Let’s talk about Candida. Although it sounds like the name of sex worker who might leave her calling card in a London phone booth it is in fact one of 4 bugs that have grown in my Hickman line and by far the most serious.
Candida is a fungal infection that is yeast based and it’s nasty little spores can migrate round your bloodstream and settle in various places in the body, potentially causing havoc. In my head I imagine them to be a bit like when you pick a dandelion and blow and the little fluffy bits catch the wind and off they go. The places they like to set up home are the heart, brain, eyes and bones so this week I’ve been having various tests to check whether this has happened or not.
On Tuesday I had an Echocardiogram to check that there was no infection in my heart. Except nobody told me it was happening so imagine my surprise when a random bloke wheels in this machine to my room and tells me to strip off from the waist up!
The only reason I happily complied (apart from being a complete hussy ðŸ¤) is that I had had the exact same man scan me last year when I had the exact same bug. But still a few polite introductions wouldn’t have gone amiss before I had to get the girls out on show. To be fair this bloke has probably seen more of my tits than my poor long suffering Hubby!
So while I laid back and thought of England the man got his probe out and… dirty minds…scanned my heart. He actually has to press quite hard and it is a bit sore and he had me moving in to all sorts of positions so he could get a decent view (come on, mind out of the gutter please!) When he was all done he reassured me that everything looked fine, gave me some paper towels to wipe the ultrasound jelly off my boobs and then disappeared as quickly as he had come, no pun intended.
On Tuesday evening I found myself feeling absolutely knackered and had the start of a headache. Apparently I was asleep before the nurses did their handover at 7pm and I slept all night but when I woke up my headache had gotten really bad. It felt like someone was stretching a tarpaulin over my brain whilst simultaneously trying to squeeze my eyes out of my skull from the inside. The light hurt my eyes and when the doctors on the ward round examined me I couldn’t move my neck as it was stiff and sore.
Straight away they panicked that the infection could have spread to my brain and wanted to perform a lumbar puncture (LP) to which I promptly said ‘no thank you’. As a teenager I had two spinal surgeries and now two of my lower vertebrae are fused and when I had suspected meningitis about 10 years ago I had to have a LP which was made more difficult and painful because of the issues with my spine. “Write in the notes that the patient has refused” I heard him say, to which I replied that I wasn’t refusing, that I just wanted to wait and see if it was just a bad headache before we started messing around with my spine.
My plan to just lie in my bed, with all the lights off was interrupted though when the porters arrived from Interventional Radiology. Apparently I was going down to have a Picc line inserted and I was first on the list. Ordinarily I would have been really pleased by this as it’s a more permanent line that can be used instead of a cannula and I can also have my feed through it. But not that morning. But given the absolute nightmare I had been having with cannulas I had no choice but to go and get it done.
You see, Sunday night was pretty awful. The nurse had just hung a bag of antibiotics up around 6.30pm and although my cannula felt sore I thought I would be able to grit my teeth and just deal with the pain. Unfortunately the cannula had tissued meaning that all the antibiotics that were being pumped in were going into the surrounding tissue instead of into the vein leaving me with a big, red, swollen lump on my arm. So the pump was turned off, the antibiotics taken down and the cannula removed.
The job of having a new cannula in was ‘put out’ to the Hospital at Night team who are healthcare workers whose job it is to go round doing blood tests and cannula insertions out of hours. The job was put out just after 7pm with instructions saying I was difficult to cannulate and that my last cannula had been inserted using an ultrasound. But the lady that came was new and had been unsuccessful in cannulating me on a couple of previous occasions. I’m always happy to let them have a go though as sometimes they strike gold but this time there was no such luck.
So she sent the job back and I waited for someone else to come. Hopefully with an ultrasound machine. By now I should have had another dose of antibiotics and started my 2 litres of fluids overnight. It wasn’t until around 4.30am that the next person came to have a go at cannulating me. And guess what. No ultrasound machine and luck trying either! An hour later a doctor comes in wheeling the ultrasound machine! Ho-bloody-ra!!
