Sorry i have not posted for a long time! Been so busy and excited about my trip to Florida! I went to Florida on the 1st November 2013! I had the most amazing time and met some great people! Was deffinatly the best holiday ever! I was really well looked after and felt really safe and comfortable with the people i was with! I miss it so much after being with them 24/7 for 2 weeks! Words cant decscribe how thankfull i am for this chance as it was the main think on my 'before i kick the bucket list' haha and now i have done it! The charity is amazing and im going to be fund raising for them in the future so more people like me get the chance to go on a holiday of a life time! :) Anyways i shall stop boasting about my amazing trip!!! Please support the charity - http://www.nhfcharity.co.uk/
and here are some photos http://www.nhfcharity.co.uk/photos/index.php?sfpg=Tm92LTIwMTMvKiphZTU0NWUxMDAyYTJhMDRlYzMxYjE0NzRlNTIxNjUzZA
i have to put the link because when i put photos on my posts the blog website does not show them?? if anyone knows how to fix this please help! haha
Health update - most people (my family) use this blog and my facebook to keep up to date with my condition / operations! So here we go - i have been in hospial for 10 days (been out 1 week now) because the pesudomonus bacteria that lives happliy in my lungs (slowly destroying them.. haha) has now spread to my kidneys!!! Yes i know how is this possible?!! But it is becasue its the exact same bacteria with the same antibiotic resistance that my lung bugs have... which made it really hard to treat :/ I have hard core IV antibiotics *dettol ;)* and it seems to have got in undercontrol now thank god! kidney infections are so painful!!! like double oramorph painful haha and it still throbs a bit now! But i finished my antibiotics on Monday so hopefully i will last until at least January without needing IV's for my lungs or my kidneys!!! I have had my date for my Op moved forward to try and help my kidneys out a bit so i having it on January 16th! Please pray i stay well until then!! Then i can get it out of the way!
I have the Brompton tomorrow and the ambo is picking me up at 6am! :( i have got to see my consultant and then go to the ward to get my port flushed which should be fine and a quick trip.
I really cant wait for Christmas! I cant wait to spend time with my family and friends and just relax and not worry about anything :)
So Thanks for reading!
Chloe
*may update if anything exciting happens tomorrow* haha
Tuesday 17 December 2013
Sunday 22 September 2013
Life Really!
Hi :)
So when i last blogged i had lost my ability to swallow - and i still cant swallow anything -_-
I was so hoping it would be better right now, i had my swallow xray thing and i have moderate to severe oropharyngeal dysphagia :( but they are happy with me to keep trying to swallow as long as im careful. My swallow reflex is very delayed so the food / liquid just sits in the back of my mouth / throat and doesnt go down, so im totally reliant on NG feeds at the moment. I will be getting a PEG feeding tube in a few months if i have not improved but im going to work really hard in speech therapy so i can try and enjoy food again. The best thing that has come out of not eating is that my chest has never been so clear!! Seriously! Hardly any mucus and i hardly have to do physio anymore! Its amazing really! - cuz no food is going into my lungs!
You know what sometimes its tough being intelligent, feeling your body fail you in different ways everyday really tests your strengh and will power, especially if no doctor can tell you whats actually causing all the diseases you have! Ok rant over ;) But yea i have not 'eaten' anything in over 3months now! I have another appointment in London on tuesday to see my neurologist which is weird because i was not supposed to see him until november but he rang and asked me come see im on tuesday - so i am a little disturbed by this - hopefully good news :/ i can only hope lol I had my usual bloods taken and my creatinine levels were low which show i have low muscle mass ( i would have never of guessed) haha and i have low blood count AGAIN - as usual, its never normal due to my immune defect. And thats about it really. I will leave you with a few pikks :)
Me and Daisy :)
Some of my meds.....
Pink Med!!! :D
Bye :)
So when i last blogged i had lost my ability to swallow - and i still cant swallow anything -_-
I was so hoping it would be better right now, i had my swallow xray thing and i have moderate to severe oropharyngeal dysphagia :( but they are happy with me to keep trying to swallow as long as im careful. My swallow reflex is very delayed so the food / liquid just sits in the back of my mouth / throat and doesnt go down, so im totally reliant on NG feeds at the moment. I will be getting a PEG feeding tube in a few months if i have not improved but im going to work really hard in speech therapy so i can try and enjoy food again. The best thing that has come out of not eating is that my chest has never been so clear!! Seriously! Hardly any mucus and i hardly have to do physio anymore! Its amazing really! - cuz no food is going into my lungs!
You know what sometimes its tough being intelligent, feeling your body fail you in different ways everyday really tests your strengh and will power, especially if no doctor can tell you whats actually causing all the diseases you have! Ok rant over ;) But yea i have not 'eaten' anything in over 3months now! I have another appointment in London on tuesday to see my neurologist which is weird because i was not supposed to see him until november but he rang and asked me come see im on tuesday - so i am a little disturbed by this - hopefully good news :/ i can only hope lol I had my usual bloods taken and my creatinine levels were low which show i have low muscle mass ( i would have never of guessed) haha and i have low blood count AGAIN - as usual, its never normal due to my immune defect. And thats about it really. I will leave you with a few pikks :)
Me and Daisy :) Some of my meds..... Pink Med!!! :DBye :)
Thursday 12 September 2013
Back to College, back to reality...
