The 8th of March.
In total contrast to yesterday, many things have happened today! Last night I got told I needed to be nil by mouth from midnight because endoscopy were probably expecting me to go down for my bronchoalveolar lavage (or bronchoscopy for short) in the morning.
Ben came to see me first thing and we had a very brief chat, which concluded with the decision that I would indeed have the bronchoscopy. There were only two other people on the list so I wasn’t waiting long until my turn.
Dr. Thompson was doing the list, so when I went down to endoscopy, we had the chat about what he would be doing and I signed the consent form. As he explained the process, I realised that it was going to be horrific and I would never have agreed if I knew what I know now. I was unable to have any effective sedation because my sats were too low, so I was awake for the entire thing. Here is what happened:
Firstly, I had to do a deep “Ahhh” and he sprayed the back of my throat with lidocaine (local anaesthetic) which stung like crazy and numbed the back of my throat, which made me feel like I couldn’t swallow. Oh and I’ll say now that I coughed intensely throughout, to the point where I nearly threw up multiple times.
Then another “Ahhh” to spray the vocal chords, so then I was coughing, in pain and couldn’t speak. I was able to signal that I could not tolerate having it go up my nose – if you imagine, the camera is about 4mm in diameter, and I could barely cope with the thinnest NG tube available, so having an endoscope up my nose and down my airway was not an option.
One more spray, then I lay down, but then he sprayed me again and I had to sit up to cough more. He gave me 2mg of midazolam which my liver gobbled up immediately and did absolutely fuck all, so I was completely conscious, eyes screwed shut, biting down on the plastic guard that was in my mouth to stop me biting through the scope. He put the camera down my throat and into my windpipe, then deeper into my lungs, where he squirted some water which was then collected to be tested for all the bugs. I was coughing and coughing, unable to move because another doctor was holding me down, telling me I was okay and to “Just breathe” (which is really NOT FUCKING HELPFUL), honestly feeling like I might die from the strain of it. Finally he pulled it out and I had an even worse coughing fit and nearly threw up again, and he sort of patted me on the shoulder and told me to breathe. I couldn’t speak because I didn’t want to cough any more, then I was brought up to the ward, where I had to have my obs done every fifteen minutes and remain nil by mouth for another hour and a half, and I just wanted a hug and to have a cry. It is the literally worst fucking thing I have ever had done to me.
Mommy came in early, and I had a little cry when I related the experience to her. She gave me lots of hugs and thankfully the nurse who was doing my obs was amusing.
Sometime before midday, a vascular nurse called Donna came to see me to talk about lines, and she said that they’d talked to Andrew Willis and he’d agreed that the mid-line was the best plan, so she’d come back after one o’clock with another nurse called Caroline and an ultrasound machine and she’d put one in.
I ate some food and drank some coffee, and it wasn’t long before Donna returned with all the gubbins. She found a nice vein using the ultrasound, and I actually could understand which black blobs were veins and which were arteries. Basically, if she could squish it and it went away, it was a vein, and if it pulsed, it was an artery. She and Caroline got gowned up and covered me in various sheets, and put some lidocaine in my arm. She got started, and it was all going okay until she tried to feed the wire into the vein for the line to follow, but something seemed to be getting in the way. Caroline picked up the ultrasound, and we could see the vein, but then there was a large black blob that wasn’t a vein or an artery, and it was stopping anything going any further up my arm. She couldn’t try any more for fear of seriously damaging the vein which would leave us with no options, so the next option is that I have to go to interventional radiography for them to use dye to find good veins. And of course I am allergic to the standard dye. Donna and Caroline went down to talk to Andrew, but he wasn’t here this afternoon, so Tracy (the appointment coordinator) has booked me in for a line, but I don’t know when that’ll be, and Andrew and Dr. Hopkins who has also been involved have been emailed.
As they were finishing, a porter came to collect me for my chest x-ray that I probably should have had on Monday after the drain was taken out. That was not very interesting, and I’m sure the results will just show that my lung has re-inflated.
Upon my return, I found Philippa and Kirsty from the liver team in my room, talking to Mommy, so they cheered me up from my shitty day.
I am exhausted, and I would really like some more progress. My breathing has improved – I’m not getting as breathless when I talk, for example, but moving is still a huge struggle. And somehow I think that I am not going to recover very quickly.
The 9th of March.
