My body is weird!

I started my IV's today, my friend came with me which was nice of her, she offered to come, I didn't ask or anything. My other best friend was going to come too but this morning she text me saying she had too much to do so couldn't come, she is going travelling around Australia for 6 weeks tomorrow and she is not very organised so I kind of expected this to happen!

Got to the hospital (after going in the wrong lane on way there and having abit of a panic) and went to my secret disabled space and there was a delivery van parked there! I kindly asked the man if he was planning on staying there and he said he would be 5 minutes, I then asked if he had a disabled sticker? No he didn't and said he would move as soon as possible. I told him could he move now as he couldn't park there and I was late for my appointment. He finally decided to move, idiot!

So did the usual stuff to start IV's, and can you believe it. My lung function is back up at 52%?! Crazy stuff. I'm still going on the IV's as obviously they are all ordered and delivered, plus I still have sore lungs and need booster as haven't had any for a few months now. The only reason I can think that this has happened is because I started my tobi nebs last week? Who knows?! my weight has gone down to 55.6kg so the dietitian wasn't too pleased, I told her my appetite is abit funny and I am only eating stuff worth eating i.e. really nice stuff like curries etc. I didn't have any tea last night as there was nothing worth having and I've started sacking breakfast off. She says to have skandishakes when I don't feel like eating (these are high calorie milk shakes, about 600 calories per milkshake I think, they are delicious!), just so I don't lose anymore weight and it becomes a problem.

Because I have never had meropenem before I had to have my first 2 doses of it at hospital which meant I had to go back 6 hours later which I wasn't too pleased about, no-one told me I would have to do that! When I weighed myself when I went back for my second dose, my weight was 56.2kg, probably something to do with the fact my friend and I went to TGI Fridays for lunch and I ate loads, doctors orders! So I'm not really that concerned about my weight, they do like to make a fuss about nothing sometimes.

I slept most of the afternoon, that first dose of IV's always hits me hard. Not sure if I'm going to like this meropenem, the nurse made it look really easy making it up but when I had a go it took me forever! I'm having meropenem 3 times a day and tobramycin once a day which takes an hour to go through the eclipse, if you don't know what an eclipse is, look at my older posts from when I had my IV's last year and I explain what one is there and I think there are even pictures! Its basically ready made for me to use and is like a balloon that goes down and so pushes the drug into me. I might post some more pictures this time around but can't be bothered to do it today, too tired! xx

busy day! (well for me)

Well I realised I didn't explain what a port is so i'll go into abit more detail, its a device under the skin that is some sort of metal with silicone on the middle. The needle goes into the silicone bit. It has a line that goes into the main artery that goes into your heart. I cant really find a decent picture of one! But here is one, I think mine is like the one at the bottom but I can't be sure as I can't see it as it is under my skin!


Can't wait to finish my iv's on wednesday, then I can get a decent shower as when the needle is in I have to try not get the port wet which is harder than it sounds! I get baths as it's just easier. I got up at 6 today to do my first dose of iv's as I was going out at 2pm to go shopping and needed to fit my second dose in before then and the iv's have to be a minimum of 6 hours apart (from when the previous dose finished, not when it was started). Here is a picture of my little drug corner i've set up to do my iv's


heres a pic of what I need to do them. I have a big syringe with saline in to flush the line (the needle is just to suck the saline out of the bottle, I don't put it in me), the smaller syringe has hepflush in it to put in at the end of each dose, this is to thin the blood to prevent clotting (I think!). The ballon thing is an eclispe, this contains the antibiotic and pushes the drug out and the ballon decreases in size until it is flat and then I know it has finished. I have 2 eclipses each dose as i'm on two antibiotics,they take about 20 minutes each. Theres only one on the picture as I had the other attached to me. The eclipses arrive all ready done as does the hepflush, its only the saline I have to sort out myself.


So today I took Alfie for a little walk, luckily it started raining just after we got back! Then I had lunch which consisted of a packet of quavers and a mars bar icecream, I couldn't be bothered to make anything proper. I don't like lunchtimes, there is nothing decent to eat! Then I did my 2nd dose of iv's and went shopping for Petes present with my mum. I can't say what I got him incase he reads this! But lets say it cost more than I was planning to pay, but it should be worth it. We then went to buy Petes present from my mum and get cards etc. by this point I was really tired and started feeling abit zombie like, so I bought a muffin to eat to try keep me going! It was not a very nice muffin, muffins should be moist, this was crumbly and hard on the outside! I then had to quickly drop my stuff off at home and go to Scope to meet my new mentee for the voluntary work I do, I was there about an hour and had a coffee to keep me alert lol as I still felt zombieish. When I say I feel zombieish I mean I feel tired and have no energy to think or be bothered about anything, I don't really care about anything because it takes too much effort and I kind of let the world go by, you may find me staring into space or looking abit lost. Hence why I call it being like a zombie, im there but not really.....just going through the motions.

So anyway came home wrapped Petes present, just had my physio and now waiting for Pete to come home whilst watching the soaps. Im quite tired but I think i'll be able to cook tea, i'm doing curry yummy! I will sleep well tonight anyway! Adios