So after saturday's episode I was expecting clinic to be alot worse:
However when the doctor you see is one who rarely ever does clinics and so hasn't seen you in a year, has no idea what has been going on generally things kind of get ignored. The hemoptysis was mostly ignored with no real answers as to why it happened. The topic of aspergillous wasn't even brought up this clinic (both of these things I will be chasing at my next clinic appt).
My lung function was down by 15% from my best and what I had been expecting after finishing IVs. I have been put on a 2week course of ciprofloxacin to try and help improve lung function and another appointment for a month!
Wedding!
Thursday, September 8, 2011
Sunday, September 4, 2011
Not the best of weekends
So not the best of weekends I ever had.....
It started off well. I finished IVs on wednesday morning and was feeling great. Then from about thursday evening I started to come down with a cold, most of friday I had a sore throat from a really dry irritating cough (not productive in the slightest) and so guessed it was related to the cold! Friday evening I went out with friends to pizza hut and then back to one of their houses to see their dogs! I got home at about 10.30pm and was feeling alright bar the cold.
I woke up at about 2.15am and started coughing and thought 'thats not right', so turned my bedroom light on to discover I was coughing up blood. This continued for a good 15minutes before I rang my mum and told her I needed her to come round. We then took a trip to a&e where it had died down abit to just a few streaks of blood rather than whole mouthfuls of it. However about 20minutes after being in A&E, just as the doctor came in it started again and continued for the whole time he was with me trying to ask me questions. This is quite difficult to answer as you are coughing up blood. After they discovered I had a pink card which gave me direct access to the hospital ward where I have my CF care they decided to just send me there instead of keep me in the local hospital for observation (I think they were abit scared on how to deal with me because I have CF!). So after 2 failed attempts at a cannula being inserted and finally successful on the 3rd I was put on fluids (because my heartrate was high and was for the whole time I was in hospital!), I was then put into an ambulance to go to my normal hospital. My mum was told she could not drive me over because I had a cannula in and I was being admitted through a&e so it had to be an ambulance. So I was put in the ambulance at about 5.15am and arrived at about 6am.
There I was asked the exact same questions as I was in a&e and so repeated my answers. Despite the fact bloods were taken in my local hospital, they had to be repeated at my normal one. As the first lot were taken in a different county so they could not access them. This meant another needle because they couldnt possibly use the cannula as this was being used for fluids. I was also sent for an xray as well.
After being reviewed by the CF registrar on call he decided I could go home with a short course of tranexamic acid to help the blood clot as none of my bloodwork showed any sign of infection and as I had just finished IVs on wednesday he was reluctant to start me on more because I already have multiresistant pseudo (only sensitive to 2antibiotics now so he didnt want to reduce it more!). Also there was the condition that I had to of had no more episodes during the day before I was allowed home at about 3 or 4pm ish.
My mum and brother turned up at about 2pm and I was allowed home at about 2.30pm after my prescription had arrived from pharmacy and my doctor had confirmed all my bloods were ok. I finally got home at about 3.15pm
It was a long day yesterday. I had at most an hours sleep since getting into bed at 11pm friday night until I went to bed at 8pm saturday night. I was so exhausted that just the efforting of eating made me sick. I had very little to eat on saturday as I had no insulin in the hospital (they kept asking me if I had brought my meds in with me and when I said no because I went to a&e at 2.30am and didnt really think about it they gave me weird looks. Also hospital pharmacy just dont act fast enough on any day of the week for them to even bother trying to get some from them knowing my mum would be there at 2pm with my bag of clothes and all my meds incase i did have to stay in!). I slept for 12 hours last night.
This morning I woke up with a very sore chest where I have obviously strained my chest muscles from everything that went on yesterday. It was so sore that it hurt to even tie my hair up!
Its quite scary to think that this can happen so fast. I went from being totally ok to being in a&e in less than 4hours time. I don't think some people have ever really believed me before that things can change so quickly in some with CF but now they do!
However this also means I have had to drop out of a show I was meant to be in this week as I'm just not fit enough which I was upset about earlier when I had to let them know, as the first show is Thursday-so really quite late to be pulling out! However as they said I shouldn't worry about it as my health is too important and if I even thought about turning up to anymore of the rehearsals (even if it was just to watch) they would send me straight home again to rest.
