Sunday, 6 April 2014
Easter holidays
It can be hard to explain to someone how it feels when your lungs aren't quite playing ball. Right now I feel as though I'm in some sort of bubble and each day it's getting smaller and smaller as my lungs get tighter and tighter. Hopefully that bizarre imagery will make some sort of sense with a few of you! I barely slept last night and the past few days I've just not stopped coughing - that, teamed up with a really tight chest and plenty of crackles, just kept me up for hours despite being shattered. I did wonder if it was the Sahara dust and pollution that was over on Thursday but that's all gone now and I'm still feeling rough breathing wise. I've got a cold so keeping an eye on things for the next couple of days..I just really don't want to have to spend the Easter holidays on IVs but then at the same time I don't want to end up very poorly! I know I've got to ring Judith on Monday to book myself in for a port flush & I know if I go I'm sounding like this they'll mention IVs so I'm hoping it all clears up by then.
Guess what! I've finally been out driving in my own car - I know I've had it for quite a while but I ended up having three months off driving lessons as I kept getting sick. It's such a comfortable car to drive (a Mini Countryman). I'm back having lessons at the moment but hopefully will be able to take my test soon so I can start getting myself places rather than feeling bad for relying on lifts all the time!
Easter holidays mean two weeks off :-) (for those who don't know, I work in a school for children with Autism) I don't have much planned, just a few lunches out, visiting places, seeing people. It's nice just not having to worry about setting an alarm for work and doing what you fancy. Let's see if these lungs sort themselves out because feeling like you're going to collapse every time you cough is wearing a bit thin! Have a lovely Sunday :-)
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Monday, 24 March 2014
Organ donation
Nobody can prepare you what it's like when someone dies, nobody can explain how it actually feels.
This past month there have been a lot of CFers gain their angel wings, the latest being the gorgeous Kerry Thorpe. Kerry was 23..what sort of age is that for somebody to die? She fought so so hard but unfortunately her body was tired of fighting. Her story is so inspiring and is exactly why you need to sign up to the organ donation register - get your family doing it, get your friends doing it, get anyone. I know it's been said a million times but you don't know when you or a loved one will need an organ.
I know people are busy and I don't expect you to give up hours of your time. But please, just sit there for one minute and really think hard. Imagine being in so much pain, unable to do anything, fighting so hard and wishing your second chance at life would come. Now think about the other perspective - your world being torn apart as you've seen your partner, parent, sibling, friend, go through agony for so long to then reach the end with no organs available, there's nothing anyone can do and you're left without them in your life.
I know that is blunt and horrible to think about but this is the reality of things. This is why it is vital you sign up to become an organ donor AND let your loved ones know you're wishes. People with rare blood types find it even harder to get organs so if more people sign up then surely there's more chance of them getting a match.
You can choose to donate any of the organs on the list, all of them or just one or a few. The more the better but the choice is yours. I've signed up on the internet and it genuinely only takes 2-3minutes to complete.
If one person signs up and two people who sign up who each tell another two people then hopefully it will get more and more people becoming organ donors. I know it's not nice thinking about what you want to do at the end of your life but just think that you could be the person that somebody thanks and thinks of everyday because your lungs, kidney or liver have saved their life.
It's really hard to cope when you hear that another CFer has passed away. Even if you didn't know them personally it hits home, especially if you've been following their story. It makes you think about your friends who are already up there, think of that person and their battle, think about their families who must be going through hell right now and to be honest once all the sadness has eased you think about your own mortality. I never really considered it much as a kid, I was pretty healthy with no major issues so why would I? When I was very very sick a couple of years ago I wasn't sure how much longer I'd be here for..that thought did cross my mind a lot laying that hospital bed on o2 and unable to barely eat, drink or talk as I didn't have the breath in me. Now I'm on Kalydeco I'm doing much better than that, however I still have rough patches and sometimes I do sit there and just wonder what is going to happen in the future - will I need a transplant? Will I become really poorly again anytime soon? But seeing as I can't see the future, however handy that may be, those questions will just be unanswered until a later date so it's pointless thinking or worrying at the moment!
It really helps that there's a big CF support group and when someone does loose their battle we do all chat, make sure each other are okay and offer support for those closest to the person.
Please sign up to become an organ donor and share this link with others
https://www.organdonation.nhs.uk
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This past month there have been a lot of CFers gain their angel wings, the latest being the gorgeous Kerry Thorpe. Kerry was 23..what sort of age is that for somebody to die? She fought so so hard but unfortunately her body was tired of fighting. Her story is so inspiring and is exactly why you need to sign up to the organ donation register - get your family doing it, get your friends doing it, get anyone. I know it's been said a million times but you don't know when you or a loved one will need an organ.
I know people are busy and I don't expect you to give up hours of your time. But please, just sit there for one minute and really think hard. Imagine being in so much pain, unable to do anything, fighting so hard and wishing your second chance at life would come. Now think about the other perspective - your world being torn apart as you've seen your partner, parent, sibling, friend, go through agony for so long to then reach the end with no organs available, there's nothing anyone can do and you're left without them in your life.
I know that is blunt and horrible to think about but this is the reality of things. This is why it is vital you sign up to become an organ donor AND let your loved ones know you're wishes. People with rare blood types find it even harder to get organs so if more people sign up then surely there's more chance of them getting a match.
You can choose to donate any of the organs on the list, all of them or just one or a few. The more the better but the choice is yours. I've signed up on the internet and it genuinely only takes 2-3minutes to complete.
If one person signs up and two people who sign up who each tell another two people then hopefully it will get more and more people becoming organ donors. I know it's not nice thinking about what you want to do at the end of your life but just think that you could be the person that somebody thanks and thinks of everyday because your lungs, kidney or liver have saved their life.
It's really hard to cope when you hear that another CFer has passed away. Even if you didn't know them personally it hits home, especially if you've been following their story. It makes you think about your friends who are already up there, think of that person and their battle, think about their families who must be going through hell right now and to be honest once all the sadness has eased you think about your own mortality. I never really considered it much as a kid, I was pretty healthy with no major issues so why would I? When I was very very sick a couple of years ago I wasn't sure how much longer I'd be here for..that thought did cross my mind a lot laying that hospital bed on o2 and unable to barely eat, drink or talk as I didn't have the breath in me. Now I'm on Kalydeco I'm doing much better than that, however I still have rough patches and sometimes I do sit there and just wonder what is going to happen in the future - will I need a transplant? Will I become really poorly again anytime soon? But seeing as I can't see the future, however handy that may be, those questions will just be unanswered until a later date so it's pointless thinking or worrying at the moment!
It really helps that there's a big CF support group and when someone does loose their battle we do all chat, make sure each other are okay and offer support for those closest to the person.
Please sign up to become an organ donor and share this link with others
https://www.organdonation.nhs.uk
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Thursday, 20 March 2014
Big update!
Sorry I haven't blogged for quite a while - I just feel like I've been so busy with one thing or another for the past month that there are so many things I need to get done and not enough time to do them all. Quite a few various things to mention and update you on!
1. In half term (I work in a school for children with Autism for those of you who don't know) I had another stomach blockage so spent the week at home feeling crap. The first day it started the stomach pain was excruciating - I was just in a pile on the floor in tears and just couldn't move because of the pain. We debated A&E although I have medication for it in the house so I wasn't too sure what else they could do for me so took some of the meds and painkillers & had an early night. Not exactly what I wanted although I suppose at least I didn't need to have any time off work.
2. My bedroom is finally finished - I absolutely love it! It was definitely worth the wait and the saving :-) Massive thank you to my Dad who helped paint it, build the furniture etc.
3. Last week I had my annual review follow up appointment. It was okay although it could have been better. My lung function and weight have dropped although I'm not too worried about that at the moment - just hoping it doesn't continue to fall. Dr Higton said my vitamin D levels are VERY low and despite being on two tablets for it already they're going to add in a third to see if it helps and repeat bloods in three months. If there's not change there are other treatments they can use. Due to this my bone health has suffered and my latest Dexa scan showed Osteopenia which means my bone density is getting low. Apparently you can't really get the density to go up much once you've lost it although with exercise plus the extra vitamin D tablets it can either stay stable or increase a little bit.
