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

I PASSED!


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.

Sunday, February 02, 2014

A Good Hospital Appointment :)

On Friday I had a check up at the hospital. Mum took me for me appointment at 11:40am. 

When we arrived, Jackie came and did my obs and lung function. The lung function was at 61% which we were really happy with although it could be a lot better. But I was expecting it to be lower. From looking at my December blog post I noticed the lung function was at 58% after the ivs anyway so it wasn't much of an improvement, but at least it hadn't dropped. Most CFers read their lung function in litres, but I've been so used to reading the percentage when I was younger that I understand that rather than litres so sorry if you're confused what I mean when I say percentage instead. Me and mum have been really good with keeping on top of the physiotherapy and doing it nearly every day, which is a big difference to the arguments and nagging which resulted in us not doing physio at all before.

After I saw Jackie, the dietitian came in and spoke to me about my eating and weight etc. We have a new lady that has just started and she's lovely. I'm so rubbish with remembering names though so when I do remember her name I'll talk about her using her name next time rather than 'the dietitian' haha. She was really happy with my weight as I had managed to put on 1 kilo since my last appointment so was still maintaining that 50kg mark! We spoke about my daily eating regime which she was impressed with and said it was the ideal diet for a CFer, so that's something to be proud of. Eating loads of crisps and chocolate and being told what you're doing is ideal. Mum said 'that's my ideal diet as well' haha as if. I bet many people wish that was theirs. I hadn't been taking my Fortisip supplement shakes as they're not particularly enjoyable if I do say so myself. But the dietitian wasn't annoyed as I still managed to gain weight, so she said it would make her happier if I managed to fit in one more of my Nesquik milkshakes a day as I much prefer these than the Fortisip and that I try to drink more flavoured drinks during the day. I told her this was hard as at work we are only allowed water due to being around the children, but work are always really helpful so I'm sure they wont mind.

Dr.Higton came and saw me shortly after. She was happy that me and mum had been doing the physio and was pleased that the lung function hadn't dropped! Finally, an appointment where I'm not put on any ivs or more tablets. Instead, I've just got to come back for another check up in March.

Lately, I keep having more problems with my upper back than usual. I used to get this because of my Scoliosis, but since they've signed me off it seems to have got worse. I spoke to Dr.Higton and said to her I get this mainly when I've been sat on the floor with the children at work. She said it's probably nothing to do with the Scoliosis and is because I haven't been sat with a straight posture for a lot of the time so Jo would come and see me to show me some stretches and if they didn't help then Dr.Higton would look into it further. Jo, the physiotherapist, came and showed me some stretches to do on a low back chair that should hopefully help my back. So we shall see how I get on with those this week. Fingers crossed they work.

At the end of my appointment Judith came and flushed my port. This is just a quick flush with saline every 4-6 weeks to stop the port line from blocking.

The appointment went well and I'm happy. I just need to keep up with the physio and nebs now to try and shift this cough and improve the lung function further!

This month the Cystic Fibrosis Trust is 50 years old. They've achieved so much in the first 50 years but have not yet completely beaten Cystic Fibrosis. So instead of celebrating the first 50 years, they are working harder to help reach the day of beating Cystic Fibrosis so that we can receive treatments to transform our daily experience allowing us to live a long satisfying life. So when everyone with Cystic Fibrosis can celebrate their 50th Birthday is when the trust will celebrate.  They have set up an event called 'No Party' where people can blow up their no party balloon to show their support in beating Cystic Fibrosis.


Please help support the trust by blowing up your No Party balloon at 

cysticfibrosis.org.uk/no-party 



Have a good afternoon :)

Sunday, January 19, 2014

London Outing

I haven't done a 2014 blog post yet! So happy new year and I hope January has been great for everyone so far.

Last weekend Max treated me to a day out in London as we'd been together 1 year. It was a great day!




We got the train to Waterloo from Basingstoke at 11am. Unfortunately, it was so busy and all 10 coaches were full! There were not even single seats next to strangers, so we had to sit on the floor the whole way there. We arrived at Waterloo at around 12:15 but it felt like a lot longer due to sitting on the floor.

We then walked to the Aquarium but went for a Mcdonalds first. Max had a good start to the day when he opened up the Mcdonalds bag to find that they'd given him 2 chicken legends so he got 1 free! It was so busy in there that 2 different workers must have put a chicken legend in the bag without checking! 






We got to the Aquarium at around 1, just when it started to get busy, but we didn't have to queue as Max had pre booked priority tickets so we skipped all the waiting! We spent about two hours in the aquarium and we were both so fascinated by everything! We saw lots of different fish (obviously), penguins and watched the sharks being fed! It was good to do something different than Basingstoke for once.







































After the Aquarium we stopped off for a drink before getting the tube which was funny. Max had never been on the underground before and I've only ever been with mum so wasn't exactly sure where to go. So we got our tickets on the machine and ended up buying a day travel card instead and then asked a lady which line to get on to go to Leicester Square. We got to Leicester Square fine but by this time my feet were absolutely killing me as I stupidly wore my new trainers which ended up being too small and crushed my toes. We had a look at some restaurants so we had an idea for dinner and then went to Oxford Street. We didn't end up doing any shopping except getting me some more shoes to wear from Topshop which hurt my feet even more.

We ended up heading back to Leicester Square for some dinner as we were both tired. We went to a place called Muriel's Kitchen which was nice, the food was lovely. Most places were really busy but we got here just before the queues started which was lucky. I had a meatball dish which I really enjoyed and Max had a spicy pizza. We then had milkshakes afterwards which was yummy too!