I have clinic on thursday where I will see what my lung function is doing and anything else as to whether I do need more ivs, orals or nothing.
The doctor came up with 3possible reasons for why this rather large bout of haemoptysis happened:
1. It was something residual from my last infection (as I had just finished IVs on wed)
2. It was a new infection brewing but did not yet show on my blood work
3. It was just one of those things that CF lungs can be prone to and has nothing to do with infection.
None of which offer particularly great feelings but there you go, that is life and I am home and feeling better than yesterday!
It started off well. I finished IVs on wednesday morning and was feeling great. Then from about thursday evening I started to come down with a cold, most of friday I had a sore throat from a really dry irritating cough (not productive in the slightest) and so guessed it was related to the cold! Friday evening I went out with friends to pizza hut and then back to one of their houses to see their dogs! I got home at about 10.30pm and was feeling alright bar the cold.
I woke up at about 2.15am and started coughing and thought 'thats not right', so turned my bedroom light on to discover I was coughing up blood. This continued for a good 15minutes before I rang my mum and told her I needed her to come round. We then took a trip to a&e where it had died down abit to just a few streaks of blood rather than whole mouthfuls of it. However about 20minutes after being in A&E, just as the doctor came in it started again and continued for the whole time he was with me trying to ask me questions. This is quite difficult to answer as you are coughing up blood. After they discovered I had a pink card which gave me direct access to the hospital ward where I have my CF care they decided to just send me there instead of keep me in the local hospital for observation (I think they were abit scared on how to deal with me because I have CF!). So after 2 failed attempts at a cannula being inserted and finally successful on the 3rd I was put on fluids (because my heartrate was high and was for the whole time I was in hospital!), I was then put into an ambulance to go to my normal hospital. My mum was told she could not drive me over because I had a cannula in and I was being admitted through a&e so it had to be an ambulance. So I was put in the ambulance at about 5.15am and arrived at about 6am.
There I was asked the exact same questions as I was in a&e and so repeated my answers. Despite the fact bloods were taken in my local hospital, they had to be repeated at my normal one. As the first lot were taken in a different county so they could not access them. This meant another needle because they couldnt possibly use the cannula as this was being used for fluids. I was also sent for an xray as well.
After being reviewed by the CF registrar on call he decided I could go home with a short course of tranexamic acid to help the blood clot as none of my bloodwork showed any sign of infection and as I had just finished IVs on wednesday he was reluctant to start me on more because I already have multiresistant pseudo (only sensitive to 2antibiotics now so he didnt want to reduce it more!). Also there was the condition that I had to of had no more episodes during the day before I was allowed home at about 3 or 4pm ish.
My mum and brother turned up at about 2pm and I was allowed home at about 2.30pm after my prescription had arrived from pharmacy and my doctor had confirmed all my bloods were ok. I finally got home at about 3.15pm
It was a long day yesterday. I had at most an hours sleep since getting into bed at 11pm friday night until I went to bed at 8pm saturday night. I was so exhausted that just the efforting of eating made me sick. I had very little to eat on saturday as I had no insulin in the hospital (they kept asking me if I had brought my meds in with me and when I said no because I went to a&e at 2.30am and didnt really think about it they gave me weird looks. Also hospital pharmacy just dont act fast enough on any day of the week for them to even bother trying to get some from them knowing my mum would be there at 2pm with my bag of clothes and all my meds incase i did have to stay in!). I slept for 12 hours last night.
This morning I woke up with a very sore chest where I have obviously strained my chest muscles from everything that went on yesterday. It was so sore that it hurt to even tie my hair up!
Its quite scary to think that this can happen so fast. I went from being totally ok to being in a&e in less than 4hours time. I don't think some people have ever really believed me before that things can change so quickly in some with CF but now they do!
However this also means I have had to drop out of a show I was meant to be in this week as I'm just not fit enough which I was upset about earlier when I had to let them know, as the first show is Thursday-so really quite late to be pulling out! However as they said I shouldn't worry about it as my health is too important and if I even thought about turning up to anymore of the rehearsals (even if it was just to watch) they would send me straight home again to rest.