I've never suffered with my kidneys but Dr Higton has said that the latest blood tests show that they're leaking and are starting to show signs of wear and tear! Unfortunately the diabetes and the IVs both can damage your kidneys so there's not much I can do about it apart from keeping an eye on it with blood tests and then adding in a treatment plan if they get worse.
Other issues were discussed and things sorted out.
4. My lovely friend Sammie got married! It was a wonderful day and she looked beautiful - I did get a tad emotional as she walked down the isle and when her hubby made his speech! So here's a big congratulations to Mr & Mrs Fletcher :-)
5. I currently sound like a 50 year old smoker - feeling okay in myself but my cough just sounds awful and in the evenings I'm getting very tight chested & temp is up..I'm keeping an eye on it for a few days in case it's just plugs moving around but if I start to feel poorly or my breathing gets worse I think a trip to the hospital will be in order - trying to see if I can make it till the Easter hols in case I need IVs but hopefully this'll just quieten down.
This weekend I'm off to see London Irish play Bath (rugby) for the St Patrick's day match - I can't wait!
Have a lovely weekend :-)
1. In half term (I work in a school for children with Autism for those of you who don't know) I had another stomach blockage so spent the week at home feeling crap. The first day it started the stomach pain was excruciating - I was just in a pile on the floor in tears and just couldn't move because of the pain. We debated A&E although I have medication for it in the house so I wasn't too sure what else they could do for me so took some of the meds and painkillers & had an early night. Not exactly what I wanted although I suppose at least I didn't need to have any time off work.
2. My bedroom is finally finished - I absolutely love it! It was definitely worth the wait and the saving :-) Massive thank you to my Dad who helped paint it, build the furniture etc.
3. Last week I had my annual review follow up appointment. It was okay although it could have been better. My lung function and weight have dropped although I'm not too worried about that at the moment - just hoping it doesn't continue to fall. Dr Higton said my vitamin D levels are VERY low and despite being on two tablets for it already they're going to add in a third to see if it helps and repeat bloods in three months. If there's not change there are other treatments they can use. Due to this my bone health has suffered and my latest Dexa scan showed Osteopenia which means my bone density is getting low. Apparently you can't really get the density to go up much once you've lost it although with exercise plus the extra vitamin D tablets it can either stay stable or increase a little bit.
I've never suffered with my kidneys but Dr Higton has said that the latest blood tests show that they're leaking and are starting to show signs of wear and tear! Unfortunately the diabetes and the IVs both can damage your kidneys so there's not much I can do about it apart from keeping an eye on it with blood tests and then adding in a treatment plan if they get worse.
Other issues were discussed and things sorted out. 4. My lovely friend Sammie got married! It was a wonderful day and she looked beautiful - I did get a tad emotional as she walked down the isle and when her hubby made his speech! So here's a big congratulations to Mr & Mrs Fletcher :-)
5. I currently sound like a 50 year old smoker - feeling okay in myself but my cough just sounds awful and in the evenings I'm getting very tight chested & temp is up..I'm keeping an eye on it for a few days in case it's just plugs moving around but if I start to feel poorly or my breathing gets worse I think a trip to the hospital will be in order - trying to see if I can make it till the Easter hols in case I need IVs but hopefully this'll just quieten down.
This weekend I'm off to see London Irish play Bath (rugby) for the St Patrick's day match - I can't wait!
Have a lovely weekend :-)
Monday, 17 February 2014
Dear Body..
A little note to my body..
Why is it that every time I get a break from work, all be it a half term holiday, Christmas or summer, I am ill? I know you spice it up a bit with some variety - crappy lungs, a stomach blockage, a cold, migraines, a weird IV/tablet reaction or even all of the above! However, it really is not appreciated. I work bloody hard and I would quite like to enjoy the time I get off rather than spending half of it, if not all of it, poorly with one thing or another.
Please sort it out - thank you :-)
Two days ago I had the worst blockage pain ever, debated a&e as I was on a heap on the floor in tears unable to move but after a while it started to ease so I thought I'd try and wait until Monday so I could talk to my team. Luckily today it's a lot better, still an awful stomach ache and I'm not wanting much to eat but the pain is more manageable.
Now that's all done and dusted I can finally move on to some good news - I am finally redoing my bedroom! Dads doing most of the work for the moment as it's stripping the room, plastering, sorting out & radiator bits and bobs but I'll help once it gets to the painting and decorating :-)
I've chosen some lovely wallpaper for one of the walls, paint on all the rest. Hopefully within a couple of weeks it will all be completed and I can move back in there - I'm in the spare room for the moment.
I'll pop up some pictures once it's all finished :-)
It's half term this week so a week off from work, spending the first half at home with this blockage but hopefully by the middle of the week it'll sort itself out so I can at least enjoy the last half of the week!
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Why is it that every time I get a break from work, all be it a half term holiday, Christmas or summer, I am ill? I know you spice it up a bit with some variety - crappy lungs, a stomach blockage, a cold, migraines, a weird IV/tablet reaction or even all of the above! However, it really is not appreciated. I work bloody hard and I would quite like to enjoy the time I get off rather than spending half of it, if not all of it, poorly with one thing or another.
Please sort it out - thank you :-)
Two days ago I had the worst blockage pain ever, debated a&e as I was on a heap on the floor in tears unable to move but after a while it started to ease so I thought I'd try and wait until Monday so I could talk to my team. Luckily today it's a lot better, still an awful stomach ache and I'm not wanting much to eat but the pain is more manageable.
Now that's all done and dusted I can finally move on to some good news - I am finally redoing my bedroom! Dads doing most of the work for the moment as it's stripping the room, plastering, sorting out & radiator bits and bobs but I'll help once it gets to the painting and decorating :-)
I've chosen some lovely wallpaper for one of the walls, paint on all the rest. Hopefully within a couple of weeks it will all be completed and I can move back in there - I'm in the spare room for the moment.
I'll pop up some pictures once it's all finished :-)
It's half term this week so a week off from work, spending the first half at home with this blockage but hopefully by the middle of the week it'll sort itself out so I can at least enjoy the last half of the week!
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Sunday, 26 January 2014
Annual review
It's that time of year again, annual review time. On the surface everything seemed to go pretty well! Lung function was around 2.3l which I was surprised about and my weight is still stable.
Even better news, it turns out I've grown a cm since last year, haha did not expect that at all! (Still a bit of a short arse though!)
Had all the usual chats with the physio, dietician and everyone. Nearly ended up in a&e doing the step test as me (being the eegit I am) slipped off the step..luckily I managed to regain my balance before I landed on the floor! I did chat to the physio about my back as I've had bad back pain a lot lately. She thinks it's due to the fact my hamstrings are sooo tight and then I'm coughing which makes the middle of my back tight so the lower back is compensating for it all. She gave me a few exercises to try and help but if not she can refer to a different physio.
One bonus this year is I didn't burst in to tears when we had to have the hard talk - I could see Brenda didn't like asking the questions. I don't think anybody wants to think about you being at end stage CF, but chats have to be had. They ask you about transplant, if you'd want one etc, plans for end of life care - stuff I do think about, especially when I'm ill, but I'm never that worried about me, it's more about how everyone else will feel. I find that with cf, I'm more worried about how it affects everyone else emotionally and physically more so than myself.
Other things were discussed & luckily I had an X-Ray two weeks ago as I was having awful chest pain so didn't need another one - nothing showed up on the previous one as being a major issue so we think the pain may have been plugs moving around.
I'll be waiting the next few weeks for sputum and blood results to come back but I don't think I'm growing anything bizarre!
I was only there for about 3 1/2 hours, not bad really. Maybe it's just me but I always find it tiring, mentally and physically, so I had nice long sleep and a cake when I got home!
Everything seems to be okay at the moment, got a bit of a sore throat & headaches going on! I bought this gorgeous pillow mist from Champneys, ever since I've been sleeping a lot better, it smells incredible!