Hi :)
So i started back at college on Monday, and its been great actually, apart from Lucy not being here! Its so weird and a bit lonley without my evil companion ;) My lessons are good, my class mates are great - they actually talk to me haahaa and are not totally freaked out! Which is cool :) I had my MRI results when i went to clinic and they said my muscles are very small/ wasted away and my worst affected muscle is my bum / pelvic muscles haha i have a tiny bum ;) And my calf muscles are so tiny and have been replaced with fat.... hahaaa
My swallow is still not working, i had a video X-ray of my throat / swallowing muscles and the trigger that makes you swallow is not working properly so it doesnt trigger the actual swallow so food / drink just stays in the back of my throat and if i breathe while its still there then i will be in big trouble.... So i have not eaten anything in over 28days..... hard to believe i know!!!! i miss the tastes but im not hunry.... ever! its so weird, and weird to think i get everything i need in a bag of liquid or 2 everyday! Amazing what they can do these days!
On the down side i get waves of sickness hit me througout the day :( i feel so sick i have to stop my feed and breathe through it, its awful! But the plus side......................... since i have had my NG tube my lungs have been so clear its unbelieveable! I dont need my physio hardly ever! i used to have to do it at least 2 times a day for 20mins and now maby one huff in the day and thats it! (CFers will know what i mean!) Its kind of proved to me that food / liquids have probably been going into my lungs. The consultant wanted to put in an NJ tube to replace my NG tube ( a tube into my intestines instead of just my stomach) but i said no! Because in 1 month if my swallow is not better i will be gettin a PEG feeding tube placed and that would of meant 2 procedures instead of just the PEG one so i said i would just wait for the PEG tube. I dont want extra pain/ procedures if i dont actually need them!!!
Anyways thats all for now!!! Just want to wish good luck to Lucy and everyone starting Uni this year!
Chloe :)
So i started back at college on Monday, and its been great actually, apart from Lucy not being here! Its so weird and a bit lonley without my evil companion ;) My lessons are good, my class mates are great - they actually talk to me haahaa and are not totally freaked out! Which is cool :) I had my MRI results when i went to clinic and they said my muscles are very small/ wasted away and my worst affected muscle is my bum / pelvic muscles haha i have a tiny bum ;) And my calf muscles are so tiny and have been replaced with fat.... hahaaa
My swallow is still not working, i had a video X-ray of my throat / swallowing muscles and the trigger that makes you swallow is not working properly so it doesnt trigger the actual swallow so food / drink just stays in the back of my throat and if i breathe while its still there then i will be in big trouble.... So i have not eaten anything in over 28days..... hard to believe i know!!!! i miss the tastes but im not hunry.... ever! its so weird, and weird to think i get everything i need in a bag of liquid or 2 everyday! Amazing what they can do these days!
On the down side i get waves of sickness hit me througout the day :( i feel so sick i have to stop my feed and breathe through it, its awful! But the plus side......................... since i have had my NG tube my lungs have been so clear its unbelieveable! I dont need my physio hardly ever! i used to have to do it at least 2 times a day for 20mins and now maby one huff in the day and thats it! (CFers will know what i mean!) Its kind of proved to me that food / liquids have probably been going into my lungs. The consultant wanted to put in an NJ tube to replace my NG tube ( a tube into my intestines instead of just my stomach) but i said no! Because in 1 month if my swallow is not better i will be gettin a PEG feeding tube placed and that would of meant 2 procedures instead of just the PEG one so i said i would just wait for the PEG tube. I dont want extra pain/ procedures if i dont actually need them!!!
Anyways thats all for now!!! Just want to wish good luck to Lucy and everyone starting Uni this year!
Chloe :)
Sunday 18 August 2013
Summer!!!!
Hi :)
So, since I last blogged I have settled into my new home for the summer really well! I have had a few ups and downs but i'm really happy here overall :) I have been out with my mum and sister and its been nice really :)
Of course my body had to go and spoil my summer holidays as usual... and nop, not with a chest infection but by the loss of the ability to swallow. They call it dysphagia (well thats what it said in my hospital discharge letter haha) So I cant eat / drink anything - even my drool -_- which upsets me a lot but im trying to not let it get to me and ruin my holidays :) I really miss food and its so hard not being able to eat, so isolating. Anyways here are some pictures of my new food..
So hopefully my swallow muscles will improve so I can eat again really soon, it better do anyway!!!
The rest of the summer I still have plans to go to the London dungeons, Rainforrrest café, and harrods oh and Legoland or somewhere like that with my sister :)
I also got my exam results back... I got 1A and 1D :( bit disappointed with the overall D grade but I got 2B's so I only need to retake one exam and I should have an overall B :) but I could of done so much better if I wasn't in hospital before the exam!!! grrr but I will be doing it again and getting at least a B! can you tell im a perfectionist!
