter but she was really well-informed and we all did lots of clapping. After the show, she was in the bar so we had a chat and a selfie in which I looked awful. I need to just smile instead of pulling a face. She’s in the cool gang. 

Today, I’ve been trying not to succumb to the heavy cloud. For some reason, I decided to Google bronchiolitis obliterans (the technical term for what I have) and I found some information saying that once it develops, most patients die of respiratory failure in five years. I already seven years post-diagnosis. What does that mean for me? How long do I have left like this before I get even worse? How I’ve been was okay, I could cope with that. I am really scared that I’m going to lose the tiny amount of independence I have left. What if I become so breathless that I need the wheelchair even more? To the extent that I can’t wash and dress without gasping for breath? I really don’t know if I can deal with that, and suddenly it feels ever so real. 

The 25th of April. 

My shoulders ache this evening. More jabs today. I can understand why babies find it so distressing – it doesn’t just hurt at the time, every time I raise my right arm, I am sore. I am having lots of paracetamol. 

My mood has slightly improved; I do not feel quite so morose. I don’t know how proactive I can be about my breathing, I’ll just have to go to the gym as much as possible, really build up my muscles. I got my appointment for my next set of tests in October. Maybe I can improve things by then. 

For most of the day, I have been crocheting. I am making a Moomin to take to Robyn and Stu’s in May, and so far I have done the nose and the body up to the armpits, so it currently looks like a rather large nappy. We had to go out just after two to go to the GP, and today there was no palaver about what I was to be vaccinated against. Two in the right arm, one in the left again. Two more lots to go; one in a month, and the last one in seven months. 

Before going home, we went into Sutton because I had had a text from Waterstones to inform me of the arrival of my copy of Sara Pascoe’s book, and while there, I also ordered the new Harry Potter book because y’know. We went to Tesco too for some naan bread because we’re having curry tonight and the naans at M&S were unacceptable. 

Ouch. 

The 3rd of July.

I had literally about half an hour of sleep last night. This is not an exaggeration in the slightest – my body just would not go. And today I had lung function tests!

I got up just before seven and was essentially the walking dead until I’d had two coffees. Oscar decided to come and sit on me before I’d managed to get any breakfast so I had to wait for him to get bored before I could satiate my grumbling tummy.

I had my lung function tests at 12 and they were pretty much on time which was good. It was one of the nice chaps who I’ve had before so we had nice little chats in between tests. I think having a stronger core has helped me push for longer because Dr. Thompson said my tests were slightly numerically better than last time! Always good to hear. We always enjoy seeing him.

We popped up to 621 if they had heard anything about my line and it had in fact just been booked for the 14th! So that’s excellent news. Then on the way home, we stopped at Boots because I needed eyeliner and deodorant, then I got a pretzel as I’ve been craving one and my mouth can finally cope.

Then lunch, Mommy went to Grandma’s, I watched some tv, decided what clothes I’m taking away and had a chat with Dan from the Sutton Observer.

Tonight I am going to have lorazepam and I’m so excited.

The 4th of July.

Oh lorazepam is so good. I had like ten hours of sleep? That’s fucking miraculous, compared to my usual. I wanted to wash my hair today before we went way so Mommy and I did that first thing, then we could carry on with packing and having breakfast and things. I had made a list last night while I was still lucid so I know what I had to still pack this morning, so I was ready to go when the car was packed up by twelve.

I spent the first part of the car journey with my big green headphones on, listening to the Passenger album and being contentedly half-asleep. I was prodded to come to when it was time to stop for lunch, which was about two, so I did my mouthwash in the car before going to find something to eat. I started having a major quandary about the calorie options available but then I slapped myself around the face (figuratively) and thinking “You are on holiday. Calm the fuck down”. So I had a smoked salmon and cream cheese sandwich and a small skinny coffee cooler with an extra shot of espresso.

Then it was back in t’car to travel to Topsham! It was not too far, and it’s a perfectly nice place. My room was set up as a twin, which I made them change into the double I’d requested, made myself a barely palatable coffee, and unpacked the necessary. Handily, there are many plug sockets! We’ve just had a very good dinner in the restaurant (sea bass, crab and pea risotto, herb oil) and now I’m going to watch 8 Out of 10 Cats Does Countdown!IMG_0001_2

 Lorazepam.

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Disappointing biscuit.

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Tea to be nicked.

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Tasty risotto!

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Bed.