There are no words to explain how much I love my Mum. She comes to every appointment, is always there for whenever I'm down and knows just what to say. It's the little things too like sending me a little quote or having a surprise cake for after work. She stays up all night with me when I'm poorly, helps with my IVs, makes me laugh when I can't find a reason to laugh & is just all round amazing :-)
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Even better news, it turns out I've grown a cm since last year, haha did not expect that at all! (Still a bit of a short arse though!)
Had all the usual chats with the physio, dietician and everyone. Nearly ended up in a&e doing the step test as me (being the eegit I am) slipped off the step..luckily I managed to regain my balance before I landed on the floor! I did chat to the physio about my back as I've had bad back pain a lot lately. She thinks it's due to the fact my hamstrings are sooo tight and then I'm coughing which makes the middle of my back tight so the lower back is compensating for it all. She gave me a few exercises to try and help but if not she can refer to a different physio.
One bonus this year is I didn't burst in to tears when we had to have the hard talk - I could see Brenda didn't like asking the questions. I don't think anybody wants to think about you being at end stage CF, but chats have to be had. They ask you about transplant, if you'd want one etc, plans for end of life care - stuff I do think about, especially when I'm ill, but I'm never that worried about me, it's more about how everyone else will feel. I find that with cf, I'm more worried about how it affects everyone else emotionally and physically more so than myself.
Other things were discussed & luckily I had an X-Ray two weeks ago as I was having awful chest pain so didn't need another one - nothing showed up on the previous one as being a major issue so we think the pain may have been plugs moving around.
I'll be waiting the next few weeks for sputum and blood results to come back but I don't think I'm growing anything bizarre!
I was only there for about 3 1/2 hours, not bad really. Maybe it's just me but I always find it tiring, mentally and physically, so I had nice long sleep and a cake when I got home!
Everything seems to be okay at the moment, got a bit of a sore throat & headaches going on! I bought this gorgeous pillow mist from Champneys, ever since I've been sleeping a lot better, it smells incredible!
There are no words to explain how much I love my Mum. She comes to every appointment, is always there for whenever I'm down and knows just what to say. It's the little things too like sending me a little quote or having a surprise cake for after work. She stays up all night with me when I'm poorly, helps with my IVs, makes me laugh when I can't find a reason to laugh & is just all round amazing :-)
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My 21st!
I celebrated my 21st birthday at Pennyhill Park - an evening of champagne, canapés and cake! And what better excuse than your 21st to wear a full length sequin dress? ;) my lovely friend Charlie came down from Manchester to come to my party so we spent the whole weekend together which was fab!
I'm so lucky to have such thoughtful, caring, loving and amazing family and friends :-)
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I'm so lucky to have such thoughtful, caring, loving and amazing family and friends :-)
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Tuesday, 31 December 2013
Happy New Year
A quick post to wish you all a happy, healthy & wonderful 2014 :) thank you to everyone who has read, shared & commented on my blog this year, I really appreciate it.
2013 has been full of highs and lows. I started the year off very poorly but then Kalydeco came in February which is fabulous! I've become closer to some very special friends, made some wonderful memories, had a couple of hospital stays and some IVs mainly in the past 5 months but stayed positive nevertheless, carried on with my job which I love and enjoyed just being with my family, friends and boyfriend.
2014 will start with my 21st birthday celebration on the 3rd and my actual 21st birthday on the 9th! Then a Kalydeco review plus my annual review towards the end of the month. Fingers crossed for good results with that and then lots of friends 21sts coming up plus a friends wedding too in March!
I hope you all have a fab evening tonight - I'm spending it with two friends and all of our parents with lots of yummy canapés and champagne! Let's hope that 2014 brings lots of exciting things!
Lots of love xx
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2013 has been full of highs and lows. I started the year off very poorly but then Kalydeco came in February which is fabulous! I've become closer to some very special friends, made some wonderful memories, had a couple of hospital stays and some IVs mainly in the past 5 months but stayed positive nevertheless, carried on with my job which I love and enjoyed just being with my family, friends and boyfriend.
2014 will start with my 21st birthday celebration on the 3rd and my actual 21st birthday on the 9th! Then a Kalydeco review plus my annual review towards the end of the month. Fingers crossed for good results with that and then lots of friends 21sts coming up plus a friends wedding too in March!
I hope you all have a fab evening tonight - I'm spending it with two friends and all of our parents with lots of yummy canapés and champagne! Let's hope that 2014 brings lots of exciting things!
Lots of love xx
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Friday, 27 December 2013
Christmas
A quick blog post today just to say I hope you all had a lovely Christmas! It was so nice to have an IV free Christmas! I finished my course of IVs on the 23rd - there's nothing like cutting it fine!
Christmas is about spending time with everyone who is special to you & I certainly did that. Was so lovely to relax! Now I'm in to planning for New Years & my 21st!
I have two friends and their parents over for New Years with me & my parents so I'm making a list of yummy canapés to eat! And a week today is my 21st celebration! I am beyond excited :) then on the 9th January is my actual birthday! So lots of more exciting things to look forward too and to get sorted.
Last night I barely got any sleep as at 1am I woke up and my right lung at the top at the back was just agony if I breathed deeply, coughed, sneezed or anything. All day today it's been hurting so much too, I've never had chest pain like this so has been a slight worry. I phoned the cf unit and Judith said it does sound like a collapsed lung but I'm not particularly breathless so we decided it probably wasn't that & painkillers and rest would be a good plan and to ring if it gets any worse. This evening I can't tell if I'm slightly breathless or if I'm just panicking and even though I've had painkillers it's not changed. I'm so reluctant to go to a&e unless I have to so as long as it doesn't get any worse I'll stay like this and ring Judith again on Monday - or if it could just go that'd be amazing!
Fab news though! My friend Emily who I mentioned in my last blog receiving her double lung transplant was allowed home for Christmas! She has had to go back in but I spoke to her today and she said she's hoping to be out next week, I have everything crossed for her! It has been so lovely to get snapchats from her without her having O2 on! Please keep her, her family and her donor and their family not your thoughts :)
Oh and if I haven't said it enough times SIGN UP TO BECOME AN ORGAN DONOR! Make it your New Years resolution to give up two minutes of your time to potentially save peoples lives one day
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Christmas is about spending time with everyone who is special to you & I certainly did that. Was so lovely to relax! Now I'm in to planning for New Years & my 21st!
I have two friends and their parents over for New Years with me & my parents so I'm making a list of yummy canapés to eat! And a week today is my 21st celebration! I am beyond excited :) then on the 9th January is my actual birthday! So lots of more exciting things to look forward too and to get sorted.
Last night I barely got any sleep as at 1am I woke up and my right lung at the top at the back was just agony if I breathed deeply, coughed, sneezed or anything. All day today it's been hurting so much too, I've never had chest pain like this so has been a slight worry. I phoned the cf unit and Judith said it does sound like a collapsed lung but I'm not particularly breathless so we decided it probably wasn't that & painkillers and rest would be a good plan and to ring if it gets any worse. This evening I can't tell if I'm slightly breathless or if I'm just panicking and even though I've had painkillers it's not changed. I'm so reluctant to go to a&e unless I have to so as long as it doesn't get any worse I'll stay like this and ring Judith again on Monday - or if it could just go that'd be amazing!
Fab news though! My friend Emily who I mentioned in my last blog receiving her double lung transplant was allowed home for Christmas! She has had to go back in but I spoke to her today and she said she's hoping to be out next week, I have everything crossed for her! It has been so lovely to get snapchats from her without her having O2 on! Please keep her, her family and her donor and their family not your thoughts :)
Oh and if I haven't said it enough times SIGN UP TO BECOME AN ORGAN DONOR! Make it your New Years resolution to give up two minutes of your time to potentially save peoples lives one day
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Wednesday, 11 December 2013
The holly and the IV
I have written two posts this time so please read the post below this one too, it's a very exciting one!!
After only getting a week of IVs a few weeks ago due to my port playing up it took its toll on my lungs and they need a proper boost! My temperature had been high for the past couple of weeks so I knew something was brewing but I felt okay so plodded on as I normally do, I didn't want to make a fuss if it was nothing. But last Thursday my head and sickness started to get bad, I just felt like the room was spinning and felt so queasy. Over the weekend it got worse and by Monday my lungs felt like they'd taken a blow. I had clinic on Tuesday anyway so went and explained how I'd felt and wanted some orals to tide me over until after Christmas and my 21st birthday in January but after doing my lung function which had dropped to about 45-50% we decided that I did need IVs to sort me out properly.
