February IVs

Back on the 9^th February I had a hospital appointment following up from my January appointment. You may remember reading from my previous blog post that I had been up in the night coughing quite a lot so Dr. Higton told me to double up my dose of Omeprazle as it was most likely to be acid reflux. Since doing that, the coughing in the night stopped but my cough in the day has been very productive and I have been coughing lots. So at the hospital I was expecting the lung function to be lower than usual.

I arrived about 11:15am and mum met me there straight from work before her afternoon clinic started. When I arrived Jackie did my obs and I did my lung function. As I was expecting, the lung function had dropped to 50% which is quite low for me. Therefore, I was expecting IVs. Judith came in and saw me and asked how I was feeling and I told her I wasn’t feeling great. She said “Do you think you need IVs?” and I said “yes but I’m not staying in” and she told me they didn’t have any beds free anyway. (Thank god! Haha)

Charissa came and saw me first and wasn’t too concerned about my weight as it was stable to last time. However, I explained to her that I had been having some stomach troubles so she gave me a food diary to complete over the next few days where I include what I’m eating and how many Creon I am taking. She said Dr Orchard may want an X-Ray to see if I’m blocked up.

When Dr Orchard came in, we spoke about my stomach troubles first and he said after reading my notes and speaking to Charissa that the Omeprazle change of dosage would have had something to do with it because it stops the Creon dissolving as fast which would explain my stomach pains. But he would like an X-Ray to see if there is a blockage. Charissa also came back in and told me to change my Creon-fat intake to 9g. So to take 1 Creon capsule per every 9 grams of fat I eat.  Dr Orchard and I then spoke about my lung function and agreed that I would need some IVs for two weeks. He also said he didn’t want me going to work because technically I should be staying in hospital where the lung function is so low but he knows I will do all the treatment. But he wanted to see me one week into the IVs and if my lung function hadn’t improved he would then want me to stay in the hospital. So once all this was discussed, Jackie took me down to the X-Ray department to have my X-Ray. In the meantime mum had to go to work.

Once we were back at the CF Unit, Judith came and accessed my port and started up my test doses. Then she went to contact Calea to get the home IVs delivered. However, they don’t deliver until 48 hours after ordering so she had to call pharmacy to order all of the medication so that mum could draw up the IVs for the first 48 hours until the delivery arrived. The test doses took about 2 hours as Dr Orchard prescribed me with 3 different Ivs; Meropenem, Tobramycin and Teicoplanin. Then I waited for the pharmacy to bring the drugs up to the unit.

Since being at home mum and dad have been really helpful, getting up at 6am and doing all of the morning IVs and I have tried really hard with the physio and done it twice a day to cough up as much as I can. Then I went back to hospital last Monday and was so happy with the result..

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My lung function was 70%!!!! It had improved 20% in just a week! IVs and hard work really do pay off!!! Because the result was so good Dr Orchard said he didn’t need to see me. So I just saw Charissa and Jo and then it was home again.

The IVs finally finish tomorrow evening and the one thing I am excited for is a proper bath!! I haven’t been able to have a proper bath as I can’t get the port wet. So I have been having to shower my hair first and then have a shallow bath afterwards.

I am also back to work on Tuesday which I can’t wait for. You’re probably thinking who wants to go back to work, but when you have been at home bored for 2 weeks and you enjoy your job you will want to go back!

I then have hospital again on Thursday at 2pm so I will wait and see what the result is then. Who knows, maybe the lung function is even higher!!

Hospital Appointment- 9th January

I had hospital on Friday which is my first appointment since 28th November. 6 weeks without having to call them to be seen earlier, that's good for me. 

However, I have had this horrible tickley cough for about 2 weeks now where I have been waking up every night coughing for over an hour but it's just a dry cough and nothing comes up. So annoying! I have been a bit more productive in the day than normal too but have been doing lots of physio to shift it all and cough it up. 

I drove myself up for my appointment at 11:30 as mum was working. So it was my first appointment on my own. I didn't mind though. When I arrived Jackie did my obs and I did my lung function. Surprisingly my lung function was at 68%!!! It hasn't been that good without ivs or oral antibiotics for a ages. So that was a good start despite the cough. Charissa came and saw me after, my weight had dropped a little but she wasn't concerned as it wasn't a huge amount.

Dr.Higton came to see me and I was happy to see her because she's been off work since January last year on maternity leave with her little boy. She said I was looking really well and was very happy that I have stuck at my physio since the last time I saw her. I explained how I had been feeling and the cough had been keeping me up at night. She explained that it is most likely to be acid reflux if nothing is coming up when I cough so told me to double my dose of Omeprazle and to take it just before bed and hopefully that will sort it out but it may take a few weeks. Then to keep up with the physio to carry on bringing up as much sputum as I can. That was a good result for me as I was expecting to be told I would need some Iv's, so I'm glad the hard work with phsyio kept the lung function up.

