Following on from my previous post where the docs decided I needed an immunoglobulin boost to sort my flagging immune system out and try to get rid of the niggling coughs and colds, I had a call from one of the specialist nurses @ St James to say I was booked in for my first IV immunoglobulin booster on Monday 20th March. Still on antibiotics and having regular temperatures I headed down there early on Monday morning with much trepidation – knowing what hospitals are like when it comes to fevers (they don’t generally let you go if you have one).
I asked to see a doctor and explained that I was on a course of antibiotics and had been having fevers, and when doing my obs please not to confuse this with any sort of reaction to the immunoglobulin. The stuff is infamous for side effects – it’s a whole lot of foreign antibodies being pumped into your body, and some people’s bodies just say “hell, no – I don’t want this stuff in me”.
The decision was taken about midday to proceed. They stuck a cannula in me (fuck I hate those things these days …they don’t get any easier!) and started off on the slowest setting. The nurse would come and check my obs every half hour, and all being well, they’d then crank up the drip speed a notch. This went on for a while and it was a case of so far so good. After about 2 hours and just as I was being dialled up to max speed and perhaps 1/3 of the way through the gear I suddenly said to Emily “is it cold? I’m feeling a bit shivery” of which she replied that no, room temperature hadn’t changed. Oh, here we go…
Within minutes I was going downhill fast. Nurse came and stopped the drip. By now I was shivering uncontrollably (the ‘rigors’). She stuck some antihistamine in me along with Dexamethasone (a steroid that’s not too pleasant). I then felt the sudden desire to vomit. A bowl was produced just in time and I chucked up what little was in my stomach. My obs went crazy: heart rate shot up to around 130BPM, blood pressure went sky-high and my temperature was on 39+. I can’t stress enough how quickly this had all happened. Probably all in the space of half an hour. Anyway it was decided that I’d need to be admitted. They spent the next 2 hours trying to stabilise me and sort out a room on a ward. During this time I didn’t know much about what was going on. I was huddled in a chair with a blanket on me wanting to make myself as small as possible feeling horrendous.
Thankfully this feeling faded, my obs improved gradually and a room was ready for me on one of my 2 favourite wards: Ward 88. I know everyone on 88 & 89. I got up there and it was “Hi, how you doing? Haven’t seen you in ages!” from all the nurses. I’m crap with names, I never forget a face.
That night Em stayed as late as she could. I didn’t have so much as a toothbrush with me. All I had with me was what I’d walked in with: my jeans and a t-shirt (always take an overnight bag to hospital, even if you really don’t think you need it!). That night I did my best at impersonating a lobster. I went bright red and swelled up like I was about to pop – something to do with the allergic reaction it was suggested. I was also EXTREMELY itchy. I tossed and turned all night and had to really try hard not to scratch …as that just made it worse. At about 3am I asked the nurse for some antihistamine, but that didn’t really help at all if I’m honest.
Em came back after the school run with all my necessaries – change of clothes, phone charger, toothbrush, flip-flops, something to read, lots of cold sweet sparkly stuff to drink. Then it was a case of lying there for the next couple of days while the allergic reaction calmed down. The itching/redness/puffiness lasted about 3 days. Then the chest infection, coughing and fevers reared their ugly head. I was constantly getting 38+ temperatures and the docs decided to send me for an urgent high-res CT scan to see what was going on with my lungs. The results came back the following day and although there was nothing at all sinister showing up (i.e. signs of lymphoma, my constant omnipresent concern) there was clear inflammation showing, especially on the right lung. I’d been put on Tazocin on first arrival (standard practice) which is a strong broad spectrum IV antibiotic. This was then changed to Meropenem as it was deemed the Taz wasn’t doing much. They were scratching their heads as to what could be causing these regular high temperatures. It was decided the best way forward would be a Bronchoscopy where they stick a camera down my through and scrape out some of whatever they find down there. Not pleasant I promise, partly due to the fact that I was semiconscious throughout.
So that was the Friday. The docs were reluctant to change my treatment until they knew what they were dealing with. To us it seemed a lot like PCP pneumonia which I’d had a year earlier in January 2016. A wholly unpleasant experience whereby my breathing became more and more difficult as they ran this test and that test to try figure out what was going on. Back then I also had a bronchoscopy and it was diagnosed as a definite case and immediately put on high dose Sulfamethoxazole-Trimethoprim (cotrimoxazole), commonly known as Septrin. Probably one of the most scary experiences of my life not being able to breathe. Took me a good 3 weeks to recover from that and then was on a prophylactic dose of meds for the following YEAR to prevent it returning while I still had my feeble, pathetic immune system in place as opposed to a real one. This was after developing a nasty allergy to Septrin and then to its replacement called Dapzone (before I started out on this journey I wasn’t allergic to anything more than bee stings!!!). Med no. 3 (Atovaquone) looked like yellow paint and tasted like vanilla. PCP pneumonia is a fungal disease that gets into your body when your immune system is down and out. Back in the early days of the AIDS epidemic it killed a lot of people, before they learned how to spot it and deal with it. These days mortality rates are low but it does still affect AIDS sufferers and anyone with a dodgy immune system (people undergoing or recovering from cancer treatment say).
