Infection update

In between yesterday’s games of Uno one of the oncall doctors came to see me. As a general rule seeing a doctor on the weekend is not a good thing cause it usually means you’re either a) really poorly or b) about to get bad news. I didn’t feel poorly so wondered what he’d come to see me about. He said he’d come to update me on my infection and I breathed a sigh of relief cause it’s only a line infection, right? 

Er, turns out it’s not that straightforward. 

Usually line infections are caused by bacteria and are treated with IV antibiotics through a cannula and also going directly into the line, known as a line lock. This is what has been happening over the last couple of days but on Saturday one of the nurses dropped into conversation that microbiology had just called and they wanted another drug to be given which was an IV antifungal medication. I don’t think she expected me to pick up on the fact it was antifungal and seemed quite surprised when I asked her outright if I had a fungal infection in my line and/or blood. The only reason I did was that I had a fungal infection many moons ago when I was in St Marks so the drug name was familiar. Er, yes the blood cultures have grown fungus again she told me. Again? AGAIN? Nobody had told me that they had even been grown once!

This seems to explain why I’ve had 4 lots of blood cultures taken in 6 days when usually one or two maximum is used to diagnosis a line infection. They must have grown the fungus and needed to repeat the bloods to make sure it wasn’t just a contaminated sample. Now fungal infections are nasty. They are much, much more serious than a bacterial infection and the reason for the Echo scan of my heart on Friday the dr told me yesterday. Apparently the fungus can ‘seed’ itself in other parts of your body and cause terrible complications. One of the places they can seed is the heart, hence the scan, which although looked normal will have to be repeated to make sure it’s still ok. The other place it likes to seed is the eyes. The dr told me that I would need to have a scan of my eyes to make sure it’s not in my retina and I’m not going blind. What the actual fuck!? 

Now I’m not a squeamish person; I’ve learnt over the years to tolerate being prodded and poked and after having bowel disease for over 14 years and 2 kids I’ve lost most (if not all) of my dignity. But eyes make me feel sick. I can’t look at eyes, have never been able to help the kids get eyelashes out, have to look away when adverts for glasses come on the tv and seeing someone about to put contact lenses in or out makes me retch. I hate having my eyes tested and having the puff of air freaks me out and takes the opticians a ridiculous amount of attempts before it’s done successfully so the thought of going and having eye drops put in and them doing stuff to my eyes makes me feel physically sick. I’m not sure I can do it but the thought of going blind isn’t overly appealing. If your vision goes blurry or your eyes get sore today you must let us know straight away, the dr told me, because then it’s an emergency and we can’t wait. Oh, and your line will need to come out, he added as a bit of an after thought. Apparently they wanted to run it by Dr B the gastro consultant before pulling it out (er, thank you very much) 

but if I developed a temperature or started vomiting then it would be done immediately as an emergency. To say the doctor shit me up was the understatement of the year! 

So then this morning I get an early wake up call at 6.30am from one of the surgical doctors (he clearly wasn’t aware of the 9.30am rule!). He had come brandishing a consent form for the removal of my Hickman line clearly expecting a compliant patient willing to scribble on the dotted line straight away. He wasn’t prepared for the word No. I told him I wouldn’t consent to the procedure before speaking to the gastro consultant on this mornings ward round because I wanted to find out if there was any chance of the line being saved. He went on to tell me that the line had to come out and that I needed to sign the consent form but I stood my ground and he ended up making a hasty retreat. 

Monday’s are the big ward round where the gastro consultant comes round, trailed by his registrar and multiple junior doctors in differing stages of their careers, along with the ward sister and the dietician. I finally got the chance to find out exactly what’s going on and get all my questions answered. Here goes: I definitely have a fungal infection in my line and my blood which they’re treating with IV antifungal medication. I also have multiple bacterial infections in my line and my blood which are being treated with IV antibiotics and an antibiotic line lock. As a general rule, if you have a fungal infection the Hickman line has to be removed but I questioned whether there was any possible way of saving the line. Dr B said normally they would say no way but he said he would go back to microbiology and find out if they thought it could be done without increasing the risk to my eyes and heart. He knows that my access is getting more and more limited and that each line insertion is getting more traumatic so he understood why I wanted to keep the line if it was safe to do so. He confirmed the need for my eyes to be checked but said he wasn’t sure if I needed another Echo so soon and that he would get in touch with the cardiologist to find out. 

He asked about my pain and I told him that it had generally settled down but was really bad last night because I had had something to eat. Because the line cannot be used when it’s infected and TPN can’t go in a cannula I’m not being fed. When I have my feed I don’t feel hungry but without the feed I’m suddenly starving. I know that eating will cause me pain but yesterday I was just so hungry I didn’t care. Dr B said that they would look at getting a Picc line inserted (which is a central line like a Hickman line but it goes in a vein in your arm instead of your chest and is for short term use).

I would be able to have my IV meds and feed through the Picc line and wouldn’t need stabbing multiple times a day for a cannula. The thing is I’m not overly keen on Picc lines. I’ve had 2 in the past and neither of them have lasted longer than 24 hours. The first one got infected and had to be removed and the second was pressing on a nerve and they took it out pretty sharpish cause I was threatening to pull it out myself as the pain was unbearable. 

I also had an appointment at the Treatment Centre this morning with the gynaecological team so straight after the ward round I was dressed and gone. Luckily the treatment centre is next door to the main hospital so it only takes 5 minutes to walk there. I was supposed to be getting the results of the Dexa scan I had a couple of weeks ago and to have my Decaceptyl injection to keep me in menopause and control the endometriosis symptoms. Unfortunately the consultant hadn’t reviewed the scan report and was on annual leave so it meant the nurse wasn’t able to give me the injection. So I’ve got to go back in 10 days to see the consultant in clinic and then hopefully get jabbed in my bum!