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Line infection- what it's REALLY like

After the 'excitement' of Monday, Tuesday was a bit quieter. I was kicked out of the side room in the afternoon into A bay. I didn't really mind because although it's nice to have your own room and loo I much prefer being with other people and having a chat. There's a sense of comradery in a hospital bay and everyone keeps an eye out for each other. 

In the morning they gave me antibiotics into my Hickman line and it gave me the rigors. These are when you feel as though you're freezing cold, you shake, teeth chatter etc. Doesn't sound too bad?? It's horrible. Your whole body is convulsing almost and you can't get warm even though quite often you have a temperature of 38 degrees plus. Your muscles ache from the cramping and spasming- you feel like you've just run 10km!

This lasted an hour and afterwards I was completely exhausted. I slept on and off all day as I hadn't slept much Sunday or Monday night. I also realised that the wifi on the ward was now up and running so I was able to watch Celebrity Masterchef on the iplayer. It's the small things!

I saw Dr8 and the new junior doctor that has joined Dr7's team- she will be known as Dr16. Dr16 is lovely. Young, blonde and bubbly you can't help but like her. But she's a good doctor too. They said that they would speak with Dr7 and see whether he thinks the Hickman line needs to come out. 

I was worried that if the line was removed they would struggle to get another one in. The doctor that put my last Hickman line in said there's a lot of scar tissue on my right side and the veins on the left side are, shall we say, crappy. So I would prefer to keep the precious line in if at all possible but will have to just do what they think is best. 

Tuesday evening Dr16 came to see me to say that the initial lab results were back and there is definitely an infection in the line. No shit Sherlock! But now they have an idea of the bug they stop one lot of antibiotics as the microbiology team have said it's not good for the bug I have. In a few days we should know some more specific info in the bug and may even be able to identify where it has come from. 

I was due to have my IV fluids Tuesday night but the night nurse said it hadn't been prescribed properly so we had to wait for the on call night doctor to sign the drug chart. They eventually started them at 1am and they ran for 12 hours so I was hooked up by the line in my neck until after lunchtime on Wednesday. I feel like a dog on a lead with the drip trolley attached to me neck! Walkies! Woof!

Wednesday started uneventfully, with me watching the worlds smallest bedside TV (the 500ml water bottle is there to give you a sense of scale) and dozing. 


That was until around 3pm when the nurse gave me another antibiotic dose down my Hickman line. Within about 15 mins I started to feel cold and get shivers. I decided to walk to the day room to fill up my hot water bottle but as I started walking I started to shake so violently I nearly fell over. I made it as far as the nurses station, which is about 10 metres from my bed and by this point I could barely walk or speak. 

Two nurses got me on a commode (they use these on the wards like wheelchairs) and wheeled me back to bed. They called the sister over who sent them to fetch blankets and the obs machine. 

The rigors were ten times worse than the time before. My whole body hurt. Every muscle was contracting, cramping and spasming even my jaw and my eye muscles were twitching. My hips hurt the most though as my legs thrashed about uncontrollably. 

A pile of blankets were placed on top of me but I still felt cold so one of the nurses went to full up my hot water bottle as I hadn't made it. When she came back she saw that my lips had turned blue as I couldn't breathe properly. It felt like the muscles in my throat and neck weren't working properly. They tried to do my blood pressure but I was shaking about so much that they couldn't get a reading. But the obs did show that my heart rate had almost doubled and my saturation levels (how much oxygen is in the blood) was falling. 

One of the nurses went to call my doctors while the sister got the oxygen out. It was the nose one where a little tube goes up each nostril and it hooks over the ears to stay on but because of my rigors she found it so hard to get it on and ended up scratching my ear. 

Now I was starting to feel very unwell. I still had the rigors but now my temperature was rocketing. I was sweating under all the blankets and suddenly I felt really sick. I started throwing up just as Dr8 and Dr16 came round the curtain. I covered all my notes, my bed, the blankets and even caught a bit of Dr8's shirt. 

The rigors had begun to stop but were now replaced by this severely high temperature, a difficulty breathing and my body throbbing as a result of the convulsing and the temperature I now had. 

They increased the oxygen but then I passed out. From this point on it all goes a bit hazy but I know I kept passing out, that I was sweating buckets and that they had to call the crash team because my heart rate was all over the place and my breathing so laboured. 

I was put onto an ECG machine, the nose oxygen tubes replaced by an oxygen mask, the blankets stripped off me, fan found and on full blast while they tried to get a cannula into me although I don't know why when I have the central line. 

