Stuck in a moment you can’t get out of

Stuck in a moment you can’t get out of

7th September 2019 1 By Andy Burrows

My Allograft 2018/19 – 29. 7th September 2019

By Andy Burrows, 7 September 2019

Everest descent vs Snowdon

I have now been in hospital 25 days. To put that in perspective, the hospital stay for my autologous stem cell transplant at the end of 2015 was 23 days. And that had been built up into something of a challenge in advance. This is ‘just’ a post-transplant complication. Yet another indication of how much bigger this treatment is than anything I’ve ever been through before. (The previous three rounds must have just been training!)

And the signs are that I’ll be keeping this room in Basingstoke Hospital for at least a little while longer. You’ll understand what I mean when I elaborate later.

In my last update, this time last week, I told you that the plan was to keep me on the IV antibiotic Vancomycin (3 hours twice a day) until I’d had my bronchoscopy on Wednesday, and then review based on the early findings.

Cannulas and sore veins

However, the most memorable thing about Sunday and Monday in the last week was the saga of the cannulas!

I remember saying last time that Vancomycin is harsh on the veins, according to all the nurses. And mine were increasingly objecting to this horrible stuff.

The way things seemed to go was that I’d have a new cannula inserted into a new vein (ok it’s only 5 seconds of pain, but it’s still pain!). The first saline flush would be easy, then the Vancomycin infusion would go fine for 3 hours. Then the post-infusion flush would start with a little sting and then be fine.

The next infusion would come along. The pre-infusion flush would be a slightly harder sting and then fine. The infusion would be increasingly painful. Then the post-infusion flush would be painful. One was so painful that I was physically sweating.

At that point the nurse would decide that the cannula could no longer be used. So, a new cannula would go in and the old one would come out, and the cycle would start again.

I lost count of the number of cannulas and veins I got through over the 7-10 days I was on Vanc.

The other thing to understand about Vancomycin is that every 2 days they have to take blood tests before and after one of the infusions to see what concentration of the antibiotic is actually being absorbed, so that they can get the dose to the right level.

I was aware that they’d been increasing the dose steadily, and perhaps that’s why my veins were taking it harder and harder. However, on Sunday (this was just over a week since they decided to switch to this antibiotic) I was surprised to hear that they’d now only just found the “therapeutic level”. Ok, doctor language but I’m not stupid. That means that all the doses previously weren’t enough to do anything to the infection! But now they’d got the dose right to do some serious bacterial damage.

Great! Monday comes along and my vein doesn’t even last the whole 3-hour infusion before starting to swell and bruise. The nurses were all alive to this by this stage, so were checking on me regularly. And when my nurse for the day saw the swelling start she just called a halt and took the cannula out.

And that was the last Vanc that I had. Not even one fully “therapeutic dose”! The doctors decided at that point that since my CRP (which incidentally had gone up again a bit) was “stable” and I appeared to be well, I could pause all the antibiotics (negating the need for another cannula) and wait to see what came out of the bronchoscopy.

That seemed ok to me, and I was going with the flow anyway.

Well, not quite. I had started pressing quite hard for a PICC line, because I was getting fed up with the bruises on my arms. Certainly on Tuesday I gave one of the doctors a bit of a hard time (by my standards) for prevaricating about whether they’d get things ready for me to have one.

The advantages of a PICC line, in case you don’t remember me talking about them before in a blog post or you haven’t seen my little video, are that it’s big enough for practically any drug infusion, you can get blood out of it, and it’s long-lasting (months rather than days, compared to cannulas). The only downside is that it takes a trained nurse or radiographer about half an hour or so to do. It’s a bit of a procedure! But in my view, well worth it.

My argument was that if I was going to need more drugs then a PICC line would avoid all the pain of multiple cannulas. And in any case if I was going to have more Vanc then cannulas were not getting me a full dose anyway!

Anyway, I had to give up on that argument because I had to admit everything was uncertain until after the bronchoscopy.

Mindbending Wednesday

Wednesday came along. I wasn’t told what time I would have the bronchoscopy. All I was told was that I had to be ‘nil by mouth’ from midnight, only allowed sips of water with my pills. No food, no drink.

Oh, and I had to have a cannula for the procedure!

As it happened, the porter turned up at my room at about 9:30am with a wheelchair and a hospital gown. So, I got changed into that and got wheeled down to the ground floor for the procedure.

I then sat in the waiting bay with my mask on (which I have to wear in all the public areas outside my room) for nearly an hour before they were finally ready for me. Into the endoscopy room I went and lay in the bed.

A bit of lidocaine spray (which stung initially) to numb my nose and throat, and then a bit of sedative injected through my cannula.

So, I was a bit sleepy, but vaguely remember the camera going through my nose and then into my chest. And I remember the water dribbling into my chest and me coughing on it, which is fine because it spreads the fluid so they can collect samples.

Then that was over and I was wheeled in the bed to the recovery bay for 30-40 minutes to come round from the sedative, with a nurse sitting with me watching my pulse, blood oxygen levels and blood pressure.

And then I was wheeled in the bed back up to my room on F floor and got in my bed to come round a bit more.

Within a little while I was fine, though still annoyingly coughing up the fluid from the test. So, I got dressed and had something to eat.