Monday, December 30, 2013

Christmas

I've been a little slow on updating because my hospital appointment was on Christmas Eve last week so we were busy preparing for Christmas after.

Mum took me there for my appointment at 9:40am. First I saw Jackie and she did my obs and lung function. Unfortunately, even after two weeks of Iv's and physio I still had a cold and the lung function had only improved by 9% so was up to 58%. So I was expecting to have my Iv's extended for another week.

Dr. Ho came in a while after and spoke to me about my lungs. He said the Iv's are obviously not clearing the infection and are just making my lungs less infected when on Iv's but as soon as they finish the infection fights back again. He said Iv's may not always be the best for an infection and it could simply be to do more physio and try and fight it. So instead of an extension on my Iv's, he stopped them and told me to go back to my Bramitob instead of the Promixin in my puffer. Then everyday an hour before physio, to do my DNASE nebuliser and when I do my physio treatment he told me to use hypertonic saline in the BiPAP machine instead of normal water. I wasn't happy about this as hypertonic makes me loose my voice but I agreed to try it anyway. 

After my hospital appointment, mum took me back to work but I was only working until 4 as we closed early for Christmas.

When I got home from work on Christmas Eve, I had a really bad headache and my voice went all croaky! I couldn't blame it on the hypertonic saline as I hadn't even started it yet. So I took some tablets and tried to feel better as we had people over for Christmas drinks. Once I had the last dose of Iv's, mum took the port needle out and I went and had a bath as I still wasn't feeling well. Any CFer knows how good it feels to be able to have a proper bath once the port needle is out! After my bath, everyone had left so the five of us watched some telly and then went to bed ready for Christmas.

CHRISTMAS

On Christmas morning, for the first year ever, we didn't get up early! I woke up at 8am but mum said the night before we weren't getting up until 10am. So I went back to sleep, although I heard mum up anyway but I couldn't be bothered to get up haha! At about 9:45am I had been awake for a while so was about to get up when Abbi texted me anyway asking if I was awake. So we got up, woke George up and took our stockings into mum and dad's room to open as we do this every year. In my stocking I got make-up, Shake Away milkshake vouchers, Disney trivia game, chocolate and lots of little bits. Then once we had done our stockings, we had to get three Disney trivia questions correct each before we could go downstairs.

Before opening our presents, I did my puffer and we all had some breakfast. By this point it was about 10:30am haha! Usually we are all done opening by then! I got lots of cool presents; hair dryer, katie price book, clothes, perfume, ted baker bag, ted baker bath set, Tinie Tempah Demonstration signed vinyl, sweets, Disney CD, Just Dance 2014, Pyjamas and lots more. Then we did our main presents and I got a gold Iphone 5S!! I was spoilt! Thanks Mum and Dad :D.

We then showered, tidied away all of our presents and had our roast turkey dinner which was lovely!! After this we played games all evening which ended up going on until about 12:30am!

On Boxing day we had the family and boyfriends round; Grandma, Grandad, Uncle Tim, Auntie Selina, Chloe, Adam, Max and Adam (Abbi's boyfriend). George was working until the evening so Ben didn't come round either. Before all the family arrived I did my presents with Max and he got me my birthstone Pandora ring and lots of other little bits which was lovely. Then when the family arrived it was lunch and then more games! Including Just Dance, Table football and then back to the board games! It was a great day but over so quickly!

On Friday, I booked it off work so spent the day with Max. We went shooping in Basingstoke Sales in the morning which was a bit of a disaster as we didn't really end up buying anything! Then we went back to his for the afternoon/evening and spent it with his family

I had a great Christmas and Happy New Year to you all!


Sunday, December 15, 2013

Less than 2 months!

I haven't even been off of Iv's 2 months and I'm back on them again! Brilliant :(! 

On Tuesday I had an appointment at Frimley at 11:40am. So mum came and picked me up from work and drove us there. I was already feeling rubbish and had been since the weekend as I have a cold, plus my cough hasn't been great again so I was expecting my lung function to be rubbish. But that was also because I have not been doing physio as much as I should be.

When we arrived Jackie did my obs and my lung function. Like I say I was expecting my lung function to be rubbish but was very shocked when my results read just 49%! That's the lowest it's ever been. Mum said the cold probably didn't help that but still I wasn't happy and knew I'd be told I needed Iv's.

When Dr.Higton came in and saw me she said straight away that she thinks Iv's would be the best option to get me well for Christmas. (Just in time though as the Iv's would finish on Christmas eve!). But I didn't want to be on more Iv's after less than two months. So she said we could try some orals for a few weeks and if they don't work I would then have to have Iv's anyway. But mum was saying how she was off work for the next 10 days so I may as well have the Iv's now as she will be at home to help me. So I decided to go with the Iv's although I was not best pleased about it. I told Dr.Higton I didn't want to be on lots of antibiotics though as I wanted to still be able to go to work and last time it tired me out being on more antibiotics! So I've got Ceft twice a day and Toby once a day which isn't to bad as they can be done at 6 in the evening so no late nights and 6 in the morning which means I can still go to work.

Once I had my first dose of each antibiotic, I rung work and told them I was on Iv's again and they said to not worry about coming back until tomorrow as it was already 3 o'clock, so me and mum went home.

On Wednesday, I woke up feeling rubbish because of this cold. So mum rang up work and said I wouldn't be in after all. But they were fine with it and have shortened my hours while I'm on Iv's.

So me and mum have been back on the physio to get my lung function up again and hopefully these Iv's shift this cold in time for Christmas day!