I've got Mero and Azteronum both three times a day. 12g of IV antibiotics a day will definitely take it's toll on my body. After only a couple of doses I'm already very achy, tired & feeling sick.
Today my chest has felt quite bad at times and chest pain is still there but hopefully now the IVs have been delivered and I can do them every 8 hours it means they'll start kicking the nasty bugs out!
On the upside at least I have some time to write Christmas cards and to try and make some decorations for my 21st celebrations! It always seems that every year I never get to enjoy the last two weeks of work as I'm too poorly - silly lungs!
But never mind, I need to be in tiptop condition for Christmas and my birthday so let's get these IVs out of the way now, they're due to finish on Christmas Eve so fingers crossed :)
After only getting a week of IVs a few weeks ago due to my port playing up it took its toll on my lungs and they need a proper boost! My temperature had been high for the past couple of weeks so I knew something was brewing but I felt okay so plodded on as I normally do, I didn't want to make a fuss if it was nothing. But last Thursday my head and sickness started to get bad, I just felt like the room was spinning and felt so queasy. Over the weekend it got worse and by Monday my lungs felt like they'd taken a blow. I had clinic on Tuesday anyway so went and explained how I'd felt and wanted some orals to tide me over until after Christmas and my 21st birthday in January but after doing my lung function which had dropped to about 45-50% we decided that I did need IVs to sort me out properly.
I've got Mero and Azteronum both three times a day. 12g of IV antibiotics a day will definitely take it's toll on my body. After only a couple of doses I'm already very achy, tired & feeling sick.
Today my chest has felt quite bad at times and chest pain is still there but hopefully now the IVs have been delivered and I can do them every 8 hours it means they'll start kicking the nasty bugs out!
On the upside at least I have some time to write Christmas cards and to try and make some decorations for my 21st celebrations! It always seems that every year I never get to enjoy the last two weeks of work as I'm too poorly - silly lungs!
But never mind, I need to be in tiptop condition for Christmas and my birthday so let's get these IVs out of the way now, they're due to finish on Christmas Eve so fingers crossed :)
Emily has new lungs!
I am sitting here with the biggest smile on my face and am so happy to tell you all that my lovely friend Emily Icke has received a double lung transplant! Yesterday, 10th December, marked 1 year of waiting on the transplant list. Emily got the call and after many hours of waiting to find out whether it was a go or not it was announced that at 7.15pm she would head down for her life changing surgery. I spent the whole day checking my phone, giving words of encouragement and just thinking about Emily but also her kind hearted donor who made this possible and their family.
Today is she is awake and breathing for herself - just amazing. Words cannot describe how happy I am for her, David and their families.
This is exactly why organ donation is so important.
Christmas is about spending time with your loved ones, family & friends and enjoying it. It isn't about how much your Christmas present cost or how many gifts you receive. So many people this christmas just want the gift of life, whether that's a lung or a heart, kidney, liver etc transplant and for somebody to give that gift..well words can't even describe it. You literally will change somebodies life.
All you need to do is go on to the organ donation website, it does only take a couple of minutes to sign up. But you MUST tell your loved ones about it as they make the decision when the time comes. I know some of you may not want to discuss it or sign up as it 'seems too morbid to be thinking about your death' but you never know what is round the corner and you could save lives, be that person who is thought about everyday and be somebodies miracle.
https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/registration_form.asp
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Wednesday, 20 November 2013
Paddy's in the spotlight again
For any new readers, just so you know Paddy is my port and not a mad Irish cousin of mine!
After I was discharged from hospital on the Friday, under the promise I would take it very steady, I stupidly got my IV line caught when connected and ended up yanking my gripper out - not a pleasant experience! I rang the cf ward as it was 7pm on a Saturday & all I could hear was Sweety laughing on the other end of the phone saying 'what are you like!' so I quickly popped down (bonus to being 1min away from hosp) and she put a new gripper in. Unfortunately some of the drug had gotten in the skin so for the next week I spent everyday going down to hospital as it would work for a while and then stop. In the end it wouldn't work at all! Judith said she'd book me in for a Portacathogram (which Charlie and I think sounds like some sort of strip-o-gram for hospital people!).
My worst fear was that it was kinked or there was a leak which would mean an op to have it out and I would be Paddy-less. Luckily the scan revealed that nothing was wrong and we've put it down to the area being swollen due to the drug leaking into my skin when I pulled the gripper out. So much drama.
I was in a bit of a funny mood all week, quite low and fed up. I guess I was thinking too much about things. I went back to work and was just exhausted, even though I had only done two days and then it was the weekend. Even today, it's only Wednesday and I'm ready for a weekend so I can rest.
The main worry is I didn't manage the two weeks of IVs as paddy threw a strop so I could get poorly again soon, but then on the other hand I could be fine! The past week I've been feeling okay but a temperature of 37.8 every day and I'm not entirely sure why. They usually come down but then later on are back up again, I've had a little bit of chest pain but my breathing is ok and I'm feel fine in myself. Me being me just carries on and tries to ignore it! I was sitting in bed the other night thinking other people don't have to worry this much about the possibility of getting sick, to others it seems such a silly thing to worry about as you can't do anything to avoid it (as such) but when you're in that situation it does crop up in your mind from time to time. In a couple of weekends it's Tom's birthday, then Christmas, then new year and then my 21st & I was thinking, if I need IVs I don't want to miss out on any of these occasions, hopefully I can make it to the 9th Jan without feeling ill enough for IVs!
Well now all the boring medical things are out the way I can say that I have finally sorted out my 21st (minus a few details like making things) so I am very excited about that! I have found the perfect sparkly dress for it too so even more exciting although maybe not for any male readers who probably have stopped reading by the word 'sparkly'! :)
I'm just needing to organise myself at the moment as I have so many things I need to do for my birthday, Christmas, work things. Which is mainly why it's taken me a while to write this blog as I've been so busy doing various things.
Have a good rest of the week and I'll try to keep things updated!
- Posted using BlogPress from my iPad
After I was discharged from hospital on the Friday, under the promise I would take it very steady, I stupidly got my IV line caught when connected and ended up yanking my gripper out - not a pleasant experience! I rang the cf ward as it was 7pm on a Saturday & all I could hear was Sweety laughing on the other end of the phone saying 'what are you like!' so I quickly popped down (bonus to being 1min away from hosp) and she put a new gripper in. Unfortunately some of the drug had gotten in the skin so for the next week I spent everyday going down to hospital as it would work for a while and then stop. In the end it wouldn't work at all! Judith said she'd book me in for a Portacathogram (which Charlie and I think sounds like some sort of strip-o-gram for hospital people!).
My worst fear was that it was kinked or there was a leak which would mean an op to have it out and I would be Paddy-less. Luckily the scan revealed that nothing was wrong and we've put it down to the area being swollen due to the drug leaking into my skin when I pulled the gripper out. So much drama.
I was in a bit of a funny mood all week, quite low and fed up. I guess I was thinking too much about things. I went back to work and was just exhausted, even though I had only done two days and then it was the weekend. Even today, it's only Wednesday and I'm ready for a weekend so I can rest.
The main worry is I didn't manage the two weeks of IVs as paddy threw a strop so I could get poorly again soon, but then on the other hand I could be fine! The past week I've been feeling okay but a temperature of 37.8 every day and I'm not entirely sure why. They usually come down but then later on are back up again, I've had a little bit of chest pain but my breathing is ok and I'm feel fine in myself. Me being me just carries on and tries to ignore it! I was sitting in bed the other night thinking other people don't have to worry this much about the possibility of getting sick, to others it seems such a silly thing to worry about as you can't do anything to avoid it (as such) but when you're in that situation it does crop up in your mind from time to time. In a couple of weekends it's Tom's birthday, then Christmas, then new year and then my 21st & I was thinking, if I need IVs I don't want to miss out on any of these occasions, hopefully I can make it to the 9th Jan without feeling ill enough for IVs!