Jo came and saw me last and was pleased I was keeping at the physio and that the lung function hadn't dropped. Then Emy came and flushed my port and I was ready to go home. 

Hopefully the Omeprazle fixes the cough and it has sorted itself by my next appointment on the 9th February. Otherwise, Dr.Higton said it may be that I need some Iv's.

First Post Of 2015

Although I'm about 10 days late... HAPPY NEW YEAR!

Wow its been ages since I last blogged, woops! Looking back on the last time I blogged on 20th November, I was poorly so Dr.Orchard prescribed me with Steroids and Chloramphenicol. Well when I went back on 28th November they had worked the trick and my lung function was in the 60's and I was feeling great. So I dodged the Iv's. Yay!

December was an exciting month. At the beginning of the month me and Mum went to Cornwall and stayed at Granny and Robert's house for a few days. We arrived on Saturday 6th. On Sunday Granny had organised for us all to go for a Carvery which was lovely. There was Me, Mum, Granny, Robert, Auntie Al, Uncle Viv, Uncle Jas, Auntie Kirsty, Uncle Col, Uncle Zac and my cousin Isla. The meal was really nice and it was good to see everybody. 

We then did a bit of shopping, saw Kharis, Joe and Miley on one of the days and then when we had seen everyone we went home again on the Tuesday.

On Friday 12th December Me and Max went to Winter Wonderland in London and stayed the night in Thistle Kensington Gardens. Our hotel room was really nice and they gave us a free upgrade to a room price which is usually £380 per night!! At Winter Wonderland we went in the Ice Kingdom and saw lots of different sculptures all made out of ice. They were really cool to see but it was freezing in there so we didn't stay for long. After that we went and got some chips and looked round the markets before our next session which was ice skating. Usually when I've been to Winter Wonderland in the past I take my own ice skates but I didn't this time and their skates are hockey ones so I couldn't skate very well where I've never used hockey ones before! It was still fun though and we had a laugh trying to not fall over! After skating we went to the ice bar, we had to wear big ponchos and thermal gloves to keep warm where it was so cold in there. The lady said it was about -12 in there! We had a free cocktail each in cups made out of ice which tasted amazing!

The next day we decided to leave our bags at the hotel and go and do a bit of shopping. Big mistake when we aren't used to London being that busy! I think we went in about 5 shops and decided after queueing in M&M world for 45 minutes that we'd had enough and wanted to go home. It was a lovely few days and got me in a Christmassy mood!!

 

 

 

 

 

 

Then it was Christmas!!!!!!!

(I wont write loads otherwise you will still be here reading this in 2016!)

Christmas day was spent at our house and Grandma and Grandad joined us. We all got up and did stockings first in mum and dad's room like we have done for every Christmas I can remember. Then once we'd had our breakfast we opened presents!

I got some lovely things! Mum and dad got me a Michael Kors Watch, some leather boots, a blue fur coat, mittens on a string, Elsa collectible doll, many of my Disney dvds to add to the collection, Olaf pyjamas, Minion pyjamas and lots of other things.

Abbi got me some of my Disney dvds, Minion Monopoly, Topshop Voucher and she also did me a stocking full of presents.

George got me a pandora charm and Tinkerbell collectible doll.

Grandma and Grandad got me Anna collectible doll, Soap and Glory stuff, Shoe phone holder, sweets.

I was spoilt!!!

In the evening Adam (Abbi's boyfriend) and his sister and mum came round. We had a games night and all played thoughts and crosses game and The Chase. The day flew by!

Boxing day we went to Uncle Tim and Auntie Selina's house for a buffet and to exchange more presents. And ofcourse to play more games!!

Then on the 27th I went to Max's house and spent the day with his family. Max got me some amazing presents. All white leather Timberland boots, Olaf (stuffed with love by Max at the Bear Factory), Ariel collectible doll, Marc Jacobs Honey Perfume and a stocking with more presents in too.

I had a lovely Christmas but it was over so quickly.


New Years Eve I spent with Max and his family at their party in Bramley which was a really good night. Considering I didn't know many people I enjoyed myself.

I will stop typing on this post now before it turns into a 5000 word essay!!

Happy new year x

Lung Function Drop and Weight Loss

After being off of work most of last week as I was feeling rubbish, mum rung Judith last Friday and got me an appointment to be seen on Monday.

So on Monday, me and Mum went to the hospital for my appointment at 10:30am. Unfortunately, it wasn't the best news.. my lung function has dropped a massive 20%, not to the lowest its been, but it's never just dropped that much in one go. Also, my weight has dropped half a stone since I was last seen in September. This confused me and mum as I have been eating the same, except the last week due to being poorly, so don't understand how it could have dropped that much.