There were around 10 people gathered round the bed- doctors from the crash team, nurses, my doctors. There was a hive of activity but I just remember one of them saying 'try to breathe slowly' and me thinking that I couldn't and that I was going to die. I started hallucinating (through the high temperature and lack of oxygen they later told me) and Dr8 said I was saying "it's my boys birthday, I have to go"!

They started pumping fluids and paracetamol into me and also gave me a sweet gel thing because my blood sugar had fallen so low. As they brought my temperature down I started to feel a bit better and my breathing became less laboured. 

I can't remember much more other than them asking if they should ring Hubby and me saying no because he would worry. I also had the driest mouth and a raging thirst on me and kept saying that I needed an ice lolly. I must have been quite insistent as in the end Dr16 went to the shop to buy me one!

I was told to stay in bed and rest as my body would be completely exhausted from the episode. I wasn't going to argue!



Early evening and Dr8 returns with Dr7 in tow. "We need to take the line out" Dr7 tells me. "When?" I ask. "In about half an hour". Bloody hell. 

Suddenly my mind starts spinning and unfortunately it all tumbles out of my mouth...

If you take the line out then how will I get my fluids? You said you would struggle to get another line in so if you can't I will end up with a picc line. Then I can self care and will be reliant on the nurses again. It's Big Fellas birthday in 10 days. I need to be home for that. If I don't have a line, I can't go home with a central line can I? This will be the 3rd year in a row I've spent his birthday in hospital. It's not fair. 

Dr7 stares at me, probably thinking I'm cracking up and need to see the psych doctor! He tells me that the most important thing is to get me well. And that right now that involves me having the line out. Tonight. He plans for me to have my IV fluids through the central line but wants me to go fluid free at the weekend. 

What?

No fluids?

He wants to see if I can cope without IV fluids, because if I can then I won't need another Hickman line. Now that sounds amazing but I have visions of me withering up and looking like a shriveled prune by Sunday night. 

As much as I want to be Hickman line free it is like a safety net. If I'm feeling dry or the weathers been hot then I can have extra fluids. If I don't have a line then what will I do? If I get dehydrated will I yo-yo in and out of hospital to get fluids? Or will miraculously my bowel start working properly and everything will be hunky dory? 

One day at a time Nat, Dr7 tells me, interrupting my thoughts. And I guess he's right. 

The two doctors nip off to whip out someone else's Hickman line in another bay and then they're back in no time. Here I am, the last time I will have a Hickman line (fingers crossed)


Dr8 has the job of scrubbing up and actually removing the line. Dr7 is there to supervise. Dr8 lays a sterile towel over my chest and lays out some of the instruments he's going to use. "Your surface isn't flat" he tells me.  No Dr8 it won't be. That's because I have breasts. Last time I looked I wasn't a surgical trolley!

A centimetre or so above where the line comes out my chest, there is 'the cuff'. This is part of the line under the skin and is made of special material that binds to the tissue to stop the line from skipping out. Dr8 has to find the cuff and cut the tissue away from it to enable him to then pull the line out. 

This is quite fiddly and takes time, skill and patience. This is all done under local anaesthetic, which stings like hell when they put it in, but I'm awake and can see it all happening. I find it fascinating. I know some people would throw up! It took about 20 minutes to do and all the while we are all chatting. I even have the Australia/Netherlands match on for Dr8 to watch while he's cutting away. Maybe not the best idea- if there was a goal I could end up being sliced by the scalpel accidentally!

Once the line is out it needs 3 stitches. I learn from Dr8 that the suture thread comes in different thicknesses. Number 1 is the thickest and used to see up abdominal muscles for example. Number 6 is used for sewing up blood vessels. Imagine how thin it must be. My stitches were a number 3 incase you're wondering. 

After it's all done they let me have a look at all the bits they've taken out. Here's the cuff that I was talking about...



And this is the tip of the line that was right down near my heart. They will send this off to the lab to see what bugs are in it. 


And here are the scissors and tweezers they use. They are disposable I'm told. What! Such a waste. Do you want them? Dr7 asks me. Yes I do. Don't throw away perfectly good stuff. They'll be great for my sewing!!!



And here I am, line free. 


It seems very strange and I keep going to feel for my line and then remember it's not there. I still do that with my Stoma bag. Even after 6 months. I wonder how long it will be before I stop doing it?

After the sharps are put in the sharps bin, the waste in the offensive waste bin and the scissors in my bag I skype mum and dad. That's the great thing about the ward having wifi. I'm able to keep in touch with my family, FaceTime the kids and not have to worry about going over my internet limit. So I settle down to watch another episode of celebrity masterchef on the iplayer and try to get some sleep after my 'busy' day. 

NB x









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