Well now all the boring medical things are out the way I can say that I have finally sorted out my 21st (minus a few details like making things) so I am very excited about that! I have found the perfect sparkly dress for it too so even more exciting although maybe not for any male readers who probably have stopped reading by the word 'sparkly'! :)
I'm just needing to organise myself at the moment as I have so many things I need to do for my birthday, Christmas, work things. Which is mainly why it's taken me a while to write this blog as I've been so busy doing various things.
Have a good rest of the week and I'll try to keep things updated!
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Sunday, 3 November 2013
Hospital freedom!
After a few days in hospital they said I could be discharged as long as I took it very steady, however it wasn't Dr Ho that saw me (was some random but friendly registrar) and I reckon if Dr Ho had come he would have kept me in over the weekend but as you know, I was determined to get back home. I did feel better otherwise I would have stayed but I felt like I was on the mend so homeward bound I went. Whilst I was in hospital they let me try a machine called 'the bird' which is a machine that basically breathes in for you. I used it for physio, it was very strange at first as it just forces air in to your lungs but it felt great to not have to put the effort in and parts of my lungs that haven't been inflated in a long time were getting air.
It got me thinking though.. Spending time in hospital, doing IVs at home just seems so 'normal' and 'everyday' to me, it doesn't seem like a strange occurrence. Quite strangely I became jealous of those who can just go out when they want, not have to rely on how sick they
feel, have to juggle medication times, not sit and think 'how far away is where I need to be from the parking' incase you can't walk that far. Pretty much everyone I know was out celebrating Halloween last night whilst I was tucked up in bed, feeling sick and it got me so down..CF presents mental strain as well as the physical and a lot of people don't realise this especially when you're not sitting there moaning about it 24/7.
When I'm well it's okay and I can do a lot of things and not have to worry too much. But when I'm ill I get ill very quickly and it seems to hit me hard, this time a lung function drop of a litre in a week and struggling to breathe comfortably.
However then comes the guilt, I see my lovely friends who are on the transplant list suffering and I feel so bad about complaining about how ill I feel when in comparison, they're suffering so much more and everyday. Sometimes things feel so unfair, people have to go through this, their close family and friends go through it with them yet so many people are so oblivious to what goes on because a lot of CFers just slap on a smile and say everything's 'okay'. We NEED to raise more awareness, the bad side of things but then the good side of people who have had their transplant are doing amazing things! So here comes the plea..please please sign up to become an organ donor, it is so urgent. If it was your friend or your family member or you dying you would want the gift of life from a stranger so don't be hypocritical and sign up - the link is on the side on my blog, live life then give life.
Me being the eegit I am, managed to yank out my gripper yesterday. I was connected to my IV put got up and the tube got caught on the sofa so the needle moved and the mero was going into my skin rather than my port which really bloody hurt! So I popped down to hosp (so glad it's a min away!) and had a new one put in :) Today I've got a few chest aches/pains and I'm feeling rather sick so I'm hoping that it soon stops as I know that if I see the Dr again he'll admit me! I've got about a week and a half off work as I can't work with my gripper in so I'm going to go for walks around garden centres and things, seeing the Christmas decorations, with Mum to build my stamina back up and get these lungs working properly :)
Fingers crossed everything starts to go on the up.
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It got me thinking though.. Spending time in hospital, doing IVs at home just seems so 'normal' and 'everyday' to me, it doesn't seem like a strange occurrence. Quite strangely I became jealous of those who can just go out when they want, not have to rely on how sick they
feel, have to juggle medication times, not sit and think 'how far away is where I need to be from the parking' incase you can't walk that far. Pretty much everyone I know was out celebrating Halloween last night whilst I was tucked up in bed, feeling sick and it got me so down..CF presents mental strain as well as the physical and a lot of people don't realise this especially when you're not sitting there moaning about it 24/7.
When I'm well it's okay and I can do a lot of things and not have to worry too much. But when I'm ill I get ill very quickly and it seems to hit me hard, this time a lung function drop of a litre in a week and struggling to breathe comfortably.
However then comes the guilt, I see my lovely friends who are on the transplant list suffering and I feel so bad about complaining about how ill I feel when in comparison, they're suffering so much more and everyday. Sometimes things feel so unfair, people have to go through this, their close family and friends go through it with them yet so many people are so oblivious to what goes on because a lot of CFers just slap on a smile and say everything's 'okay'. We NEED to raise more awareness, the bad side of things but then the good side of people who have had their transplant are doing amazing things! So here comes the plea..please please sign up to become an organ donor, it is so urgent. If it was your friend or your family member or you dying you would want the gift of life from a stranger so don't be hypocritical and sign up - the link is on the side on my blog, live life then give life.
Me being the eegit I am, managed to yank out my gripper yesterday. I was connected to my IV put got up and the tube got caught on the sofa so the needle moved and the mero was going into my skin rather than my port which really bloody hurt! So I popped down to hosp (so glad it's a min away!) and had a new one put in :) Today I've got a few chest aches/pains and I'm feeling rather sick so I'm hoping that it soon stops as I know that if I see the Dr again he'll admit me! I've got about a week and a half off work as I can't work with my gripper in so I'm going to go for walks around garden centres and things, seeing the Christmas decorations, with Mum to build my stamina back up and get these lungs working properly :)
Fingers crossed everything starts to go on the up.
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Thursday, 31 October 2013
Feeling like you're drowning is the worst feeling
Sorry it's taken a while to write this blog but I've been so ill past few days and just not had the energy to focus and type.
It's hard to explain to people how it actually feels when you're struggling. I think people assume that it's how they feel when they have a cold or just think "but you deal with it all the time so surely you're used to it?" But you're not and with each tiny breath you hope that you'll bounce back quickly and wont deteriorate any further.
On Tuesday they admitted me in to Frimley, I wasn't too surprised as I'd had an extremely rough weekend and although I kept a smile on my face I knew that I was heading for a little stay so it wasn't a shock.
I'll start from the beginning..Last Thursday I came home from work with a cold starting & by Friday evening my cough was all the time, I couldn't go more than a minute without coughing. 9am I was exhausted so went to bed. I woke up at 2am with that all too familiar feeling of a high temperature. It was 39.1 and stayed like that for ages but eventually it started to come down but it took until 4.30am to get to 37.7. I just really couldn't breathe well and that took it out of me. The exact same thing happened all weekend, my chest felt like it was full of glue and was so uncomfortable to breathe; it sounded like I'd inhaled a bowl of rice krispies. I managed to get out for my best friends 21st on Saturday evening as it was just a meal so I could sit down and relax, didn't have to be running around anywhere.
In clinic on Tuesday we found out my lung function had gone from about 2.3l (65%) to 1.3l (37%) so I was not happy at all, it's a massive drop in such a short space of time (a week). Feeling like you're drowning is the worst feeling. Dr Ho put me on IV meropenum and IV aztreonum and I managed to get a room in the evening. I had a little bit of O2 on the first evening as my SATS were a bit up and down and it helped my lungs along.
You can't always explain how horrible it all feels and I wish someone could feel what it's like, just for 5 minutes, so they can get some perspective.
At 2am Wednesday morning my poor night nurse woke me up, "I'm so sorry, they want you to come for your x-ray now" - apparently the radiographer who'd had my slip for ages decided that 2am would be a fabulous time for me to go. I was not a happy girl! And when I got back there were lorries outside my room unloading things and beeping so I didn't get much sleep at all that night.
Dr Ho saw me this morning and said he wanted me on some steroids (pred), much to my disgust..I hate steroids with a passion. They make my face so rounded and make my moods all over the place. But if I need them then I'll have them. I did ask when I can go home as I previously had said I'll stay in if I can go home by the weekend and he said he'll see me tomorrow and if I am improving maybe tomorrow or over the weekend I could go, but he really wants these huge coughing fits to ease up a bit as just as he walked in I was throwing up from coughing so much!
Fingers crossed that everything starts improving and I can finish the course of IVs off at home - I'm having patches where my breathing is easier so that's a promising sign. The physio said we might try 'the bird' which is a machine that pushes air in to your lungs to help you breathe so will hopefully expand my airways and help shift all the mucus that's stuck.
