Thursday, March 20, 2014

IV's Follow Up... More IV's :(

I went back to the hospital on Tuesday following up my last week of IV's on Teicoplanin. I had an early appointment at 9am as the clinic was closed but they allowed me to come anyway as that was what Dr. Higton had requested. Unfortunately, she wasn't there though as she had gone on maternity leave the previous morning and she has now had her baby. Congratulations to Dr. Higton on the birth of your little baby boy William!!

When we arrived Jackie came and did my obs and lung function. The lung function had increased back up to 61% which I think is good for a week of IV's! However, I didn't feel much difference after the week as I was still up in the night coughing some nights and I had coughing fits in the morning too.

Jo came in and saw me and was pleased that the lung function has improved and said to keep that and the DNASE up once a day until I'm feeling better. She said once I'm not feeling so bad to not worry about the DNASE every day and try every other day instead.

After that, I waited to see Dr.Ho but he didn't arrive before mum had to leave for an audit at 10am. So I was on my own for the rest of the appointment.

Once mum had left Dr.Ho arrived at about 10:15am and said that he wanted me on the Teicoplanin for another 2 weeks and Tobramycin and Ceftazidime. Which is rubbish news! He didn't even let me negotiate so I wasn't in the best of moods. He also said he wanted bloods done, knowing I only let mum take them, but she wasn't there. So I had to let Judith attempt to take them.

More IV's and some bloods meant I had to stay at the hospital for test doses and my arm to numb to have the bloods. This also meant I had to have my port needle changed otherwise it would be in for a total of 3 weeks. So Judith attached the Ceftazidime IV, put some Emla cream on my right arm (that's the arm where mum always gets the blood first time) and left me for half an hour as that is how long the IV takes to go through. I was so bored so resulted to watching Jeremy Kyle which I can't stand but there was nothing else on! Once the Ceftazidime was done Judith then swapped them over and attached the Tobramycin. Luckily I didn't have to have a test dose of Teicoplanin IV where I'd been on it for a week already, but I did have to attach it before I left the hospital. Once another half an hour had passed and the Tobramycin was done, Judith flushed that off and removed the port needle and applied more Emla to the port so that it would be numb for the new needle to go back in. She then did my bloods, she failed the first two times but where my arm was really numb and it was a small needle it didn't hurt too much although it is bruised now. Then once all the bloods were done I went to the car to get my Teicoplanin to attach once the new needle was in and got my sausage and mash ready meal for Jackie to heat up for me as I had to go straight to work after! After I had my lunch Judith put the new needle in which all went fine, then I was off to work after a very long morning!!

I drove back to work on my own which was scary as it was my first long drive on my own and I had to try to remember the way! I went the A30 though as I haven't been on the motorway just yet. Luckily, I got to work in the end around 1pm.

Since Tuesday, the IV's have been draining me right out. When the afternoon ones are done I'm half asleep and no energy where I've had so much pumped into me! Not good.

Work have been really helpful and decreased my hours again though so we shall see how I get on these next two weeks.

I've got to go back to hospital on 1st April after the two week course of IV's have finished. It seems like so long away where I'm on so many meds but hopefully we see a good result.

Night :) x

Saturday, March 15, 2014


Now you know what I mean when I said in the previous blog post I couldn't be admitted to hospital because I had an important date.

I had my driving test and I passed!

I didn't pass first time but I got there in the end so I'm overly happy that I can drive my car on my own. 

My test was at 10:44am so when I found out that good news I was able to go home and get ready for work and then drive myself there! I also then drove to Max's in the evening. 

On the way back home from Max's I stopped off to get some petrol and had a palava with the petrol cap! I couldn't seem to get the petrol cap back in and ended up asking two people for help after being there for atleast 15 minutes. The second person that helped was driving a Fiat 500 themselves so they showed me exactly how it fits back in and when to twist the key so I tried today and managed to do it first time thank god. 

I then drove to work on Thursday morning which was very scary and I did panic a lot but I got to work okay in the end! 

I've just got to get use to driving on my own and knowing the roads now but the more practise, the more confident I will be. I am so happy though! No more L Plates for me!

First lot of IV's for 2014

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.