Chloe :)
So, since I last blogged I have settled into my new home for the summer really well! I have had a few ups and downs but i'm really happy here overall :) I have been out with my mum and sister and its been nice really :)
Of course my body had to go and spoil my summer holidays as usual... and nop, not with a chest infection but by the loss of the ability to swallow. They call it dysphagia (well thats what it said in my hospital discharge letter haha) So I cant eat / drink anything - even my drool -_- which upsets me a lot but im trying to not let it get to me and ruin my holidays :) I really miss food and its so hard not being able to eat, so isolating. Anyways here are some pictures of my new food..
So hopefully my swallow muscles will improve so I can eat again really soon, it better do anyway!!!
The rest of the summer I still have plans to go to the London dungeons, Rainforrrest café, and harrods oh and Legoland or somewhere like that with my sister :)
I also got my exam results back... I got 1A and 1D :( bit disappointed with the overall D grade but I got 2B's so I only need to retake one exam and I should have an overall B :) but I could of done so much better if I wasn't in hospital before the exam!!! grrr but I will be doing it again and getting at least a B! can you tell im a perfectionist!
Chloe :)
Saturday 20 July 2013
Summer Holidays and Tobi Trouble
Hello :)
So in my last post i was going on about how i didnt know where i was going for the summer holidays while i wait for my own flat, well im going to a Childrens nursing place in Hindhead. I looked round and had my assessment on Thursday and it was really nice :) the little kids are so cute! So i think i will be ok there, the staff are young and lovley and the nurses are really relaxed and kind. They have a swimming pool too ;) haha yay! So yea i hope it will be ok! I think it was a bit of a blessing in discuise not being able to stay at Treloars, cuz the ammount of other students staying has increased loads so i quite happy to get a break away.
I went to Brompton on Wednesday and it went ok, apart from they are taking me off my TOBI when my supply runs out they are not going to fund it for me - because i dont have CF and in Surrey they only fund it for people with CF. So even though i last cultured pesudomonus less than a year ago i have been refused my treatment because i dont have CF.... Its soo annoying beacuse i feel so much better on TOBI and i never get chest infections while on it! They said they want sputum cultures when ever i get an infection, the trouble is due to weak cough muscles due to my muscsle disease i cant get samples without a suction macheine so i have to now apply for my local PCT to fund me one- that will be fun!!! -_- so yea really peeed off about that but i have a few months supply left so fingers crossed i can grow pesudo before it runs out lol as i have it all the time in my lungs anyways - i can taste it (i know its gross but my CF friends will know what i mean) So i hate my GP surgery right now! Wont bloody pay for something that makes me keep well!!!! Grrrr ok rant over :)
I got my immune system bloods back and my IGG levels have come up a bit since the steroids are out of my system to 4.3 i think, so they say i do deffinatly have a primary immune defeicney.... which we knew anyways. Ermmmm dunno what else to say really apart from the HEAT!!! OMG... its actually too hot to breathe! i need my mask a lot more and im sleeping all the time -_- i feel like im 90!!! and a boring old fart but im actually to knackered to breathe, my oxygen levels are lower to - my lungs are really fussy, they dont like it too cold and they dont like to too hot - i can never win! It annoys me cuz i miss out being able to muck around with my college friends and i feel like im being really boring, but no one understand how hard it is to breathe in the heat and its effects on your whole body....................... moan over sorry!!!
So yup.... i am looking forward to the summer spending time with my family and Lucy and Wishing my Bestie Amy good Luck and have a great time away - it will be amazing!!!!
Chloe
XxxxxX
So in my last post i was going on about how i didnt know where i was going for the summer holidays while i wait for my own flat, well im going to a Childrens nursing place in Hindhead. I looked round and had my assessment on Thursday and it was really nice :) the little kids are so cute! So i think i will be ok there, the staff are young and lovley and the nurses are really relaxed and kind. They have a swimming pool too ;) haha yay! So yea i hope it will be ok! I think it was a bit of a blessing in discuise not being able to stay at Treloars, cuz the ammount of other students staying has increased loads so i quite happy to get a break away.
I went to Brompton on Wednesday and it went ok, apart from they are taking me off my TOBI when my supply runs out they are not going to fund it for me - because i dont have CF and in Surrey they only fund it for people with CF. So even though i last cultured pesudomonus less than a year ago i have been refused my treatment because i dont have CF.... Its soo annoying beacuse i feel so much better on TOBI and i never get chest infections while on it! They said they want sputum cultures when ever i get an infection, the trouble is due to weak cough muscles due to my muscsle disease i cant get samples without a suction macheine so i have to now apply for my local PCT to fund me one- that will be fun!!! -_- so yea really peeed off about that but i have a few months supply left so fingers crossed i can grow pesudo before it runs out lol as i have it all the time in my lungs anyways - i can taste it (i know its gross but my CF friends will know what i mean) So i hate my GP surgery right now! Wont bloody pay for something that makes me keep well!!!! Grrrr ok rant over :)
I got my immune system bloods back and my IGG levels have come up a bit since the steroids are out of my system to 4.3 i think, so they say i do deffinatly have a primary immune defeicney.... which we knew anyways. Ermmmm dunno what else to say really apart from the HEAT!!! OMG... its actually too hot to breathe! i need my mask a lot more and im sleeping all the time -_- i feel like im 90!!! and a boring old fart but im actually to knackered to breathe, my oxygen levels are lower to - my lungs are really fussy, they dont like it too cold and they dont like to too hot - i can never win! It annoys me cuz i miss out being able to muck around with my college friends and i feel like im being really boring, but no one understand how hard it is to breathe in the heat and its effects on your whole body....................... moan over sorry!!!
