Although it’s a couple of weeks since this all happened, I wanted to share with you an incident which in hindsight was pretty dangerous and scary.
I had been home from hospital 5 days after having my auto stem cell transplant and I did something really stupid. Deciding that actually the rules didn’t apply to me after all, I got some ear buds out and proceeded to clean my ears. Having done this (cautiously) many times before I didn’t think it was a problem and couldn’t understand all the stories and advice i.e. “don’t put anything smaller than your elbow in your ear…” etc. However this time I bumped my elbow whilst digging around in my left ear and felt immediate pain. But no blood came out so I thought I’d got away with it.
I went off out to clinic as planned, saw the docs and had a pretty standard (if weak and pathetic) day. That evening I was lying on the sofa watching a bit of telly when it suddenly felt as if my ear was wet. Feeling around carefully with my finger showed I was bleeding quite badly out of said left ear. I got some cotton wool and plugged it up the best I could, thinking that I had scratched it with the cotton bud and because my platelets were still very low (around 55, normal being 150 – 450…) that was the reason for the blood loss. It wasn’t sore so thought I’d see how I got on. I went to bed and having had to change the cotton wool a few times in the night, woke up on the Wednesday morning with blood on my pillow. I also now couldn’t hear a thing out of the ear. Not nice!
I decided I’d better get it looked at, so having phoned my specialist nurse at Jimmy’s I was advised to go to LGI in Leeds as they have a specialist ENT department. If you’ve ever tried to drive to LGI you’ll know that parking is an absolute nightmare. Emily ended up dropping me off outside A&E and headed off to go and try to find a space somewhere. I didn’t see her for the next hour and a half and when I did she was quite upset as she had driven around central Leeds for the entire time without luck, eventually stopping on double yellows with a ticket man not far away, almost at the end of her tether, and had to ask him where some sort of parking could be found. It turns out Leeds would be in shutdown mode that afternoon as it was the Olympic celebration tour around the city and most of the usual parking had been cordoned off. Anyway, I digress…
Back at LGI the A&E room was heaving and having a bit of a broken immune system I asked to be put somewhere other than in the main waiting area. The nurses then took me into a bay where I waited a good 3 hours until a ENT doctor came in. He had a look and said I had perforated the ear drum, that it looked like the blood had now clotted, and that he could either try to clean it up and risk it starting bleeding again in which case I’d have to be admitted, or he could leave it alone and said that it should dry up and fall out on its own after a week or so. The decision was easy having just spent over 20 days in a hospital. Leave it alone! And home we came.
It was pretty crap walking about the rest of that week with one ear working but it wasn’t painful so I could live with it. But by the Friday night I woke up in quite a lot of pain in the ear as well as my jaw. I knew something was not right. So it was on the phone again to the nurses and docs who said to come into Jimmy’s this time and that I’d be admitted while they gave me antibiotics and checked it out. Great stuff… I calmly packed a bag and off we went. bizarrely, I was put onto ward 89 again in the exact same room where I had been locked up after the recent stem cell transplant, which was like a 40-1 chance of that happening! I remember thinking I should have got a lottery ticket.
Nothing much happened that night besides being booked in and asked all the usual questions. The next morning, I woke up feeling okay and actually texted Em to say I felt like I shouldn’t be there and that I was taking up a bed for nothing. Then the nurses came in and took some blood out of my Hickman (Apheresis) line and put up a bag of antibiotics/fluids (standard practice). Within the hour I started to feel really rubbish. I suddenly began shaking like a leaf (the ‘rigors‘) and could feel the familiar feelings of a fever coming on strong. What the ####???!!!
Docs did what they always do when it comes to chemo/the aftermath/infections and prescribed bag-loads of strong IV antibiotics. Normally whenever I’ve had fevers before with infections and the like, a couple of Paracetamol usually does the business when it comes to bringing your temperature down. At least for a few hours. But not this time. It was horrible. I was even given a dose of Pethidine sometime Sunday or Monday, can’t remember which, to help with the rigors. As well as the temperatures I started swelling up all over (from the fluids they were giving me that had to be administered alongside the antibiotics to protect the vital organs) and my legs and feet broke out in these red spots. I have seen similar previously when I had really low platelet count. However the docs didn’t look convinced that this was the answer. I also had really low blood pressure which they were really concerned about. And on top of this I developed hypoxia on my hands and feet (they gave me oxygen to help with this). It struck me how often and how many doctors were coming in to see me, but didn’t think too deeply about it at the time. Also Emily was looking really worried and was with me as much as she possibly could be.
By Monday midday the docs were telling me they suspected this was a line infection. I have heard about them before and been warned that if I ever feel strange all of a sudden and spike a temperature of over 38°C I need to phone the hospital …as it could be a line infection. And line infections can be nasty. Deadly. But I’d lived with this pipe in my chest now for 6 months and had always taken great care of it to avoid infections, and even kept a close eye on any nurses that accessed it to make sure they were following protocol. Anyway somehow it appeared bugs had got into the line and were sitting there waiting for it to be accessed again so the devils could make their way into my bloodstream. That was the theory anyway. Not that they had been able to find any signs of the damned bugs so far. But as I was declining and the antibiotics weren’t fixing me I was wheeled into Acute Surgery on Monday afternoon and the line was removed under local anesthetic.
I am happy to report that within hours my temperature slowly came down and I started to feel a bit more human again. It would have been a real bugger if they had pulled the thing out and it had not fixed me! Because there is a chance I might need a line again in the coming months.
By the Wednesday I was much much better. Nurses were popping in to tell me how much better I looked. It turns out, little had I realized it at the time, that I had been put under the care of the Critical Care Team, and they had been really close to moving me to the High Dependency Unit. Both Emily (who had been researching the whole sepsis thing while I was lying there semiconscious) and the doctors told me how dangerous severe sepsis actually is, and that in the state my immune system was at the time it was pretty much 50/50 if I’d pull through. Wow. I came home on the Thursday and have to say I was pretty shaken up for the 1st couple of days back @ home. Em arranged a prescription of Lorazipam to help me chill out. I think it was a combination of weakness from the sepsis and the realization that it had been a close call that made me feel this way – with all the treatment and low points that I have been through I have never actually been so close to not coming home. And that’s something I hope I don’t have to repeat.
It is now 2 weeks since this went down, and it is already feeling like just a very bad dream. But it did happen and I am still weak from the incident. The moral of this story: If you have any kind of line, whether it be a Hickman, a PICC or an Apheresis and you spike a temperature or feel odd, get it checked out IMMEDIATELY. It could be the difference between life and death. And I am grateful that I was in the right place for this to happen …and as always grateful to the amazing staff at St James for their wisdom, care and compassion. Oh, and don’t stick cotton buds in your ears!!!