Rambling and finished my ivs

On Friday I went back to the hospital to see my team. I had finished my ivs the day before but just as I finished them I literally had a stuffy nose and really sore throat! I now have a dry tickily cough and pray it doesn't go to my chest as I really cant cope with more ivs at the moment! So typical that it happened the day I finished rather than why I was on them so they could help protect my chest if it was to go there.

I had my needle taken out. I always love when it comes out as I can have a lovely bath fully immersed in the water. I the did my blows which I was disappointed in. When I started 2 weeks ago my lung function was 37% and it only went up to 40% on Friday. I feel like I did all those 2 weeks of hard work and feeling yucky on my ivs and its hardly done anything. I usually get back upto about 46% post ivs. I know 6% doesn't seem like much but when your lungs are damaged as much as mine 6% means a lot to me! I cant help it my team always tell me not to focus to much on the numbers but I am a numbers girl. They say to go on how you feel which didn't help on this occasion as I felt like crap still. I am so annoyed about it id worked really hard during my ivs to walk the dog round wicksteed park and back home which is most walk I usually do and was managing it ok. I was proud of myself for doing it and did it a lot during the course so was really hoping for good results. Some times it feels like no matter how hard I try, no matter how much I take all my medication and do exercise, it just doesn't help. My lungs will do what they want and give up on me when they are ready which is a scary prospect. I am hoping my low lung function was down to me having something viral and will pick up next time.

There is a new drug in the pipeline which will help me as its for use in people who have the double DF08 Cystic Fibrosis gene which I do. A drug came out recently in the UK called Kalydeco for people who had a different mutation and has had some great results. This will work the same as Kalydeco for people with my faulty gene. I have put a lot on this as it could help me and potentially slow down my decline if it works for me. It is still in research phase but they are now recruiting for people in the UK to take part in the trial. I need to get in on this but they are not doing it in my hospital damn! Hopefully if it works it will come out quickly. There is some really exciting stuff in the pipeline for CF at the moment and hopefully they can go on to find something which can help all the CF mutations eventually.

Not much else to report haven't had anything amazingly exciting going on since my last post. Neil went away to Scotland for a week on a boys biking holiday so I was home alone for the week. I did well walking the dog all week by myself and we did a few good walks. Was great exercise for me. He is still a bit naughty at times and had me pulling my hair out a few times! But he is also great for cuddles especially when feeling down and poorly and it always makes my day and cheers me up.

Dexter my doggy. (Excuse my foot in the pic we were having cuddles!)

I am also off to Birmingham with Neil next weekend we've got a hotel for the night and are going to Cadbury World, Warwick castle and off out in the eve for dinner and drinks so looking forward to that. Hope I feel better by then!

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.