Happy Halloween :)
It's hard to explain to people how it actually feels when you're struggling. I think people assume that it's how they feel when they have a cold or just think "but you deal with it all the time so surely you're used to it?" But you're not and with each tiny breath you hope that you'll bounce back quickly and wont deteriorate any further.
On Tuesday they admitted me in to Frimley, I wasn't too surprised as I'd had an extremely rough weekend and although I kept a smile on my face I knew that I was heading for a little stay so it wasn't a shock.I'll start from the beginning..Last Thursday I came home from work with a cold starting & by Friday evening my cough was all the time, I couldn't go more than a minute without coughing. 9am I was exhausted so went to bed. I woke up at 2am with that all too familiar feeling of a high temperature. It was 39.1 and stayed like that for ages but eventually it started to come down but it took until 4.30am to get to 37.7. I just really couldn't breathe well and that took it out of me. The exact same thing happened all weekend, my chest felt like it was full of glue and was so uncomfortable to breathe; it sounded like I'd inhaled a bowl of rice krispies. I managed to get out for my best friends 21st on Saturday evening as it was just a meal so I could sit down and relax, didn't have to be running around anywhere.
In clinic on Tuesday we found out my lung function had gone from about 2.3l (65%) to 1.3l (37%) so I was not happy at all, it's a massive drop in such a short space of time (a week). Feeling like you're drowning is the worst feeling. Dr Ho put me on IV meropenum and IV aztreonum and I managed to get a room in the evening. I had a little bit of O2 on the first evening as my SATS were a bit up and down and it helped my lungs along.
You can't always explain how horrible it all feels and I wish someone could feel what it's like, just for 5 minutes, so they can get some perspective.
At 2am Wednesday morning my poor night nurse woke me up, "I'm so sorry, they want you to come for your x-ray now" - apparently the radiographer who'd had my slip for ages decided that 2am would be a fabulous time for me to go. I was not a happy girl! And when I got back there were lorries outside my room unloading things and beeping so I didn't get much sleep at all that night.
Dr Ho saw me this morning and said he wanted me on some steroids (pred), much to my disgust..I hate steroids with a passion. They make my face so rounded and make my moods all over the place. But if I need them then I'll have them. I did ask when I can go home as I previously had said I'll stay in if I can go home by the weekend and he said he'll see me tomorrow and if I am improving maybe tomorrow or over the weekend I could go, but he really wants these huge coughing fits to ease up a bit as just as he walked in I was throwing up from coughing so much!
Fingers crossed that everything starts improving and I can finish the course of IVs off at home - I'm having patches where my breathing is easier so that's a promising sign. The physio said we might try 'the bird' which is a machine that pushes air in to your lungs to help you breathe so will hopefully expand my airways and help shift all the mucus that's stuck.
Happy Halloween :)
Saturday, 19 October 2013
Progress & exciting things
First thing! After a month of mucking about with various tummy meds Dr Higton reviewed my latest xray on Friday and said that the blockage is pretty much gone, finally. You would think it would be a massive relief, and in a way yes it was - I was glad I could go back to work, have my driving lessons and go out with friends, Tom & family. However my heart did sink a little; why am I still bloated and in pain? I look pregnant when I've eaten, have stabbing pains and am always so full up. Dr Higton and I had a chat; she said that my stomach could still be irritated or it could be more like an IBS type thing. So she suggested I take some peppermint tablets, carry on with a smaller dose of the tummy meds so I'm able to go out, work and everything and if in 3-4 weeks it hasn't got any better or gets drastically worse they'll refer me to a stomach specialist as it could be an intolerance to certain foods (although I get it no matter what I've eaten) or another problem that she cant identify.
Second (much more exciting) thing! Mum and I went to our cocktail masterclass last weekend, it was amazing! The guy who hosted was hilarious. We enjoyed 3 cocktails that he made and then we were let loose behind the bar to make our own cocktail! Mine was crushed fresh strawberries, vodka, sugar syrup, gingerbread syrup topped up with champagne. It was really interesting the things they told you - about the how the freshness of the ingredients make a difference, how you need a certain percentage of alcohol and the quality of the alcohol too.
I've wanted to get back in to swimming for a while now but every time I plan to go I end up ill. Finally I managed to get there yesterday. Pretty pleased with myself, I managed 1 length, then a break, then another length & so on and carried on for about 20minutes. My plan is to work my way up to doing more lengths in one go and staying for longer - it's a bit heartbreaking as I used to be able to swim for ages, just fast strong swimming and no stops. And now after 1 length I'm puffing away and having to stop to catch my breath. But I know I'll get there, it'll just take time - I wont be able to swim as much as I used to but I know I can get it better than what it is at the moment and I'm determined to! :)
Fingers crossed that it's just irritated and the peppermint tablets, lots of water and exercise stop it all and I can get back to looking normal and not like I'm expecting!
Second (much more exciting) thing! Mum and I went to our cocktail masterclass last weekend, it was amazing! The guy who hosted was hilarious. We enjoyed 3 cocktails that he made and then we were let loose behind the bar to make our own cocktail! Mine was crushed fresh strawberries, vodka, sugar syrup, gingerbread syrup topped up with champagne. It was really interesting the things they told you - about the how the freshness of the ingredients make a difference, how you need a certain percentage of alcohol and the quality of the alcohol too. 
I've wanted to get back in to swimming for a while now but every time I plan to go I end up ill. Finally I managed to get there yesterday. Pretty pleased with myself, I managed 1 length, then a break, then another length & so on and carried on for about 20minutes. My plan is to work my way up to doing more lengths in one go and staying for longer - it's a bit heartbreaking as I used to be able to swim for ages, just fast strong swimming and no stops. And now after 1 length I'm puffing away and having to stop to catch my breath. But I know I'll get there, it'll just take time - I wont be able to swim as much as I used to but I know I can get it better than what it is at the moment and I'm determined to! :)
I'm back off to work on Monday and then it's half term so at least it eases me back in gently!
Have a good weekend xx
Wednesday, 9 October 2013
Hard to put into words how you feel..
It's hard to put in to words how you feel sometimes. Right now I feel as though my insides are made of Velcro and fuzzy stuff, my whole body feels so strange. I keep feeling quite out of it and when I look and move my hands it feels so bizarre. My head just pounds ALL the time as though there's a little man with a drum kit in there! The sickness swirls over me and it's so difficult - I know I HAVE to drink as the stomach meds make you so dehydrated but with every mouthful it makes me retch. Food was okay but I'm starting to feel less and less hungry and it's becoming more of a task - you shouldn't have to feel that eating and drinking is a chore. This is sooo much worse than last time I had these meds two weeks ago.
On Monday night I had horrific stomach pains, right up the top. It felt as though someone was stabbing me. Five minutes of intense pain then gone, all of a sudden. And just as I though it was finished it'd come right back. I was just curled up on the sofa unable to move, mum got me a hot water bottle to see if it would help and eventually I made it upstairs so I could go to bed.
It's mainly when I wake till about late afternoon that I feel at my worst, the heart races, head is so bad, sickness is high, I feel so 'fuzzy' as I like to put it and even though I can't always sleep, just no energy to do anything either.
I know that if I start to be sick I need to ring hospital as they can admit me for fluids etc to keep me hydrated but I really don't want that :(
On Saturday mum and I have a cocktail masterclass and lunch in Harvey Nichols in London - it's a present I got her for her birthday in July and I just cannot change it so I'm stopping the meds for a morning so we're able to go :) then as soon as we're back home I'm starting them up again.
So for now I'm just doing what I've been doing all week, either lazing in bed for the morning and then moving downstairs to the sofa to relax whilst having breaks to just walk around the house to stretch my legs. My chest is starting to join in on the action now too so I'm hoping it doesn't pipe up too much! Otherwise I will be having to ring hospital for a stay in..
I wish I could just sleep all the time as when I'm asleep I don't feel so ill.
