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.
Sunday, January 11, 2015
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
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!!!!!!!
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
Thursday, November 20, 2014
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!
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!
Thursday, November 13, 2014
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.
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.
Tuesday, November 11, 2014
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.
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.
Saturday, September 27, 2014
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.
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.
Thursday, September 11, 2014
Hospital Admission... BORING!
As you will know from the previous blog post, I had one week to try really hard with Physio and DNASE until mum was home and I had to go back to hospital. So yesterday, I came back to the hospital and despite doing really well with my physio my lung function had dropped :(! My cough has been bad again and I was up on Monday night for about 3 hours so had to call into work sick on Tuesday.
So I have been admitted to hospital for some Iv's. I am on the usual Tobramycin and then 2 more different ones which means I have no idea how to spell them but I will give them a try haha... Teicoplainin and Meropenem. The Teicoplanin is 3 times for the first 24 hours and then it is just once a day after that. The Tobramycin is just once a day. And then the Meropenem is twice a day. So after today it means I will only have two IV times a day. All a bit confusing to understand but if you have CF you know the drift haha.
I'm hoping to only be in here until Friday after telling Dr.Ho I didn't want to be in at all, so he said maybe I could go home after 48 hours. So we will see. I've just had my morning physio and coughed up loads of crap (yuck!) and now I'm waiting for my lunch. Hospital food.. yum! NOT.
So I have been admitted to hospital for some Iv's. I am on the usual Tobramycin and then 2 more different ones which means I have no idea how to spell them but I will give them a try haha... Teicoplainin and Meropenem. The Teicoplanin is 3 times for the first 24 hours and then it is just once a day after that. The Tobramycin is just once a day. And then the Meropenem is twice a day. So after today it means I will only have two IV times a day. All a bit confusing to understand but if you have CF you know the drift haha.
I'm hoping to only be in here until Friday after telling Dr.Ho I didn't want to be in at all, so he said maybe I could go home after 48 hours. So we will see. I've just had my morning physio and coughed up loads of crap (yuck!) and now I'm waiting for my lunch. Hospital food.. yum! NOT.
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