So yup.... i am looking forward to the summer spending time with my family and Lucy and Wishing my Bestie Amy good Luck and have a great time away - it will be amazing!!!!
Chloe
XxxxxX
Wednesday 10 July 2013
Prom, Sun and Summer
Hi
It was my college prom last thursday and after a long day out in London at the Royal Society i was pooped! But i had a great time with my Juicy Lucy :)
On Friday i had my heart MOT at the Brompton and it was really good! So only have to go back next year, so happy that its all ok and stable :) Just got to keep going with the warfarin and oxygen :)
Its the last few weeks at treloars with Lucy.... :( i am going to miss her loads!!
Now, the gritty stuff. The stuff i hate telling you about - the bad stuff!!! I can no longer get to my bedroom or bathroom in my house due to basically no muscle left in my legs / trunk and the balancing i used to do while mum / dad were lifting me is no longer possible. We could probably manage 1 day, if that so i am going to have to go into a care home........ My college wont let me stay with them even though they are open for 50 weeks of the year and my social worker is willing to fund my placement there with 24/7 nursing staff!!! I just dont get why they wont let me stay!!!! Anyways i looked round a home today and its really not for me! They were lovley but i would have no one to talk to and nothing to do, so im really stressed right now about whats going to happen to me.
On a positive note - its my lil sisters birthday on Friday! We are taking her out in the evening so that will be nice :) Love her and her weirdness... hahah
So yea a bit stressed but looking forward to the weekend with my family :)
It was my college prom last thursday and after a long day out in London at the Royal Society i was pooped! But i had a great time with my Juicy Lucy :)
On Friday i had my heart MOT at the Brompton and it was really good! So only have to go back next year, so happy that its all ok and stable :) Just got to keep going with the warfarin and oxygen :)
Its the last few weeks at treloars with Lucy.... :( i am going to miss her loads!!
Now, the gritty stuff. The stuff i hate telling you about - the bad stuff!!! I can no longer get to my bedroom or bathroom in my house due to basically no muscle left in my legs / trunk and the balancing i used to do while mum / dad were lifting me is no longer possible. We could probably manage 1 day, if that so i am going to have to go into a care home........ My college wont let me stay with them even though they are open for 50 weeks of the year and my social worker is willing to fund my placement there with 24/7 nursing staff!!! I just dont get why they wont let me stay!!!! Anyways i looked round a home today and its really not for me! They were lovley but i would have no one to talk to and nothing to do, so im really stressed right now about whats going to happen to me.
On a positive note - its my lil sisters birthday on Friday! We are taking her out in the evening so that will be nice :) Love her and her weirdness... hahah
So yea a bit stressed but looking forward to the weekend with my family :)
Tuesday 4 June 2013
Operation + Complications and Jessie J!!
Hi
Well alot has happend since i last blogged. I had my op and everything was fine, then 2 days later the tube got blocked leaving me in agony! So i had to go back to A&E to get it sorted, sadly the tube had to be removed and im now waiting to have the surgery again..... not happy but crap happens! I also had to go back into hospital again because i kept bleeding and blood clots kept blocking all the catheters... so overall i am the most unlucky person in the world lol
'The Hole' hahah
Cute Teddy IV sticker lol
My Pet fish ;)
So after all that 'excitement' i went to Wales in half term for a break, and it was actully SUNNY! it was great and we all had a nice time - i think haha, The day after we got back mum took me and my sister to the Allstarz concert and we saw JessieJ Live! omg she is amazing and i love her even more now! haha i can relate to all her songs and her voice is stunning and she has a great attitude and personality.
So yea...... i did my Biology exam yesterday so keeping my fingers crossed i at least go a B :/ but since i have been off so much i dont think its gunna happen.
Something else really random - i got a letter from my local hospital addressed to all my specialists or the other way round i dunno but it said 'i am concerned over chloes increasing interest in her medical treatment and wanting to try new meds' or something along those lines.. HAHAHAHAH of course i am interested! Its my bloody body and my life your playing with so i am gunna ask to try the newest stuff out to see if it works to keep me out of hospital and feel better! Im not just gunna sit back and let them do nothing when i can feel my body declining! I love college, i have friends and family i dont want to be sick!! and if there is a chance a new drug routeine will work then i wanna try it and if it doesnt work then i can stop it... simples but you never know until you try! Also what they dont know is i want to know EVERYTHING and i mean everything about all my conditions as (i know its dorky) but its interesting and its my body! I want to do biomedical sicence at uni so understanding all my weird conditions is really interesting! I might even find myself and my friends a cure one day... who knows hey??? :) Rant over :) haha but fancy writing that letter? LOL interest in her own treatment.... N-E-V-E-R and the most funny thing the reply agreed! aahaha! i want to take what their on please haha!!! ;) that was a joke.. i mean a joke if any Dr is reading this ha!