I have clinic on thursday where I will see what my lung function is doing and anything else as to whether I do need more ivs, orals or nothing.
The doctor came up with 3possible reasons for why this rather large bout of haemoptysis happened:
1. It was something residual from my last infection (as I had just finished IVs on wed)
2. It was a new infection brewing but did not yet show on my blood work
3. It was just one of those things that CF lungs can be prone to and has nothing to do with infection.
None of which offer particularly great feelings but there you go, that is life and I am home and feeling better than yesterday!
Monday, August 29, 2011
Turning 25...
....and still not necessarily grown up!!
On Friday I turned 25 (I can't wait until next year when I can say I turn 26 on the 26th!). I was stopping at my parents house as still on IVs.
I woke up to found a birthday banner had been put up in my bedroom. This shows just how deeply I sleep as I am aware when my mum comes into do my IVs at about 5.30am enough to get my line out, apart from that I have no idea when she leaves after connecting the eclipse device or when she comes back into remove it and flush the line! On Friday she also put a birthday banner up and I really did not know she had done it.
I then went downstairs to find a small pile of presents awaiting me:
Sat in my long awaited for camp chair:
I knew I had this chair for my birthday as I picked it out. Some of my fellow scout leaders have got similar chairs and it is amazing how much more comfier they are than the cheap folding chairs you can get (the ones that are normally like 2 for £10 or similar!). This is not a cheap chair but one of the leaders has had hers for 7years and you cant tell its that old based on its condition so they are well wearing and hardy. I look forward to my next beaver sleepover/ scout camp where I can take my chair with me!! After opening this present I then proceeded to sit in it whilst opening all my birthday cards and for most of the morning.
This is a picture of all the presents that I had waiting for me when I woke up that morning! During the day I also received the zumba game on the Wii and a Sharky and George (Crimebusters of the sea!) hoody.
In the afternoon I had a buffet style party tea with some of my family and then some lovely cake:
I was pretty impressed when I saw it!!
All in all despite the IVs it was a good day!
On Friday I turned 25 (I can't wait until next year when I can say I turn 26 on the 26th!). I was stopping at my parents house as still on IVs.
I woke up to found a birthday banner had been put up in my bedroom. This shows just how deeply I sleep as I am aware when my mum comes into do my IVs at about 5.30am enough to get my line out, apart from that I have no idea when she leaves after connecting the eclipse device or when she comes back into remove it and flush the line! On Friday she also put a birthday banner up and I really did not know she had done it.
I then went downstairs to find a small pile of presents awaiting me:
Sat in my long awaited for camp chair:
I knew I had this chair for my birthday as I picked it out. Some of my fellow scout leaders have got similar chairs and it is amazing how much more comfier they are than the cheap folding chairs you can get (the ones that are normally like 2 for £10 or similar!). This is not a cheap chair but one of the leaders has had hers for 7years and you cant tell its that old based on its condition so they are well wearing and hardy. I look forward to my next beaver sleepover/ scout camp where I can take my chair with me!! After opening this present I then proceeded to sit in it whilst opening all my birthday cards and for most of the morning.
This is a picture of all the presents that I had waiting for me when I woke up that morning! During the day I also received the zumba game on the Wii and a Sharky and George (Crimebusters of the sea!) hoody.
In the afternoon I had a buffet style party tea with some of my family and then some lovely cake:
I was pretty impressed when I saw it!!
All in all despite the IVs it was a good day!
Wednesday, August 24, 2011
IVs and some thoughts
Ok, so I am now a week into my IVs. I feel better in myself, my cough is reduced generally and its becoming more of a dry cough than a productive one. Yet if you look at the clinical numbers I am actually slightly worse off than when I started last week. I will be going with how I actually feel rather than the numbers though.
Last wednesday was a very long and emotional day. I still didn't get all the answers I need and still face more tests before anything can be truly determined. My x-ray showed radiological changes in comparison to my previous years on the left hand side. This by itsself isnt necessarily anything to worry about as it could just be a patch of infection. However when placed with somethings it could also be a sign of Aspergillus becoming a problem and having to treat. One of the blood tests that would also confirm Aspergillus hadn't come back. So depending on that result and another x-ray in September could be a start of some new treatment. However this treatment can only take place if they are 100% confident it will help as the side effects can be potentially quite damaging due to my diabetes. It's a tough balance to strike, but ultimately may improve my lung function.