Have a lovely rest of the week xx
- Posted using BlogPress from my iPad
On Monday night I had horrific stomach pains, right up the top. It felt as though someone was stabbing me. Five minutes of intense pain then gone, all of a sudden. And just as I though it was finished it'd come right back. I was just curled up on the sofa unable to move, mum got me a hot water bottle to see if it would help and eventually I made it upstairs so I could go to bed.
It's mainly when I wake till about late afternoon that I feel at my worst, the heart races, head is so bad, sickness is high, I feel so 'fuzzy' as I like to put it and even though I can't always sleep, just no energy to do anything either.
I know that if I start to be sick I need to ring hospital as they can admit me for fluids etc to keep me hydrated but I really don't want that :(
On Saturday mum and I have a cocktail masterclass and lunch in Harvey Nichols in London - it's a present I got her for her birthday in July and I just cannot change it so I'm stopping the meds for a morning so we're able to go :) then as soon as we're back home I'm starting them up again.
So for now I'm just doing what I've been doing all week, either lazing in bed for the morning and then moving downstairs to the sofa to relax whilst having breaks to just walk around the house to stretch my legs. My chest is starting to join in on the action now too so I'm hoping it doesn't pipe up too much! Otherwise I will be having to ring hospital for a stay in..
I wish I could just sleep all the time as when I'm asleep I don't feel so ill.
Have a lovely rest of the week xx
- Posted using BlogPress from my iPad
Friday, 4 October 2013
Stomach & chest are both fighting for attention!p
Hey everyone :)
After a really bad week chest wise (temperatures, feeling like I was drowning, all the fun things!) I went back to work last week, managed okay considering, but by Monday the blockage pains returned - I did wonder if they would as I am still extremely bloated.
I went down to hospital this morning; my lung function was slightly better but still not great but Dr Higton decided that as I was improving we would leave that but that I must ring if I get any worse.
They re X-ray'd me to see what was going on and as we thought there's still a blockage there! So we're back to the same meds for a week, possibly two. Unfortunately the tummy meds stop the Kalydedo working as well so I am expecting to feel shit for the next week or so anyway due to that. The evenings can still be pretty rough chest wise at the moment too, coughing fits just exhaust you and hurt.
So that all means no work because of my stomach and my chest, so as you can imagine I'm pretty upset. The past week I've been feeling quite low anyway so this really has added salt to the wound. Mums been amazing, treating me to Starbucks, getting me some lovely Lush bath bombs and just generally being there for me to cheer me up :)
I'm hoping and praying that 1-2 more weeks of this and my stomach will just be back to normal - I've had enough of the pain and looking like I'm pregnant now! We're fiddling around with my Creon too as the dosage was upped when I was very very sick and very tiny so we're wondering if actually they're too strong and I need less so it'll be a bit of trial and error I think!
Cross your fingers everyone because I think if it doesn't work this time I'll be on even stronger meds or may have to stay in which is obviously something I really don't want.
If you have any ideas of things to keep me entertained whilst I'm off please give me suggestions!
Have a lovely weekend :) xx- Posted using BlogPress from my iPad
After a really bad week chest wise (temperatures, feeling like I was drowning, all the fun things!) I went back to work last week, managed okay considering, but by Monday the blockage pains returned - I did wonder if they would as I am still extremely bloated.
I went down to hospital this morning; my lung function was slightly better but still not great but Dr Higton decided that as I was improving we would leave that but that I must ring if I get any worse.
They re X-ray'd me to see what was going on and as we thought there's still a blockage there! So we're back to the same meds for a week, possibly two. Unfortunately the tummy meds stop the Kalydedo working as well so I am expecting to feel shit for the next week or so anyway due to that. The evenings can still be pretty rough chest wise at the moment too, coughing fits just exhaust you and hurt.
So that all means no work because of my stomach and my chest, so as you can imagine I'm pretty upset. The past week I've been feeling quite low anyway so this really has added salt to the wound. Mums been amazing, treating me to Starbucks, getting me some lovely Lush bath bombs and just generally being there for me to cheer me up :)
I'm hoping and praying that 1-2 more weeks of this and my stomach will just be back to normal - I've had enough of the pain and looking like I'm pregnant now! We're fiddling around with my Creon too as the dosage was upped when I was very very sick and very tiny so we're wondering if actually they're too strong and I need less so it'll be a bit of trial and error I think!
Cross your fingers everyone because I think if it doesn't work this time I'll be on even stronger meds or may have to stay in which is obviously something I really don't want.
If you have any ideas of things to keep me entertained whilst I'm off please give me suggestions!
Have a lovely weekend :) xx- Posted using BlogPress from my iPad
Saturday, 21 September 2013
These orals better kick this infection in the balls.
I feel like I've hit that oh-too-familiar downwards spiral that I recognise from pre-Kalydeco days.
Over the past few days since I last blogged this cough has started. First of all it was your usual 'I've got a cold' tickley cough. Thursday night I was feeling pretty flushed and my temp was slightly up, not too much so wasn't particularly worried. But overnight my cough changed, I woke up at 6 for my tummy meds and was coughing away for a good few minutes. Not impressed I chugged down the meds and went back to sleep hoping it was just a bit of post-nasal drip that had set me off.
I woke up a few hours later and felt all out of it and my cheeks were bright red. My cough was further down my throat and so painful. Luckily the thermometer was right by my bed so I reached out for that - 37.8 shit. I've had temperatures way worse than that before, don't get me wrong, but the fact it was nearing to 38, I was coughing & judging by the way I felt I knew too well this was how my chest infections begin. I tried to dose in and out of sleep all day Friday but I kept coughing just as I was dosing off and it made me jump!
My friend Katie came to cheer me up in the evening so we had a lovely chilled girly night.
I realised at the end of the day and checking my temperature, popping pills and all that malarkey that after 3 or 4 hours my temp was right back up. My heart sank. Usually I used to have a temp and it would go and stay down for a fair bit, but the past two times I've been really ill it's been hard to manage. Yes again I know it could be a lot higher and it has been a lot higher but 38 is pretty high and I just can feel something inside that's taking me back down that slope.
Today I woke up, same thing but my cough again had moved further down and now it sits and the top of my chest which is bloody agony! Every time I cough it feels as though my collarbones are breaking. My temperature is doing the same thing.
Also, I feel like I have an elephant sat on my chest permanently, so if someone could remove it I'd be most grateful! :)
I've got Jess over this evening for a film night in, we were meant to be going out for some drinks but it's too much of a struggle. I managed to go out for a little while earlier to buy some fondant to make cupcakes for mum and dads 25th anniversary on Tuesday but that was hard, every time I cough when I'm walking I feel as though I'm going to pass out!
So we will see how I go over the next couple of days. I have a clinic appointment on 4th October so just under two weeks but if this carries on I think IVs are inevitable - not what I want as it's two weeks off work :(
It really is scary when you lie there at night with a horrible temperature, coughing literally every 10seconds (if that!) especially when you've had such bad experiences in the past, it immediately brings that flooding back. My breathing varies throughout the day, seems to be worse in the evenings but I've got my lovely nebs! I'm really hoping these orals that I'm on kick this right in the balls so I don't need IVs or hospital and I don't get as sick as I have been before. I'm willing my little lungs to keep going, I really don't want to start heading back to being very ill, unable to walk far. You never know how you're going to be though, the fact this has all started in a matter of days you can't tell if you'll become very ill very quick or if you'll be fine after some orals and week of rest. So you've just got to make the most of what you're doing now and keep plodding on :) only thing to do!
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Over the past few days since I last blogged this cough has started. First of all it was your usual 'I've got a cold' tickley cough. Thursday night I was feeling pretty flushed and my temp was slightly up, not too much so wasn't particularly worried. But overnight my cough changed, I woke up at 6 for my tummy meds and was coughing away for a good few minutes. Not impressed I chugged down the meds and went back to sleep hoping it was just a bit of post-nasal drip that had set me off.
I woke up a few hours later and felt all out of it and my cheeks were bright red. My cough was further down my throat and so painful. Luckily the thermometer was right by my bed so I reached out for that - 37.8 shit. I've had temperatures way worse than that before, don't get me wrong, but the fact it was nearing to 38, I was coughing & judging by the way I felt I knew too well this was how my chest infections begin. I tried to dose in and out of sleep all day Friday but I kept coughing just as I was dosing off and it made me jump!