Chloe :)
Well alot has happend since i last blogged. I had my op and everything was fine, then 2 days later the tube got blocked leaving me in agony! So i had to go back to A&E to get it sorted, sadly the tube had to be removed and im now waiting to have the surgery again..... not happy but crap happens! I also had to go back into hospital again because i kept bleeding and blood clots kept blocking all the catheters... so overall i am the most unlucky person in the world lol
'The Hole' hahah Cute Teddy IV sticker lol My Pet fish ;)So after all that 'excitement' i went to Wales in half term for a break, and it was actully SUNNY! it was great and we all had a nice time - i think haha, The day after we got back mum took me and my sister to the Allstarz concert and we saw JessieJ Live! omg she is amazing and i love her even more now! haha i can relate to all her songs and her voice is stunning and she has a great attitude and personality.
So yea...... i did my Biology exam yesterday so keeping my fingers crossed i at least go a B :/ but since i have been off so much i dont think its gunna happen.
Something else really random - i got a letter from my local hospital addressed to all my specialists or the other way round i dunno but it said 'i am concerned over chloes increasing interest in her medical treatment and wanting to try new meds' or something along those lines.. HAHAHAHAH of course i am interested! Its my bloody body and my life your playing with so i am gunna ask to try the newest stuff out to see if it works to keep me out of hospital and feel better! Im not just gunna sit back and let them do nothing when i can feel my body declining! I love college, i have friends and family i dont want to be sick!! and if there is a chance a new drug routeine will work then i wanna try it and if it doesnt work then i can stop it... simples but you never know until you try! Also what they dont know is i want to know EVERYTHING and i mean everything about all my conditions as (i know its dorky) but its interesting and its my body! I want to do biomedical sicence at uni so understanding all my weird conditions is really interesting! I might even find myself and my friends a cure one day... who knows hey??? :) Rant over :) haha but fancy writing that letter? LOL interest in her own treatment.... N-E-V-E-R and the most funny thing the reply agreed! aahaha! i want to take what their on please haha!!! ;) that was a joke.. i mean a joke if any Dr is reading this ha!
Chloe :)
Saturday 4 May 2013
P!nk, Surgery and treatments...
Hi :0)
Ok the highlight of my year so far... lol was the P!nk concert i went to last Sunday at London 02, omg she was amazing! From when i first fell in love with her music when i was like 10 to now i understand all the emotions in her songs. Shes amazing song writer and 'Beam me up' and 'Run' are my 2 favs at the mo as well as her more lets say upbeat stuff i listen to when i need an emotional boost. I just have a connection with music that no-one understand. Sad i know but really true. So ok i have some video and photos from the show - AMAZEBALLS! Haha
 |
Full Arena!!!!!!! <<<< HAHAHAHOk.... so My videos wont upload - suppose you will just have to actually GO SEE HER! haha. Ok so I will be having my operation on Thursday, So i have started extra toxic drugs Mwhahahah lol no just strong antibiotics that can be toxic - makes it all better you know ;) I have been on TOBI nebulisers to keep my lungs good for surgery and i feel so much better, i think TOBI works really well for my pesudo, it makes me stop being so breathless. So yea doing extra physio and stuff to try and keep me out of the ICU and of the life support as soon as possible really, they have my ICU bed booked now - thats how much confidence they have in my lungs LOL. So yea got that to look forward to plus i have my Biology exam soon! Lots to organise i just have to hope i stay healthy till the summer holidays! So here is a pic of my going crazy after and hour and a half of my evening spent doing breathing treatments....  HAHAHAnd to everyone reading please read this lil poem :) Its so true!  And to all my Fellow Lung / CF Friends....... ;)
 Ill update after surgery with some pictures if they are not to gross lol BYE :) |
Wednesday 17 April 2013
Easter Holidays, Tattoo and Tests!
So ALOT has been going on since i last blogged!
Firstly i fractured my ankle on the 2nd to last day of term, why is it always me?!? I was going my normal speed of 10mph in my chair and the eletric door sensors didnt pick up i was there, so the door closed on my foot, sheering of my £500 footplate and i am lucky to get off with such a small break! Anyways that was nearly 4 weeks ago and i have my foot out of my cast boot and its healing well - the Bone doctor told me this morning :) so yay!! Thats over with now! One Less thing to worry about!
Something more exciting now! I got my first Tatto on Friday! It took about 20-30mins and its amazing! I LOVE IT! I got the word 'breathe' with some butterflys - which always reminds is me that even though life with 26% lung function is hard, you have to appreciate each day as you will never get it back, and life is as delicate and beautiful as a butterflys wings. So while its still beautiful, respect it. Ok enough of that soppy stuff haha. And the word 'Breathe' is a bit obvious....