So after about 30 minutes of looking for a vein, then 3 attempts we finally had a cannula. But when the nurse went to hang up the antibiotics just 10 minutes later the cannula tissued. So I was without IV access again! On Monday late morning two doctors came in, one to take blood and another to try and cannulate me. In the end they each ended up using one foot each…
So that’s why it was important to get the Picc line done. I couldn’t keep going through this rigmarole and my access was only getting worse with each passing day. So I went down to Interventional Radiology with a blanket over my head, like some kind of Z list celebrity, trying to block out the light.
The Picc insertion was really simple and straightforward. Because my infected Hickman line was still in place on the left side they had to use my right side. So the Radiology consultant scanned the veins in my right upper arm, found the one she was going to use, injected me with local anaesthetic, popped in the Picc line and Bob’s your uncle! Job done! All in all about 30 minutes.
Although it looks a bit bloody, that’s absolutely fine. They don’t like to change the dressing straight away incase bugs get in and it gets infected. Oh could you imagine, the irony if this bloody line got infected too??
So I went back up to ward and one lovely nurse brought me an eye mask so I would be able to lie in the dark and ride out this headache. But by lunchtime it had gotten worse and when I tried to stand up I felt really poorly so I told the doctors that I would let them do the LP. But luckily they had asked one of their neurology colleagues to come up and take a look at me instead. So around 6.30pm she came and did some tests and shone the brightest lights into my eyes. She had a special telescope thing (and I’m pretty sure that is the medical term for it!) that could look at the back of your eyes and check for infection and blood clots. Cause apparently they were worried that I might have one of those too. Thankfully she said that it all looked ok and that if I had gotten an infection in the my brain she would have expected me to be a lot more unwell than I was and that she suspected I was suffering with a migraine. Suitability reassured I went to bed and woke up Thursday morning with the headache just about gone.
The headache might have gone but one thing that was still very firmly in place was the infected Hickman line. I had had blood cultures taken on Monday and Wednesday and they both showed bugs, including Candida, were still being grown meaning that the 2 weeks of antibiotics hadn’t gotten on top of the infections. They changed the Teicoplanin to Linezolid, an antibiotic usually kept back to use on antibiotic resistant infections a few days ago so I was hoping that would have helped but I think the line coming out would be the only thing to really make a difference.
On Tuesdays ward round the consultant had said she would try to get it sorted but obviously she hadn’t (or theatres had been especially busy) so on Thursdays ward round I asked the registrar when the line would be coming out. He turned to the Deputy Sister who was on the ward round with him and told her she needed to chase up theatres but she told him in no uncertain terms that if the consultant ringing had had no effect then a staff nurse ringing definitely wouldn’t. So I told the registrar that he needed to ring because this line had to come out before the weekend and two minutes later I heard him on the phone outside my room talking to theatres.
To be honest I wasn’t hopeful that anything would actually happen but later that day a surgical doctor came up to talk to me about having the line out. He told me that the surgeon would be up later to consent me when they’d got the blood test results back. When it got to 3pm I asked one of the nurses to ring theatres and find out if I was definitely on the list for the afternoon but they said that my blood results weren’t back which probably meant it wouldn’t be happening that day. But then 10 minutes later the surgeon appeared; apparently my blood results had just appeared and it was now all systems go.
The surgical porters appeared from nowhere and I scrambled to get into a gown. I had fluids running through my Picc line so one of the nurses had to quickly, but still in a sterile manner, take them down, another nurse was filling out the theatre checklist and someone else was printing a second wristband (you need to be wearing 2 in theatre or they’ll send you back to the ward). The slightly mad panic was because lines are taken out in the emergency theatre meaning that if something more serious comes in through A&E or from another ward, you, quite rightly, get bumped off the list. So we were all hoping I would make it down and get the line out before an emergency struck.
When I got down there the surgeon was nowhere to be seen and after 30 minutes of waiting a different surgeon came and said he would now being doing it instead of his colleague who had consented me. I didn’t care who was doing it, so long as it was getting done and finally I was wheeled into the main theatre area. I’m always intrigued to see the workings of the place, watching them scrub and gown up, seeing the instruments get laid out and counted cause when I have my bowel surgeries it’s not something I ever get to see as I’m being put to sleep by the anaesthetist.