Oh, frabjous day, I have a line!
At eleven o’clock last night, the cannula site started bleeding. My immediate thought was “Oh, fuck.” but I was pleased because it meant that my need for a line was even more urgent. Thankfully, the cannula itself was still working, so I was able to have my meropenem through it. The nurse doing IVs last night offered to put another one in my right hand and I was able to warn her off, but she was quite keen. Last time I let people cannulate my hands, they were destroyed.
We had no idea what time I might be going down to angio to have my line put in, if at all, but I knew they would want me to have been nil by mouth, so I elected to starve until we knew what was happening. Plus, the nursing team were not thrilled that I wasn’t eating or drinking, so they made extra effort to find out what the plan was. I was effectively on hunger strike, but it was directly related to the outcome, because I knew if they called me and I had eaten, they wouldn’t be able to necessarily do what was needed.
I stayed hungry all morning, and I saw all of the respiratory and haematology doctors. Ben and his team are just waiting for results from my bronchoscopy, so hopefully tomorrow we might know something from them. The haematology chaps just pretty much wanted to know why I was still here, as if it’s my choice. It’s just that we (the doctors and I) need to know that if I’m discharged, I’m not going to be back in 48 hours complaining of other symptoms. So we do the tests, get back all our results, and if something needs treating, it gets treated. If not, I suppose it just means I am still recovering from the pre-Christmas pneumonia and my right arm still needs deflating. Fingers crossed there is news in the morning.
I was told by the nurse in charge that she had agreed with the booking coordinator that they would talk at 12, then I would know if I was going down this afternoon or whatever the plan would be. However, at 12, the nurse here rang and got no answer, then she had to go to a meeting, so we knew nothing. Two hours passed, and I was getting increasingly irate and hungry. Mommy went and hovered about for me, and found the nurse had returned and was in the office on the phone. Whether it was about me, I don’t know. But about half past two, a porter came to take me to angio! He didn’t have any oxygen, so had to go and get some (you would think that for respiratory patients it would be a requirement), then he and a student nurse took me downstairs. Then we had a problem down there because nobody had done a theatre checklist on the ward, so we did one in recovery, then the nurse had to go back upstairs to get my nurse to fill in her half of the checklist, and she came back (after getting lost) with my checklist and a red wristband to tell people that I am allergic to things.
I had a chat with a few people I now know down there, including Mark who has done a venoplasty on me before. Turns out the reason Andrew hasn’t been around yesterday and today is because he’s off sick, which is frankly unacceptable, but I suppose even doctors get poorly sometimes. Still, one of his “senior colleagues”, Dr. Hicks, was looking after me, and had been there when my case had come in on Tuesday. He decided that we were going to do a PICC, not a mid-line, and I thought I’d let him because if he fucked up my veins, he’d just have to fix them, and he would be in trouble with Andrew. I had not got the energy to argue. He also felt that dye wasn’t going to be necessary, and he could do it with just the ultrasound. Rather defeated the purpose of me going down there in the first place but OH WELL. It didn’t go swimmingly to begin with – he started on one side of my arm, didn’t seem to find a vein there, so had me flip it over. He found one there, but something caused a problem because he had to take out the wire and line he’d got in, then have me put my arm back the way it was originally. He finally got into a vein and it was all going to work, when I heard him say “Oh, I’ve done it wrong” which is not what one wants to hear on the table. He just meant that he’d cut the wire in the wrong place, so it was too short and he needed another one, thank god. When he got to the final bit, when the end of the line is being positioned very close to the heart, the x-ray machine came out and this time I could see what was happening! He was working on my left side and the screen was on my right, so I could watch my chest rise and fall, and the line thread across the screen into the dark mass that was my heart. It was slightly unnerving when I could feel the tip poking inside me, and I swear my heart jolted in my chest when it got prodded.
When I came back to the ward, I pretty much shoved a sandwich into my face, then I was wondering when I might get my afternoon dose of mero, because I wasn’t here when it was supposed to happen. Just when it looked like it might be coming, somebody in the bay across from my cubicle crashed, so everybody charged in there with trolleys and machines, so I didn’t get my drugs until half past six. I don’t mind, obviously I understand that my antibiotics are not quite the priority when that sort of thing happens, but I am going to be very tired when I finally get my night time dose. I may try to go to sleep and just leave my arm available. It has been a long day.