But anyway, enough history – back to 2017. I lay around all weekend bored stiff, pretty much the same. On Monday morning @ 8am a nurse comes bursting in and says I had tested positive for “Rhinovirus” and that I was being moved into a negative pressure double-doored sealed room later that day to protect the other patients. Wow, WTF??!! A quick bit of research via Dr Google and it turns out Rhinovirus, despite the scary name, is just the common cold! All this for a cold?? Surely not. Em arrived just after the school run and we waited around to see the consultant (and the entourage that follows them around) to hopefully get some answers. Around 2pm the gang arrived. The bronchoscopy had come back with a definite positive result of PCP pneumonia (told you so…) as well as chronic bronchitis. After deliberations (and protestations at being put into a sealed room) the consultant said I could go home with a higher dose of my long-term PCP medication Atovaquone. Yay, more yellow paint! At least I was being allowed home. I swear I am becoming less and less tolerant of the hospital food. It’s just bloody awful. No nutritional value. Hasn’t changed in the past 2 years. Boring. Tasteless. I’ve complained before and got nowhere. But anyway, I was going home…
It was Monday evening by the time we got home. I spent the next couple of days lying around taking my yellow paint AKA Atovaquone twice daily, as well as max doses of Paracetamol to keep the fevers at bay. I had a fan positioned strategically so that when my temperature went up I could manually cool myself down, like some kind of old air-cooled motorbike. I’d learned this trick in hospital ages ago. It works a treat: the sooner you can get your temperature down after a spike the longer your “feeling okay” window is. When we had last seen the consultant on the Monday we asked how long it should be before seeing an improvement. Emily had seemed to hear one thing and I another – I am sure the doc said ‘about a week’ (me and my rose-tinted spectacles) whereas Em had heard ‘a couple of days’. By Thursday unfortunately things seemed much the same. She decided to give the hospital a call and see what they thought. Um, and yeah she was right. They wanted me in that day to check my blood count, give me another chest x-ray and assess me. Was this going to be another re-admission??? Ah man. MOre hospital food?! I went into a bit of a meltdown but realised Em was right and with the weekend approaching this was the sensible thing to do (shes always right).
Off to St James we went. Bloods done. X-ray done. Then down to clinic. After looking at the results the doc said that the x-ray was looking slightly better and my blood count had stabilised. So he decided to persevere for another 48hrs and would have a chat with the microbiologist to discuss a possible alternate treatment. Phonecalls were arranged for Saturday to see if I needed to come in. However on Friday morning they rang me to say they had decided to change the treatment anyway and we needed to go over to the hospital and collect a new prescription. So it was out with the yellow paint and in with 2 new antibiotics I’d never heard of: Clindamycin and Primaquine plus a course of corticosteroids Prednisolone (50mg). The antibiotics came with a health warning: apparently lots of people suffered from upset stomachs and rashes with this gear. And with my history I though “here we go again”. But…
The transformation was almost immediate. Within hours the fevers had subsided. No upset stomach or rash to talk about. Worst thing was mild indigestion. I did have a big night sweat on the Friday night, like so bad I had to wake Emily and change all the bedding etc. But besides this by the next morning I was feeling much much better. I even got up, got dressed and went downstairs. And this has been the case up until now. Gradually feeling better and stronger every day. Cough not nearly as bad. The only thing that concerns us is I know from prior experience that Prednisolone is truly magic stuff. It can mask all sorts of ailments and give you your strength back. So while I still have a week or so to go on the antibiotics I have been told to wean myself off the Pred. Starting from today I have to cut back by 10mg every day so that by the time I go to clinic again next Tuesday I am “clean”. I don’t mind, I’m actually glad. As although it makes you feel stronger, it also messes with your emotions. I have been feeling a bit aggro, a bit “hacked off” at times over the past couple of days. Lucky for me I had a box of Lorazepam in the medicine chest, which basically chills you out. So its a bit like being 20 again: uppers, downers, chill pills etc. The doc thankfully took pity on me and added some more of those to my latest prescription. They just help to relax you and take the edge off. I think I’d be a bit of an unbearable bastard to be around without them at the moment!
So, hopefully things will continue to go in the right direction and I’ll be back on the horse again very soon. One thing I have learned is that even when you have supposedly beaten cancer off, it’s never actually gone from your life, and there are all these little side shows that can come in and give you a nip. I just want to get on with my life but it seems every time I get tantalizingly close something like this comes along.
Apart from this, they still have to figure out how to get this immunoglobulin stuff into me without it turning me into a red glowing puffy alien lobster. But will think about that aspect at some other point in the future!