All the checks had taken place, the surgical drape was positioned over me and the surgeon had injected the local anaesthetic and just made his first incision when all the bleepers went off in the room. There was a red trauma call in A&E but because the scalpel had broken my skin that meant they’d started and would have to finish. The surgeon was joking that he’d picked up my Hickman line removal as a favour to his colleague and now it meant that she was going to be going down to A&E and would potentially get to do some exciting, life saving surgery while he was stuck with me! I could tell he was clearly gutted to be missing out on what would no doubt be a longer, much more exciting surgery. He said that he should be done with me in 15 minutes and might still be able to get in on the action but my line had other ideas and it took nearly 40 minutes to get it out. The cuff of the line had gotten embedded and I needed a lot more local before it was numb enough for him to cut it free.
The cuff is part of the Hickman line that goes under the skin and is made of a special material that encourages your body’s tissue to grow around it. This is what ends up anchoring your line in place and stops it from sliding out when the stitches get removed. But sometimes, as is the case with the last couple of my lines, you can get a bit too much tissue growth around it and it makes removing it a bit trickier. And a bit more uncomfortable. Although the local anaesthetic blocks the feeling of the sharp scalpel it doesn’t stop you feeling all the pulling and tugging that’s needed to get it free and there was quite a lot of that happening. There’s nothing I can do but grit my teeth, remember to breath and try to take myself off the my ‘happy place’ inside my head. Eventually it was out and it was all over.
As soon as he could the surgeon hurried off to A&E to see if he was still able to get in on the red call but he was soon back saying that it was ‘just a chest stabbing’ and that it had been de-escalated to only an amber! Surgeons are a completely different breed and I’m pretty sure they just see us a bit of meat or bodies on the table for them to slice and dice! So now I have a few dissolvable stitches instead of my Hickman line.
Frustratingly I was told on Fridays ward round by the consultant that today is being classed as day 1 of antibiotic treatment since it’s the first day of me having no line. So the last 2 weeks seem to have been for nothing. Well not nothing, I suppose they stopped me from going septic, which is always a bonus, but it just means that I’m going to have to be in for another 7-10 days of IV antibiotics before they can even consider getting a new Hickman line into me.
It’s Big Fella’s birthday soon and I’m desperate to get some home leave but it will all depend on the timings of the antibiotics during the day. The Linezolid I have at 10am and 10pm but the Caspafungin I have at 6pm and that might be the sticking point. I might have to go home for a few hours to see him after school, come back for my 6pm antibiotics (that takes an hour) and then we can go out for food or to the cinema. Or they might be able to move the time of the Caspafungin, but I will have to ask at the ward round on Monday. Even if I have to come back for the 6pm dose doing that will be infinitely better than having to watch him open his presents in the day room at the hospital.
Hubby was still testing positive for Covid on day 8 but I’ve asked what the rules are and apparently it’s two negative tests 24 hours apart or 10 days, the same as the rules for the staff. So I’m hopeful that I will get a visit on Sunday from him and the kids. If it’s not raining we’ll probably go outside just to try and protect me. Because of the line infection I wasn’t able to have my next dose of adalimumab which was due on Wednesday, and they won’t be able to restart the treatment until I’m off the antibiotics. Because adalimumab lowers your immune system it means it’s harder for your body to fight off infections which may be another reason why the blood cultures continue to grow bugs.
So that’s been my week so far and my battle with Candida and the other bugs. I still have to go to Eye Casualty at some point to get my eyes checked out but nobody seems to be in any rush for that to happen, least of all me. I know that potentially going blind should have me running down the corridors to get them looked at but I’m super squeamish about eyes and hate seeing other peoples eyes up close or having anything done to mine. I can barely cope with an eye test at Specsavers. The only thing that reassures me a little bit is that the neurologist had a look at my eyes when checking me out for the blood clot/brain infection and she would surely have spotted if there were anything glaringly obvious. But I will go at some point to have them looked at properly.
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