Emy came in first and gave my port it's regular flush to stop the line blocking. And then I told her that I hadn't been feeling my best and also explained I had been having random shakes at random times of the day over the past few weeks. I told her that I had been checking my blood sugars regularly and they had all been pretty normal so I was a little confused. Around this age, CF patients usually are diagnosed with CFRD (Cystic Fibrosis Related Diabetes) so I think maybe mine could be on the way. Emy said that could explain the big weight drop and the shaking although if the blood sugars showed normal results she didn't really have an answer. She went to see the diabetic doctor who told me to just carry on taking my blood sugars for the next two weeks and see if there is any change.

Jo came in and saw me and suggested I up the physiotherapy treatment to twice a day to get the lung function back up and to stop me waking up every night having coughing fits. She said to carry the DNASE on as normal, so do that about 45 minutes before physio. Then for the second lot of physio, inhale half of the hypertonic saline through my pari-boy machine and then put the other half into the chamber that I use for my Bipap (physio) machine rather than just putting the whole dose into the Bipap machine as it will get to my chest quicker and hopefully bring up more sputum.

Charissa, the dietician, came in after and was also concerned as to why my weight had dropped so much. She told me to keep a log of my blood sugars and what I am eating and try to eat more than usual over the next two weeks. She was upset as she knows how hard I have worked with my eating to get my weight up to where it was.

Dr Orchard came in last and also had no answer for the shaking if the blood sugars are normal. He said "you like to be a challenge don't you?" haha. He suggested going on some iv's to try and get the lung function back up and to shift this horrible cold I have. But I didn't want to jump straight into iv's as I had them less them two months ago. So I asked for some oral antibitocs to try first. Mum asked him what he thought about Prednisolone (Steroids) as I suggested them as they usually make me eat a lot as well as shift infection. So he prescribed me with those for one week and also prescribed me with an antibiotic called Chloramphenicol which I am on for two weeks. Hopefully, with these steroids, antibiotics and lots of physio my lung function will improve. Failing that, I will have to go back on iv's. I have an appointment to go back to the hospital on 28th November, so I am going to try and work hard with my physio until then. Fingers crossed!

Still feeling rubbish

I went back to work yesterday thinking that I would be feeling okay. But I felt really poorly again. I have got a cold and it has gone straight to my chest and made my whole body feel rubbish. So I'm off again today to get some rest.  

It's hard to describe how you're feeling when someone asks why you're not feeling great. Unless you have Cystic Fibrosis I guess you don't understand what I mean. But one day you're feeling absolutely fine and then one morning/evening or anytime in the day you'll just start to feel rubbish again. I hope this cold shifts itself pretty soon so I can feel fine again and get back to work. 

November update.

Its been nearly 2 months since I last updated!! Probably because I've not been to the hospital since my last update. I haven't been feeling too great the last week. I have been up every night with chest pain and terrible coughing fits which has left me feeling over tired most days despite going to bed earlier than usual. Sunday and yesterday I wasn't feeling 100% and went to bed last night with a horrible headache. I woke up this morning coughing up loads of rubbish again, my head still killing and had a fever. So I haven't been to work today and have spent the day in bed. Hopefully going to bed early tonight will help and I will be able to go to work tomorrow.

I have also had really random shakes at random times over the last month. I have been checking my blood sugars and they have all been normal so it's a bit confusing. Every time mum says she will ring the hospital tomorrow, the shakes stop! This week so far it hasn't happened, touch wood, so we will have to see.

I have a hospital appointment on 25th November but if I'm still not feeling great mum will ring and change it.

Hospital Discharge and IV Follow Up

Since my last post where I said I was hoping to be sent home on the Friday, I ended up staying until the Monday as I had a temperature all day on the Thursday. On the Sunday, 14th September, Rhada took me to do my lung function and it had improved right up to 70% YAY! So I expected to be going home on Monday with a result as good as that. 

On Monday, after I had my breakfast, meds and physio I went home to go and get my hair dyed... Brown! I have brown hair. It was a big shock at first as I've always been blonde but it has grown on me now and I like it. While I was at home, Judith phoned and said Dr Orchard was happy for me to go home and didn't need to see me but I had to go back to collect my things and have my last lot of IV's for the day as the home delivery wouldn't arrive until Tuesday.

Since then, I have done well with physio, mum and dad have really helped out with the ivs and my lung function is at 74%! That's probably the best it's been in about 3 years. I am so happy. Jo and Dr Orchard were both really impressed as well and have said I don't need to be seen for 2 months providing I stay well. So I am keeping up with the physio and can get back into my swimming now the port is no longer accessed.