So here it is! :)
Yesterday I went to my Muscle hospital - The national, Queens Square in London. I saw my consultant and we spoke more about what i could have and he thinks its something i have been born with, i had 8 vials of blood taken! Yes... 8!!!
Looking back at my muscle biopsy it had glycogen in it, which suggests Pompe disease but without testing my blood to see if the enzyme is there or not we dont know. So im waiting for that result. If it comes back low, then i will have pompe disease which has been suggested to me and my family in the past. He also took some DNA samples again to check for other inherited conditions like MD and other genetic diseases. I have now been steroid free for 10months and my muscles have not improved at all, infact my hands are now weaker, though i hate to admit it! So this means that my muscle disease is not caused by steroids, and if it is i have had a severe reaction to them that has never been seen before, which is very very unlikly!! All the people who had steroid myopathy diagnosed, when the steroid treatmet stops the muscle returns very quickly, the latest is 6months and i am way past that now. So it is very unlikly to be that. So i have a lot to think about! I just hope one test comes back with a diagnosis for me! It would be so much easier!! I am also waiting for a 2 hour MRI Scan of my neck, full spine and thigh and calf muscles to see if they are built 'normally' and to see if my spine is ok due to my bladder muscle stopping working!! - worst part of my whole condition LOL So yea.... hoping the test comes back with some awnsers :)
Thanks
Chloe
Firstly i fractured my ankle on the 2nd to last day of term, why is it always me?!? I was going my normal speed of 10mph in my chair and the eletric door sensors didnt pick up i was there, so the door closed on my foot, sheering of my £500 footplate and i am lucky to get off with such a small break! Anyways that was nearly 4 weeks ago and i have my foot out of my cast boot and its healing well - the Bone doctor told me this morning :) so yay!! Thats over with now! One Less thing to worry about!
Something more exciting now! I got my first Tatto on Friday! It took about 20-30mins and its amazing! I LOVE IT! I got the word 'breathe' with some butterflys - which always reminds is me that even though life with 26% lung function is hard, you have to appreciate each day as you will never get it back, and life is as delicate and beautiful as a butterflys wings. So while its still beautiful, respect it. Ok enough of that soppy stuff haha. And the word 'Breathe' is a bit obvious....
So here it is! :) Yesterday I went to my Muscle hospital - The national, Queens Square in London. I saw my consultant and we spoke more about what i could have and he thinks its something i have been born with, i had 8 vials of blood taken! Yes... 8!!!
Looking back at my muscle biopsy it had glycogen in it, which suggests Pompe disease but without testing my blood to see if the enzyme is there or not we dont know. So im waiting for that result. If it comes back low, then i will have pompe disease which has been suggested to me and my family in the past. He also took some DNA samples again to check for other inherited conditions like MD and other genetic diseases. I have now been steroid free for 10months and my muscles have not improved at all, infact my hands are now weaker, though i hate to admit it! So this means that my muscle disease is not caused by steroids, and if it is i have had a severe reaction to them that has never been seen before, which is very very unlikly!! All the people who had steroid myopathy diagnosed, when the steroid treatmet stops the muscle returns very quickly, the latest is 6months and i am way past that now. So it is very unlikly to be that. So i have a lot to think about! I just hope one test comes back with a diagnosis for me! It would be so much easier!! I am also waiting for a 2 hour MRI Scan of my neck, full spine and thigh and calf muscles to see if they are built 'normally' and to see if my spine is ok due to my bladder muscle stopping working!! - worst part of my whole condition LOL So yea.... hoping the test comes back with some awnsers :)
Thanks
Chloe
Tuesday 26 March 2013
Lil Op happening really soon = happy Chloe
Hello :)
So i am in a happy positive mood today, whoooo :) Its only 2 days until the Easter Holidays! - this means lots of chocolate, time with my sister and family :) AND I'm seeing P!nk LIVE in a few weeks i really cant wait! Im also seeing One Direction next week.... im sad to say i have to suffer this tourture hahaha but its for my sister so seeing her happy is worth it, i love her so much and knowing i cant be with her for her whole life upsets me a lot. Anyway its a positive post!!!! I had my pre-op meeting with the anesthetist this morning and it went really well i think, we are going for a light sedation so i dont have to be put onto a vent, just my bi-pap but she said if my oxygen levels drop too much then i will wake up in the ICU and get weened off the vent slowly. We chose this so my lungs have more of a chance to not need ICU! I knew this anyway so was not suprised. To be honest i am going to do lots of extra physio, antibiotics and nebs so my lungs are the best they can be for the op and hopefully i can go home the day after or the same day! The only bad thing is that it means i have to wait for an ICU Bed to be free for me to go into afterwards... this could take a while :( But i did say i need the op as soon as cuz i am very uncomfortable ALL the time now :(
So after i will have a tube coming out of my belly just below my belly button, which will be 10000% more comfortable than the tube i have now!! and it means i can wear my skinny jeans again, yay!! haha no more leg bag! :) haha the small things make me happy.
