Clinic and the dreaded iv's

So yesterday I had clinic at my hospital. I hadn't seen my team since I finished my iv's last time about 9 weeks ago. Thats a long time for me but I kind of forgot as ive been feeling ok since the last lot. The weather has definitely helped I always do so much worse through the winter. I was dreading having my port flushed as it had been so long but luckily it was fine! It was an eventful day to say the least as my sister needed a new picc line putting in. (We tend to go hospital together saves on petrol as its a 90mile round trip.) But she needed that doing at a different hospital so we parked at our hospital and jumped on the hospital hopper bus as parking is a nightmare at the Royal Infirmary. So after 2 attempts, 1 in each arm she has a shiny new picc and its bruised and sore. So we head off for the bus to go back to our hospital for our appointment. It was 32 degrees and we got on the wrong bus! So an hour later after going the wrong way and changing buses in the heat we made it back for our appointment.

Dissapointed with my blows. I feel  reasonably ok for how long ive gone but my blows wern't. They were at 37% from 46% after my last ivs. I knew I wanted to get iv's sorted today as there isn't as much room for error these days I did not want my blows to go down any more or I would struggle to get them back up again. Ive lost about 10% of my lung function from 18 months ago so im really on the ball at just doing them even if I dont want to. I had also lost 1kg in weight im now only 45.3kg so not happy with that. I must be back into the 'underweight' category when I spent so long to get me just into the 'normal.'

I really struggle with my iv's these days. Never had any problems until about 2 years ago but now I get very anxious and sometimes suffer panic attacks when on iv's but giving my first dose this time I was ok. I think im finally working through my fear and anxiety and its getting easier. It all started on a normal day when I went to the hospital as a day case to start iv's and finish the course at home. My nurse was giving my meropenum which I have regularly. All of a sudden I felt like I couldn't breathe. It was like a fat person was sitting on my chest I was unable to inhale. I was so scared I thought I was going to die. I had visions of them sticking a biro in my neck as a make shift tracheostomy like you see on the TV! Then all I remember is my sister started screaming/crying and was pulled out of the room. All the doctors and nurses came running in and got me on oxygen. I came around after this and started to feel like I could breathe again. It was bizarre if it had been an allergic reaction/anaphylactic shock I wouldn't have recovered without adrenaline etc. They were puzzled! I found out after that the reason my sister was crying and was pulled from the room was because I turned bright blue. Everywhere on my body I just went blue. It was like all the oxygen was gone scary stuff! Anyway after a blood test which eventually confirmed it wasn't an allergic reaction they found out it had happened to other CF patients in the surrounding hospitals using this certain new brand of meropenum. It has happened since and I can no longer have that brand. Well a long story short I was suffering from anxiety with everything that was going on in general life and hadn't really realised and this just pushed me over the edge. I started to have regular panic attacks whenever I felt scared/worried and whenever I had new medication. (Which is a right pain I can tell you when you have CF and take tonnes of medication to keep you alive.) I had CBT after to try and help me through my feelings and help me cope and it has done but was a very slow process. Im not cured I dont think I ever will be but I can manage it now.

So 1 day in and I feel terrible. Sick, tired and just not with it at all. Want to feel human again soon as I have a double date tomorrow with our friends to catch up before he goes to Afghanistan as hes in the army. And I am praying for nice weather as we want to have a bbq and a dip in her parents outdoor pool. (Not me I cant as my port is accessed boo.)

I am struggling to get up at 6am and do my ivs as im so tired. This is what I have to do 3x a day for the next 2 weeks. This was my breakfast at 6 this morning...

Also below is a picture of my port-a-cath. The device I have under my skin so that I can do my intravenous anti biotics. It is on my side about boob height so when not in use you dont even know its there at all.