Each blog post goes from good news to bad news with my health by the looks of things! So as the last one was a bit of good news, it's back to the bad news again!
Since my last appointment back in January, I seem to have gone down hill again. The cough hasn't been great since then; I've been waking up in the night having coughing fits, wake up in the morning and have the most horrible coughing fits and coughing up loads of gunk and my chest has been tight. I've also just been feeling rubbish in myself with no energy and constant tiredness.
Since December my shifts at work have become a bit longer to try and get me back up to my contracted hours, but I seem to find my long days quite difficult and too much sometimes. On 26th February, I got sent home from work as my chest was really tight and I had no energy what so ever. I ended up going home and having a 3 hour nap! That's longer than a granny nap!! I then went back to work the next day and had no energy again but 10am (I only started at 9am)! So it was back home and to bed for me again. Mum thought it could be a sign of diabetes as I have been drinking so much at lunch times (one 500ml bottle and two capri-suns!) so she rung the unit to try and get me an earlier appointment. There was no answer so she left it until the Friday and I was feeling fine again so she said we'd leave it as my appointment was soon anyway. Anyone with CF knows you randomly feel okay one day then rubbish the next! I wasn't feeling my best the week after but my appointment was soon anyway, so I kept drinking energy drinks whenever I felt low.
My appointment was on Tuesday at 11:40am. I got ready in the morning and put emla cream on my port as I was expecting IV's anyway and if not the port needed a flush. Mum then drove us there.
When we arrived Rhada did my obs and lung function. The lung function had dropped back down to 51% which was 10% less than last time. But I could tell from the coughing, weezing and tight chest that it wasn't going to be great. Luckily, the weight was stable though.
I saw Jo first and explained to her that the cough has been really bad lately, I also admitted that me and mum hadn't been doing my physio daily either. She explained that I needed to do it (which I know but anyone knows it's boring) and do my DNASE as I hadn't done that in ages. She also mentioned if I had been doing the back stretches for my back pains and I admitted that I actually hadn't had the pains in ages but I think it was because I haven't been sat on the floor at work much lately, because I've been sat on my rug tonight doing my party invites and my back is really hurting!
Brenda then came in to flush the port but I told her not to worry yet incase I needed IV's.
After this, the dietician came in and spoke to me. I'm so bad I still cannot remember her name... next blog post, I'll know it! She was pleased that my weight had stayed the same but I told her about not having energy and that I feel a little better when eating or having an energy drink. She told me about these new liquid supplements that she had got hold of so gave me some of those to try instead of an energy drink or food as they'll help me to gain weight quicker. They are called PROSource and there's 100 calories in the little 30ml packet! Mum said it's basically like pouring calories down your throat haha! I'll admit I haven't yet tried them as I hate every single other supplement that I have tried and I've tried them all!
Dr.Higton then came in and I explained to her that I had been feeling rubbish. Straight away she said IV's but I told her I couldn't be admitted as I had an important date the next day which you will read in my next blog post! She wanted me to be on Teicoplanin so she went to look if Calea homecare did ready mixes of them, which they do so that was good. So I'm on Teicoplanin IV once a day for a week, then I've got to go back to hospital next Tuesday to see if there's any improvement and if there's not I will then be on Ceftazidime and Tobramycin for 2 weeks. Rubbish!
So far I'm not feeling any difference being on the Teicoplanin but it has only been 4 days. If anything it makes me feel stressed and fed up. I always see to get like this when I'm on IV's though. We'll see how the next few days go though and I'll update you next Tuesday.