So, yea im hoping to get a date for the op through very soon and i will update when i know anything more! here is a link to some info about what im having if you have no idea... most people dont talk about bladder issues but LOADS of people have them, so yea.... i dont really mind posting to you about it, cuz its part of my disease progression and if you know about it you wont be shocked if you see it one day poking out of my shirt lol
http://www.bladderandbowelfoundation.org/bladder/bladder-problems/suprapubic-catheter.asp
My lungs are quite good at the mo... :) still get the random pain but im used to it now, if you need to you can get used to anything! Im on extra antibiotics cuz i have a joint infection.... random i know and only i could get it haha but its getting better now thank God!
Thanks for reading!
:)
Chloe
So i am in a happy positive mood today, whoooo :) Its only 2 days until the Easter Holidays! - this means lots of chocolate, time with my sister and family :) AND I'm seeing P!nk LIVE in a few weeks i really cant wait! Im also seeing One Direction next week.... im sad to say i have to suffer this tourture hahaha but its for my sister so seeing her happy is worth it, i love her so much and knowing i cant be with her for her whole life upsets me a lot. Anyway its a positive post!!!! I had my pre-op meeting with the anesthetist this morning and it went really well i think, we are going for a light sedation so i dont have to be put onto a vent, just my bi-pap but she said if my oxygen levels drop too much then i will wake up in the ICU and get weened off the vent slowly. We chose this so my lungs have more of a chance to not need ICU! I knew this anyway so was not suprised. To be honest i am going to do lots of extra physio, antibiotics and nebs so my lungs are the best they can be for the op and hopefully i can go home the day after or the same day! The only bad thing is that it means i have to wait for an ICU Bed to be free for me to go into afterwards... this could take a while :( But i did say i need the op as soon as cuz i am very uncomfortable ALL the time now :(
So after i will have a tube coming out of my belly just below my belly button, which will be 10000% more comfortable than the tube i have now!! and it means i can wear my skinny jeans again, yay!! haha no more leg bag! :) haha the small things make me happy.
So, yea im hoping to get a date for the op through very soon and i will update when i know anything more! here is a link to some info about what im having if you have no idea... most people dont talk about bladder issues but LOADS of people have them, so yea.... i dont really mind posting to you about it, cuz its part of my disease progression and if you know about it you wont be shocked if you see it one day poking out of my shirt lol
http://www.bladderandbowelfoundation.org/bladder/bladder-problems/suprapubic-catheter.asp
My lungs are quite good at the mo... :) still get the random pain but im used to it now, if you need to you can get used to anything! Im on extra antibiotics cuz i have a joint infection.... random i know and only i could get it haha but its getting better now thank God!
Thanks for reading!
:)
Chloe
Thursday 14 March 2013
Transplant talk - in limbo
So yesterday i saw my main consultant at the Brompton and we talked about transplant....
It was not good or bad news, kinda in the middle.
So basically if my lung function stays stable at where it is now i have over 2 years to live (whooo!) This means its not worth taking the risk of transplating me yet, (in his eyes) but it will be reviewed every 3months and like normal i can contact him anytime if i get sick or want to ask questions or anything. But the thing is, when i get a chest infection i ALWAYS get really sick... like high C02 and lower oxygen levels than normal and it always causes a decline in lung function which i never get back. The risks after transplant are high but for me its quality of life over quantanty. I would rather have 5 years of a great life doing everything i want to do with little restriction than 10 years stuck like i am now needing a venitilor to breathe for me 12hours or more everyday and oxygen just to keep me alive..... In my life time i have already done more and gone through more than most people do in 50years so its definite in my eyes that quality is much better than being a total bum for a whole 'average' life hahahha
My consultant is also hoping to start me on rotated colomycin and tobramycin nebs instead of just the tobi which i think will help keep the lung function!!
I have also been of steroids for a total of around 8months! and from my heaveast i have now lost just over 14kg!! But the bad side to this is that the experiment failed... my neurologist said that if my muscle disease was from my medication, after 3months of stopping it i would see improvement and a good improvement after 6months. Its now over 8 months and i have declined since i stopped the medication. This proves that it is not the cause of my muscle disease and that it is in fact, and in their words 'organic' muscle disease. I am seeing them in April so this is not confirmed but by going by my last clinic letter this is the outcome. My muscle biopsy also showed my muscle had glucogen in it... this may me a clue. But im not saying anymore because thats all i know (well whats in the letter) and i dont know what to make of it.
So if i do actually have a muscle condition it will stop me getting a transplant.... which scares me A LOT now!!
But to be fair everything in life is uncertian and i suppose you just have to live for the day and get on with it - with occasional days of feeling sorry for yourself haha Oh and not forgetting humor! thats how i deal with EVERYTHING!! make it funny and its ok ;)
I went to a UCAS fair thing today, looking at uni's and stuff and i think i want to go to Imperial College London, best in the country for Biomedical science i hear ;) but i need three A's in my A-levels!! OMG!!! but i can always try! i getting A's and B's at the moment so you never know! I might even find a cure for myself and My friends, just maby - you know anything is possible if you try!
Chloe :)
It was not good or bad news, kinda in the middle.