My vitamin levels were low. They are always low when they are tested so I wasn't surprised to hear that. However to hear that my dietician possibly wanted to come in and talk to me about it after the doctor left I was not so impressed with. I had been sat in clinic for an hour with noone coming into see me and I had heard the dietician say she had seen everyone she needed to. So she had another thing coming if she thought I was going to stick around for her to talk me after the doctor left me!! As it was I got to the hospital at 10am wednesday morning and did not leave until 4.30pm. This meant I did not get home until gone 5.30pm!!
I also expressed what I thought is pure stupidity on the Ultrasound department for allowing diabetics to have scans in the afternoon. I had not been able to eat since 8am and then they were slightly delayed in doing my scan. I was starting to feel hypo and had a bad headache for the rest of the day. I feel there should be a question on their forms when the scans are booked asking if the patient is diabetic and therefore giving them an appointment as early as possible in the day.
Annual assessments are just stressful days and its possibly more irritating that it was a month after the tests were done supposedly so all the results will be in and then they arent so you still cant discuss everything you want or need to.
Last wednesday was a very long and emotional day. I still didn't get all the answers I need and still face more tests before anything can be truly determined. My x-ray showed radiological changes in comparison to my previous years on the left hand side. This by itsself isnt necessarily anything to worry about as it could just be a patch of infection. However when placed with somethings it could also be a sign of Aspergillus becoming a problem and having to treat. One of the blood tests that would also confirm Aspergillus hadn't come back. So depending on that result and another x-ray in September could be a start of some new treatment. However this treatment can only take place if they are 100% confident it will help as the side effects can be potentially quite damaging due to my diabetes. It's a tough balance to strike, but ultimately may improve my lung function.
My vitamin levels were low. They are always low when they are tested so I wasn't surprised to hear that. However to hear that my dietician possibly wanted to come in and talk to me about it after the doctor left I was not so impressed with. I had been sat in clinic for an hour with noone coming into see me and I had heard the dietician say she had seen everyone she needed to. So she had another thing coming if she thought I was going to stick around for her to talk me after the doctor left me!! As it was I got to the hospital at 10am wednesday morning and did not leave until 4.30pm. This meant I did not get home until gone 5.30pm!!
I also expressed what I thought is pure stupidity on the Ultrasound department for allowing diabetics to have scans in the afternoon. I had not been able to eat since 8am and then they were slightly delayed in doing my scan. I was starting to feel hypo and had a bad headache for the rest of the day. I feel there should be a question on their forms when the scans are booked asking if the patient is diabetic and therefore giving them an appointment as early as possible in the day.
Annual assessments are just stressful days and its possibly more irritating that it was a month after the tests were done supposedly so all the results will be in and then they arent so you still cant discuss everything you want or need to.
Sunday, August 14, 2011
Havent blogged in awhile
Ok, so I haven't blogged in awhile. There is no reason for it, just not really had anything to say.
I've been on reward camp which was nice and chilled which is what I wanted it to be and so was good. The not so good part of the 2days is when I got stung by a wasp on my eyelid!! It flew into my face and got trapped behind my glasses and panicked resulting in the sting. That was very painful but luckily an anti-histamine tablet took down the slight swelling and my eyesight was not affected so I did not have to visit a&e (which I was threatened with if my eyesight went blurry!!). So glad I'm not allergic to wasp stings!
My parents have been away on holiday for the last 2weeks and its felt weird not seeing my mum. Normally I see her most days or every other day for a cup of tea, so to not see her for almost a fortnight was weird. It wasnt so weird not seeing my dad as I dont normally see him as he works and so unless I go round for my evening meal I dont see him except on sundays (when I always go for sunday dinner!). Its been abit of a stressful 2weeks with my mum away as well as I've had to deal with a couple of things that she would of sorted out normally (mainly a very early 6.20am wake up call because my niece woke up covered in chicken pox and her mum panicked slightly as she didnt have the car and had my other niece to get to holiday club and other things. Also my brother and partner had a major argument and I ended up with my brother for a day and night at my house basically just sat in my armchair refusing to budge from his stubbornness and she refused to budge from her stubbornness either! They are pretty much sorted again now though). Both of those things I did because I love my family but boy does it make me appreciate my mum lots! If my parents had been at home my brother would of stayed with them and his partner would of rung my mum for advice on the chicken pox and for lifts at such an early time in the morning.