The consultant came in to see me soon afterwards (around lunchtime) to say that the respiratory team hadn’t seen anything untoward with the scan. A few ‘secretions’ but no sign of infection or anything nasty really. They’d taken samples which would be sent off for microbiology analysis (i.e. in dishes under a microscope), but they’d take a few weeks to assess.

So, he reckoned that since I’d been fine off antibiotics for a few days and they hadn’t found anything, and even though my CRP level wasn’t convincingly descending, I could probably go home if I wanted to.

I just joked, “so, how soon can you write up the discharge summary?!”

And as soon as he’d left the room I started packing up and texting family to tell them I’m coming home. The nurses came in and removed my cannula, and checked what pills I needed to take home.

And then I sat and waited for them to sort things out. Getting discharged after a hospital stay is always a longer process than you expect. It really is. You’d think you’d be gone an hour after they give you the green light. But, no, it takes hours, like half a day sometimes, to get things organised with your discharge summary (for your GP and other physicians) and your TTOs (tablets to take out).

Déjà vu

And it’s a good job it takes a while really. Because as I sat in the chair I started to shiver. I closed the window and put my jumper on. I continued to shiver.

When the nurse came in, I mentioned I wasn’t feeling right, so she took my temperature. Normal. Perhaps it was just the sedative continuing to wear off?

But I continued to feel worse. I got in bed. Under the covers. And shivered some more.

Not long later the healthcare assistant came at standard ‘obs’ time.

My temperature was 38.9C! She took it three times to confirm.

So, just like 12 days earlier, on the day I was expecting to go home, I was suddenly ill and not going anywhere.

Protocols kicked in. First, within 30 minutes, my blood was taken for cultures. Then soon after that a new cannula was inserted (I’ll say no more) and soon after that the IV antibiotics started. This time the doctor had found a much less toxic alternative to Vancomycin called Teicoplanin (don’t worry if these names mean nothing to you! I’m recording them as much for my benefit as anyone else’s – I do find it useful when I have to look back sometimes).

And I curled up in bed under the covers and shivered my way through the afternoon and early evening, sleeping and dozing.

Into the mist

I eventually managed to text all those people who I’d told I was coming home and correct myself.

It was a bit of a disappointment. But to be honest, I would rather it happen that way than to have spiked a temperature soon after settling in at home, and then have to go through the whole readmission rigmarole after they’d given my bed/room to someone else!

What it made clear was that there is some bacteria inside me somewhere which the antibiotics are effective on, but they’re not getting rid of it completely and they don’t know where it is.

By Thursday morning’s doctors’ round (which was the full entourage, including two consultants, registrars and even the nurse specialists!) I was back to normal on the temperature front.

I’d done some of my own detective work overnight, involving not just google but checking what I’d been doing around each of my temperature spikes.

It turns out there was a bit of a pattern. My admission to hospital on 16 July came 5 days after a pentamidine nebuliser. My admission on 12 August came 3 days after a pentamidine nebuliser. The relevance of the nebuliser is that it involves nasal/throat/respiratory irritation. The spike on Wednesday was after respiratory irritation from the bronchoscopy. The one on 23 August is the exception that proves the rule (I couldn’t find a similar coincidence!)!

The doctors appreciated the insight.

And they admitted that they are currently a bit mystified. All test results are coming back negative. The only ones outstanding are the microbiology reports, which you can’t rush, and the bronchoscopy ones could take up to six weeks to analyse (although the microbiologists are already asking weird questions about what kind of pets we have and whether I’ve been anywhere exotic abroad).

One of the other remaining options was to have a closer look at my sinuses on some sort of scan (turned out to be a CT scan) to “see if there’s something hiding there”. Fortunately, being a CT scan of just my sinuses, they could fit me in quickly on Friday afternoon. So, hopefully there’ll be some feedback from that on Monday or Tuesday.

But with the remaining investigations mainly requiring some patience, they also mentioned the possibility of “home leave” again. What that means may vary day to day, depending on what’s happening. What it effectively would mean is that they won’t discharge me, and will not turn my hospital room over to anyone else. But they will allow me to go home for most of the day, if I go back for the 6pm drip and stay overnight.

At one stage it sounded like the plan was to stop the antibiotics again today to “see what happens”. But when the nurse came to set up my drip last night, she said that the microbiologists had asked for more blood tests and requested that I stay on the antibiotics a further 5 days.

Making me nervous

We shall see what transpires and how that all pans out! I have to say, it does sound encouraging when microbiologists are getting interested. Roll on next week!

The funny thing is that after seeing several times how quickly an infection can lay me out flat from nothing, and being able to extrapolate in my head what can happen equally quickly if I didn’t get on those antibiotics (septicaemia)… it makes me quite nervous knowing that I have some unspecified bacteria somewhere that the doctors don’t know how to get rid of and could trigger any time.

How could I go home knowing that? How paranoid would it make me? Would I want to go anywhere that wasn’t 10 minutes from the hospital?

And to think that two months ago I was wondering how to avoid getting complacent with the weakness of my immune system!

Now when I eventually get discharged, I need to know not just that I “seem better”, but that the doctors are confident they have annihilated this bacteria!

Finishing on a positive

Last night I watched the movie The Shawshank Redemption for the first time. Wonderful story! I want to watch it again all the way through right now!

Here’s a quote that struck me. “Hope is good; it may be the best; and good things don’t die.”