So basically if my lung function stays stable at where it is now i have over 2 years to live (whooo!) This means its not worth taking the risk of transplating me yet, (in his eyes) but it will be reviewed every 3months and like normal i can contact him anytime if i get sick or want to ask questions or anything. But the thing is, when i get a chest infection i ALWAYS get really sick... like high C02 and lower oxygen levels than normal and it always causes a decline in lung function which i never get back. The risks after transplant are high but for me its quality of life over quantanty. I would rather have 5 years of a great life doing everything i want to do with little restriction than 10 years stuck like i am now needing a venitilor to breathe for me 12hours or more everyday and oxygen just to keep me alive..... In my life time i have already done more and gone through more than most people do in 50years so its definite in my eyes that quality is much better than being a total bum for a whole 'average' life hahahha
My consultant is also hoping to start me on rotated colomycin and tobramycin nebs instead of just the tobi which i think will help keep the lung function!!
I have also been of steroids for a total of around 8months! and from my heaveast i have now lost just over 14kg!! But the bad side to this is that the experiment failed... my neurologist said that if my muscle disease was from my medication, after 3months of stopping it i would see improvement and a good improvement after 6months. Its now over 8 months and i have declined since i stopped the medication. This proves that it is not the cause of my muscle disease and that it is in fact, and in their words 'organic' muscle disease. I am seeing them in April so this is not confirmed but by going by my last clinic letter this is the outcome. My muscle biopsy also showed my muscle had glucogen in it... this may me a clue. But im not saying anymore because thats all i know (well whats in the letter) and i dont know what to make of it.
So if i do actually have a muscle condition it will stop me getting a transplant.... which scares me A LOT now!!
But to be fair everything in life is uncertian and i suppose you just have to live for the day and get on with it - with occasional days of feeling sorry for yourself haha Oh and not forgetting humor! thats how i deal with EVERYTHING!! make it funny and its ok ;)
I went to a UCAS fair thing today, looking at uni's and stuff and i think i want to go to Imperial College London, best in the country for Biomedical science i hear ;) but i need three A's in my A-levels!! OMG!!! but i can always try! i getting A's and B's at the moment so you never know! I might even find a cure for myself and My friends, just maby - you know anything is possible if you try!
Chloe :)
Thursday 21 February 2013
Sorry It's been sooo Long!!
I have not blogged for ages!! So much has been going on, plus my laptop broke so yea!!
Jan was a fab month - because it was my birthday ;) lol it was nice, i had a meal out and saw loads of family that i dont get to see much so that was great! I also was in the hospital, again for antibiotics but it was not for too long so it was ok, but im going to have to have an operation soon to put a tube into my stomach to be able to drain my bladder :( quite nervous lol i know i go into hospital all the time but operations are really risky for people with bad lungs/ low lung function so thats whats scaring me most of all!!! I have to have this op because my bladder has stopped working and i actually cant pee!! So at the mo i have a normal cath so i cant wait to get rid of it!!! This is what it will look like after the op. ( found the least graphic image i could lol) its just below the belly button.
Ok so Feb... i have been in hospital for 2 weeks of IV's AGAIN!!! :( So annoyed with my lungs! they cant really cope off antibiotics which worrys me a bit but i feel great now (i have been off IV's for 4 days ish) But the good news is.... I GOT MY PICC LINE OUT!! Beacuse my port is working again! soooooo happy about this!!!!!!
This is a PICC Line
This is a port being flushed, its under the skin so no one can see it apart from a scar and a bump under the skin when its not accessed! Its so much better than PICC lines and canulars!
(photos from google cuz cant upload mine for some reason :/
So its half term... im not going to stress and so any work until i go back to college!! i need a break haha So im gunna go put on my bi-pap and go to bed now :)
Night Night :P
Jan was a fab month - because it was my birthday ;) lol it was nice, i had a meal out and saw loads of family that i dont get to see much so that was great! I also was in the hospital, again for antibiotics but it was not for too long so it was ok, but im going to have to have an operation soon to put a tube into my stomach to be able to drain my bladder :( quite nervous lol i know i go into hospital all the time but operations are really risky for people with bad lungs/ low lung function so thats whats scaring me most of all!!! I have to have this op because my bladder has stopped working and i actually cant pee!! So at the mo i have a normal cath so i cant wait to get rid of it!!! This is what it will look like after the op. ( found the least graphic image i could lol) its just below the belly button.
Ok so Feb... i have been in hospital for 2 weeks of IV's AGAIN!!! :( So annoyed with my lungs! they cant really cope off antibiotics which worrys me a bit but i feel great now (i have been off IV's for 4 days ish) But the good news is.... I GOT MY PICC LINE OUT!! Beacuse my port is working again! soooooo happy about this!!!!!!
This is a port being flushed, its under the skin so no one can see it apart from a scar and a bump under the skin when its not accessed! Its so much better than PICC lines and canulars!
(photos from google cuz cant upload mine for some reason :/
So its half term... im not going to stress and so any work until i go back to college!! i need a break haha So im gunna go put on my bi-pap and go to bed now :)
Night Night :P
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