I've got a busy week coming up, it should go to plan like this:
Monday- visit to see a niece and nephew I rarely see (they are my sister's husbands kids so they are adopted niece and nephew and they are staying with their grandparents which is why we can see them as they dont really live close by for us to see regularly. Only if my sister and husband are home from Cyprus (where he is posted in the RAF) or if they are with his parents).
In the evening I am going to see Smurfs 3d - very excited!
Tuesday- It is my grandmas birthday so she is coming round to my parents in the afternoon for a birthday tea which I am also invited to. My IVs are also being delivered sometime on tuesday. There is a leaders meeting at 7.30pm to discuss the programmes and other scout group stuff and I also have to squish in a visit from the best friend who comes back off holiday and wants to pick up her guinea pigs that I have been looking after.
Wednesday- Is a whole day at the hospital! I have to be there for 10.30am to start my IVs (which for those who know me may realise that means I will be on IVs for my birthday this year). Then I have clinic in the afternoon which is my Annual Assessment Review afternoon. So is the clinic where they discuss all of the results from the tests they did last month to see if any changes need to be made to my medication and plans for the year ahead to keep me as well as possible. I'm expecting upto 5 new medications based on what was discussed at the first part of the review. I am also not allowed anything to eat from 8am on wednesday until after my ultrasound scan at 2pm in the afternoon. I am also only allowed water to drink until after my scan, this is going to make for a very long day and means I have to be up early to have breakfast and a cup of tea to get me through the day. As I wont really be able to eat straight after the scan as I will be straight into clinic with the doctors!!
Thursday- is a pretty quiet daytime and in the evening I will be going to pizza hut with the same friend I am going to the cinema with on monday. I put a status on facebook last week wondering if I could convince anyone to go to pizza hut with me as I love the BBQ pizza they do. She replied saying I was thinking the exact same thing and she loves the same pizza I do as well so we organised to go. We will probably end up ordering a large cheesy bites BBQ pizza between us.
Friday- Is food shopping with my grandma and that takes all morning by the time we have had to have a cup of tea with her afterwards. As much as I love my grandma I always find friday mornings a long time! When I food shop by myself depending on when I go I can have done my shopping and be home again within an hour, sometimes within half an hour. On a friday I leave my house at about 8.15am and usually don't enter it again until 11.30am! Thats a long time for food shopping.
My weekend is currently empty of plans which is probably a good thing seeing as I will be on IVs and should really rest abit. The week after is also empty of plans apart from my birthday.
I've been on reward camp which was nice and chilled which is what I wanted it to be and so was good. The not so good part of the 2days is when I got stung by a wasp on my eyelid!! It flew into my face and got trapped behind my glasses and panicked resulting in the sting. That was very painful but luckily an anti-histamine tablet took down the slight swelling and my eyesight was not affected so I did not have to visit a&e (which I was threatened with if my eyesight went blurry!!). So glad I'm not allergic to wasp stings!
My parents have been away on holiday for the last 2weeks and its felt weird not seeing my mum. Normally I see her most days or every other day for a cup of tea, so to not see her for almost a fortnight was weird. It wasnt so weird not seeing my dad as I dont normally see him as he works and so unless I go round for my evening meal I dont see him except on sundays (when I always go for sunday dinner!). Its been abit of a stressful 2weeks with my mum away as well as I've had to deal with a couple of things that she would of sorted out normally (mainly a very early 6.20am wake up call because my niece woke up covered in chicken pox and her mum panicked slightly as she didnt have the car and had my other niece to get to holiday club and other things. Also my brother and partner had a major argument and I ended up with my brother for a day and night at my house basically just sat in my armchair refusing to budge from his stubbornness and she refused to budge from her stubbornness either! They are pretty much sorted again now though). Both of those things I did because I love my family but boy does it make me appreciate my mum lots! If my parents had been at home my brother would of stayed with them and his partner would of rung my mum for advice on the chicken pox and for lifts at such an early time in the morning.
