Skip to main content

Another bloody infection!

The plan was for me to be discharged either Sunday or Monday and I was so excited to get home especially as Big Fella has his birthday this week. But on Saturday night every time I turned over in bed I ended up waking up with pain in my chest around my Hickman line. I thought maybe I had caught it or pulled it in my sleep and didn’t think too much of it until on Sunday I started to feel pretty poorly. 

Early afternoon I had to buzz for the nurse because I was coughing and coughing and couldn’t get my breath. It felt like there was a weight on my chest. The doctor came and ordered a Covid test and an ECG (both of which were thankfully ok). Usually Hubby and the kids come to the hospital on a Sunday to bring me clean pjs and we have an hour in the hospital restaurant together but I told them not to bother coming as I was still hoping to be going home the following day. I also thought that if I had a day resting I would start to feel a bit better but as the day went on I felt worse and worse. My whole body was aching and I felt like I had been hit by a bus. I was freezing cold despite being under multiple blankets and having layers or clothing on but it all got worse when my feed was connected. I spiked a temperature and my whole body became sore to touch; if someone accidentally brushed against me I would almost jump off the bed! 

If I had been at home I would have thought ‘that’s a line infection’ straight away and stopped the feed but being in hospital it wasn’t my first thought. Looking back the fact that the nurses were happy for the feed to continue running for almost 2 hours and they didn’t immediately think it could be a possible line infection does worry me. In the end I was the one who insisted that it be stopped because my temperature was rising and rising. 

Once they thought it could be a line infection the usual blood cultures were taken. They have to take blood from the Hickman line to see if there are any bugs in the line itself and also blood from each arm to see if it’s travelled around the body. Ordinarily antibiotics would be started straight away but for some reason they held off. It usually takes up to 3-4 days for the blood cultures to grow anything (if there is an infection) but apparently there was growth on mine after 7 hours! So on Monday they decided that they would start me on antibiotics. 

I have multiple severe antibiotic allergies so finding the right antibiotic to treat the right infection that I’m not allergic to is often tricky and it wasn’t until very late on Monday night that microbiology told the dr on call which to prescribe. They wanted to give me Vancomycin which I am officially allergic to but in the past have tolerated if it was given over a much longer period of time. I was happy with this as it had been used previously to treat a line infection but this time things didn’t go so well. 

Instead of it being given over 30 minutes it ran for 3 hours and almost straight away I started to get some itching around the cannula site. This progressed up my arm but because there wasn’t a rash I wasn’t too worried. I tried my best to ignore it but after 2.5 hours my whole body felt as if it were on fire and I had an intense urge to scratch everywhere. My skin was so hot and sore that the nurses had to put wet, cold towels all over me and get the dr to prescribe me an IV antihistamine. I noticed yesterday that my legs felt really sore and when I took my pj bottoms off I was shocked at what I saw...



The doctor thinks that the bruising is as a result of the scratching but I’ve never experienced anything like this. It’s so sore that it hurts when I’m lying in bed. Safe to say that I won’t be having Vancomycin again!

Yesterday they started me on 2 other antibiotics (no reaction to those luckily!) and they took repeat blood cultures. I’m not sure why and they’ve still not confirmed if it’s definitely a line infection or not. I’m pretty sure it is as I’ve had so many and how I’m feeling is typical of one. If it is confirmed that will be 7-14 days of antibiotics and possibly losing this Hickman line. The thought of having to go through another line insertion fills me with dread as the last one was so traumatic. The line I have now was only put in at the end of March and is my 12th one in 7 years. To put that into context some people can have the same line for 5, 10 years plus and every time a new line is inserted it creates scar tissue in the chest wall and damages the veins making future insertions more and more difficult. My worry is that at some point they won’t be able to put another line into my chest and then I will be looking at a femoral line which is in the groin. I’ve had a temporary femoral line in the past and they’re uncomfortable and annoying and not in the easiest of place to keep clean especially when you’re not always in full control of your bowels! 

So until they know one way or another whether it is a line infection the line cannot be used. This means I’m unable to be given my feeds so I’m relying on just fluids through a cannula. Not being able to eat or drink this will mean I won’t get any calories for the period of time my line is out of action- hopefully a bit of weight loss will be the silver lining! 

Sadly though because of a potential infection I wasn’t even allowed day leave to go home and celebrate my sons birthday with him. This absolutely destroyed me and I’m just so utterly fed up of being ill. Hubby came with the kids up to the hospital for an hour and brought all his cards and presents so I could watch him open them but it was horrible having to do it in the day room. It’s not the first birthday that the kids have celebrated in a hospital day room and it probably won’t be the last but it just makes me so mad that they have to. Kids should be carefree and birthdays should be one of the best days of their year but my illness even manages to creep in and spoil these days. Yes, I’m grateful that I could see him and that we had an hour together but watching him leave the hospital on his birthday knowing he would be at home without me was him was heartbreaking. 

Comments

Popular posts from this blog

Caravan wankers

Over the last few years when I was stuck in hospital for long periods of time Hubby and I would talk about what we would do if I ever got ‘better’. During some of those times when I was so, so poorly the idea of just being at home for more than a few weeks at a time seemed like a far fetched dream. But I’m currently living that dream! And obviously I know I will never ‘get better’ but for these purposes ‘getting better’ meant being well enough to be at home, not in pain 24/7 and not in bed all day, every day. Not too much to ask now is it??  So in our talks, once I was at home and was well enough to do the real basic things like watch Big Fella play football, Big Girl play netball, go to Tesco, play with the dog, go to the cinema etc one thing kept cropping up. We would love to have a motor home and tour round the country. We talked about the places we would like to visit, how much Buddy the dog would love it and how it would give us a chance to reconnect with each other.  But...

The light at the end of the tunnel is a train

Last week was a busy and pretty crappy week for me health wise. I had to go and have blood tests done with the nutrition nurses and I had two hospital appointments; one with the gallbladder surgeon in Nottingham and the other with colorectal surgeon at St Marks. I was hoping to have at least one surgery date to write in the diary following these appointments but I came home empty handed on both occasions. Here’s what happened.  I began noticing over the last few weeks that I’ve started feeling really crappy. I’m feel lucky to have been at home for the last 6 months and I have been the most well I have been for years but it felt like things had shifted slightly recently but I couldn’t quite put my finger on it. But years of being sick means I know my body and I can tell when something isn’t right. I have been feeling permanently exhausted and having way more bad days than good. I’ve gone back to spending 2, 3 or more consecutive days in bed, unable to do anything but watch tv and sl...

Trying to get vaccinated

When I was an inpatient recently I asked about getting the Covid vaccine because I’m classed as Clinically Extremely Vulnerable (ECV). Apparently other patients on the ward had gotten theirs but I was told that it wouldn’t be possible and that I would have to get in touch with my GP. Apparently staff within the hospital had been using the system to book vaccinations for friends and family by saying that they were an inpatient and as a result they were now only vaccinating staff who could show their ID badge.  I can understand that people are worried about the people that they love but to think that people abused the system in that way makes my blood boil.  So when I was discharged I rang the GP surgery and was told that they had absolutely nothing to do with the vaccination programme and that I would need to get in touch with NHS England. So I called NHS England and spoke to an adviser who told me that according to the system I wasn’t eligible for a vaccination. I explain...