My friend Katie came to cheer me up in the evening so we had a lovely chilled girly night.
I realised at the end of the day and checking my temperature, popping pills and all that malarkey that after 3 or 4 hours my temp was right back up. My heart sank. Usually I used to have a temp and it would go and stay down for a fair bit, but the past two times I've been really ill it's been hard to manage. Yes again I know it could be a lot higher and it has been a lot higher but 38 is pretty high and I just can feel something inside that's taking me back down that slope.
Today I woke up, same thing but my cough again had moved further down and now it sits and the top of my chest which is bloody agony! Every time I cough it feels as though my collarbones are breaking. My temperature is doing the same thing.
Also, I feel like I have an elephant sat on my chest permanently, so if someone could remove it I'd be most grateful! :)
I've got Jess over this evening for a film night in, we were meant to be going out for some drinks but it's too much of a struggle. I managed to go out for a little while earlier to buy some fondant to make cupcakes for mum and dads 25th anniversary on Tuesday but that was hard, every time I cough when I'm walking I feel as though I'm going to pass out!
So we will see how I go over the next couple of days. I have a clinic appointment on 4th October so just under two weeks but if this carries on I think IVs are inevitable - not what I want as it's two weeks off work :(
It really is scary when you lie there at night with a horrible temperature, coughing literally every 10seconds (if that!) especially when you've had such bad experiences in the past, it immediately brings that flooding back. My breathing varies throughout the day, seems to be worse in the evenings but I've got my lovely nebs! I'm really hoping these orals that I'm on kick this right in the balls so I don't need IVs or hospital and I don't get as sick as I have been before. I'm willing my little lungs to keep going, I really don't want to start heading back to being very ill, unable to walk far. You never know how you're going to be though, the fact this has all started in a matter of days you can't tell if you'll become very ill very quick or if you'll be fine after some orals and week of rest. So you've just got to make the most of what you're doing now and keep plodding on :) only thing to do!
- Posted using BlogPress from my iPad
Wednesday, 18 September 2013
Body is going tits up!
Why is it that your body seems to be perfectly fine for a while and then decides to throw a wobbly?
Monday I made an emergency appointment to see Dr Higton on Tuesday - I thought my blockage had got better but it came back with a vengeance. The past few evenings my lungs have thought they'd join in the action too and yesterday I felt awful, just in time to see the doctor. Obviously lungs were fed up of my stomach having more attention than they did.
I had two abdo X-rays which confirmed my stomach issues. Radha popped in to do my lung function but unfortunately it had dropped to 1.7 so I've started on some orals in the hope they will help things. Fingers crossed I won't need to go on any IVs!
Yesterday evening I really suffered though, searing and shooting pains through my left lung and then just lung pain all the time in various areas - I have never had lung pain that bad, I was in agony and breathing was such a challenge too.
Hospital know me too well and know that within a couple of days I would have rushed straight back to work and doing loads of things so they have said no work this week & to rest at home..need to sort out my stomach first plus we don't want my lungs straining hard and getting a lot worse.
This morning I'm feeling really sick so just relaxing in bed for a while before I feel like I can move.
But never mind, I keep on plodding on and hopefully in a few days I'll be feeling more like my usual self! The past week I've had a few emotional days for various reasons so it's quite nice to relax now & reflect over things that have happened.
I'll try and update in a few days, lets hope it's good news!
- Posted using BlogPress from my iPhone
Monday I made an emergency appointment to see Dr Higton on Tuesday - I thought my blockage had got better but it came back with a vengeance. The past few evenings my lungs have thought they'd join in the action too and yesterday I felt awful, just in time to see the doctor. Obviously lungs were fed up of my stomach having more attention than they did.
I had two abdo X-rays which confirmed my stomach issues. Radha popped in to do my lung function but unfortunately it had dropped to 1.7 so I've started on some orals in the hope they will help things. Fingers crossed I won't need to go on any IVs!
Yesterday evening I really suffered though, searing and shooting pains through my left lung and then just lung pain all the time in various areas - I have never had lung pain that bad, I was in agony and breathing was such a challenge too.
Hospital know me too well and know that within a couple of days I would have rushed straight back to work and doing loads of things so they have said no work this week & to rest at home..need to sort out my stomach first plus we don't want my lungs straining hard and getting a lot worse.
This morning I'm feeling really sick so just relaxing in bed for a while before I feel like I can move.
But never mind, I keep on plodding on and hopefully in a few days I'll be feeling more like my usual self! The past week I've had a few emotional days for various reasons so it's quite nice to relax now & reflect over things that have happened.
I'll try and update in a few days, lets hope it's good news!
- Posted using BlogPress from my iPhone
A year can feel so quick and so slow
One year ago I lost my lovely friend Samantha Morris. One year ago I lost the first person I met in Frimley cf unit, the girl who supported me when I was so ill and scared. Sammy was the toughest chick I've ever met. Tuesday 17th September will always be a date that sticks in my head.
A year has felt so slow, a long year where I'm always thinking of her, trying not to cry in the anger, hurt and emotions that come flooding back every single time I think about her, even in happy memories I find myself laughing and crying at the same time. Although I can hear her calling me a dopey cow and to stop crying!
Yet in another way a year has gone so quickly. I can't believe it's been that long when it feels like barely anytime has passed since we were chatting away, sneaking out of our hospital rooms to chat in the corridor!
I miss Sammy so much but she inspired me to stay strong. Stay strong like she did. And if I can have an ounce of the courage that she had, then I'll be proud of myself.
Today mum and I went into the park and did a balloon release in memory of her. The minute we stepped out the car the heavens opened and the minute we got back in the car it stopped! So I knew that was Sammy making sure we didn't cry but laughed as slipped down the hill!
I miss and love you Sammy ❤
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A year has felt so slow, a long year where I'm always thinking of her, trying not to cry in the anger, hurt and emotions that come flooding back every single time I think about her, even in happy memories I find myself laughing and crying at the same time. Although I can hear her calling me a dopey cow and to stop crying!
Yet in another way a year has gone so quickly. I can't believe it's been that long when it feels like barely anytime has passed since we were chatting away, sneaking out of our hospital rooms to chat in the corridor!
I miss Sammy so much but she inspired me to stay strong. Stay strong like she did. And if I can have an ounce of the courage that she had, then I'll be proud of myself.
Today mum and I went into the park and did a balloon release in memory of her. The minute we stepped out the car the heavens opened and the minute we got back in the car it stopped! So I knew that was Sammy making sure we didn't cry but laughed as slipped down the hill!
I miss and love you Sammy ❤
- Posted using BlogPress from my iPad
Sunday, 1 September 2013
Bloomin' Blockages!
The past few weeks I've had a niggling feeling in my stomach that I usually get when a blockage is beginning so I had a few movicol once/twice a day to see if it would help. But Saturday morning I woke up and half way through getting ready my stomach made the most strangest of noises...almost like when you turn a tap on, it gets an air lock and splutters! Not long after, I was sat on the sofa feeling rather hot, took an antisickness tablet as I suddenly felt very ill and curled up. I just wanted to cry with the stabbing pains in the top of my stomach and with the intense sickness that I hadn't felt in a long time. Not long after I just had to go to the bathroom and was ill. Felt so much better. The minutes feel like hours when you feel that ill. I went and got a drink but every time I had a few sips it just wouldn't stay down. After a while mum wondered whether we should go to a&e as I couldn't keep any fluids down and was starting to get too dehydrated. I ended up drinking a little more and falling asleep on the sofa and after 15 minutes woke up but started to feel better.
Luckily I managed to keep liquids down so after 4 hours I tried to eat a bit of food and that was okay.
Today I've still not been ill which is great, I've had some stabby pains but not as severe, I've stayed on top of the movicol and made sure I've been drinking plenty. I'll probably ring clinic tomorrow and speak to Judith, let her know what's been going on (just in case they want to see me) and arrange a port flush. Then have a nice day out with mum and a girly night in with Luci before work starts on Tuesday :)
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Location:Bloomin' blockages
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