I've got a busy week coming up, it should go to plan like this:
Monday- visit to see a niece and nephew I rarely see (they are my sister's husbands kids so they are adopted niece and nephew and they are staying with their grandparents which is why we can see them as they dont really live close by for us to see regularly. Only if my sister and husband are home from Cyprus (where he is posted in the RAF) or if they are with his parents).
In the evening I am going to see Smurfs 3d - very excited!
Tuesday- It is my grandmas birthday so she is coming round to my parents in the afternoon for a birthday tea which I am also invited to. My IVs are also being delivered sometime on tuesday. There is a leaders meeting at 7.30pm to discuss the programmes and other scout group stuff and I also have to squish in a visit from the best friend who comes back off holiday and wants to pick up her guinea pigs that I have been looking after.
Wednesday- Is a whole day at the hospital! I have to be there for 10.30am to start my IVs (which for those who know me may realise that means I will be on IVs for my birthday this year). Then I have clinic in the afternoon which is my Annual Assessment Review afternoon. So is the clinic where they discuss all of the results from the tests they did last month to see if any changes need to be made to my medication and plans for the year ahead to keep me as well as possible. I'm expecting upto 5 new medications based on what was discussed at the first part of the review. I am also not allowed anything to eat from 8am on wednesday until after my ultrasound scan at 2pm in the afternoon. I am also only allowed water to drink until after my scan, this is going to make for a very long day and means I have to be up early to have breakfast and a cup of tea to get me through the day. As I wont really be able to eat straight after the scan as I will be straight into clinic with the doctors!!
Thursday- is a pretty quiet daytime and in the evening I will be going to pizza hut with the same friend I am going to the cinema with on monday. I put a status on facebook last week wondering if I could convince anyone to go to pizza hut with me as I love the BBQ pizza they do. She replied saying I was thinking the exact same thing and she loves the same pizza I do as well so we organised to go. We will probably end up ordering a large cheesy bites BBQ pizza between us.
Friday- Is food shopping with my grandma and that takes all morning by the time we have had to have a cup of tea with her afterwards. As much as I love my grandma I always find friday mornings a long time! When I food shop by myself depending on when I go I can have done my shopping and be home again within an hour, sometimes within half an hour. On a friday I leave my house at about 8.15am and usually don't enter it again until 11.30am! Thats a long time for food shopping.
My weekend is currently empty of plans which is probably a good thing seeing as I will be on IVs and should really rest abit. The week after is also empty of plans apart from my birthday.
Monday, July 25, 2011
New Arrival
I no longer live completely alone again! Introducing Harry hamster:
Harry was chosen and named by my nephew. I promised him he could pick my new hamster after I told him I wasnt having a dog!! I also let him name him. Harry is about 7 weeks old and so is still very much a baby. He isn't used to being handled yet as you can't touch them until they are 6 weeks old otherwise the mother attacks them. However he has let me handle him a few times with no problems. He is slightly skittish and tries to jump out your hands, so I need to stay at low level with him until he is more confident but does let me pick him up.
He seems to have settled well into his new cage and was quite active this afternoon playing in his wheel. He is now snoozing but not in his house. I'm not sure if he has found his house or just isn't sure of it as he didn't have one in the pet shop.
Harry was chosen and named by my nephew. I promised him he could pick my new hamster after I told him I wasnt having a dog!! I also let him name him. Harry is about 7 weeks old and so is still very much a baby. He isn't used to being handled yet as you can't touch them until they are 6 weeks old otherwise the mother attacks them. However he has let me handle him a few times with no problems. He is slightly skittish and tries to jump out your hands, so I need to stay at low level with him until he is more confident but does let me pick him up.
He seems to have settled well into his new cage and was quite active this afternoon playing in his wheel. He is now snoozing but not in his house. I'm not sure if he has found his house or just isn't sure of it as he didn't have one in the pet shop.
Tuesday, July 5, 2011
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