Feeling really rubbish these past few days.....not managing to get out much and feeling abit low.
Yesterday i had a visit to the dentist, simple enough,but let me tell you...this appointment has been put off for months. Y? Because i knew how hard it would be to climb the stairs there :(
I made my appointment as late as possible, so i knew town would be empty , less people to see me struggling haha. Managed to park quite close, but still jumped in my wheelchair, so i would be in a better state when i reached the dentist ( see all planned out, always thinking ;) ) Dad waited with my chair outside while me and mum climbed mount everest, thats what it felt like anyway. The stairs are so steep , i would even struggle with them years ago when i was fitter. What i should of done is wear my oxygen....but oh no,not nicnac....wish i was less stubborn!!!! I reached the top and sat down on the top step till i could catch my breath.Your heart feels like its going to rip out your chest , you cant speak, your vision goes blurry and your breathing becomes super fast and short. Even your lips go blue...thank god i suit lipstick thats all i can say haha!
When i finally calmed down, i went to reception to be greeted by the 3witches of eastwick!!!! No joke. If i wanted to be interregated i would of joined the army. "Do you pay for your treatment?" Me: "No" ,witch: "why?" Me: "Im on income support" witch: "well do you have proof?" For god sake!!!! If i could of thrown my proof in her chops i would of. :) :) Wonder if she would of treated me differently if i was wearing my oxygen? It was like she didnt believe me. Many people say i look "too well" to be ill....then i think of the peter kay joke....what do they want, a grim reaper following me round tesco????
Anyway, Dentist went ok BUT i have to go back end of June for a filling....cant wait...NOT!!!
Today wasnt much better, didnt sleep very well last night, not sure why??? So i woke up tired,headache,breathess and pretty fed up to b honest! Took my mum tesco for an eye test , but waited in the car with ollie the oxygen and a pillow off my bed ha....might as well get comfy while i wait hahaha. God i bet i looked a right wierdo in my car, even had my pjs on :). As soon as i got home ,got straight back in bed and thats were ive remained all evening. I feel like things are slipping abit, so ive started my oral antibiotics i got on friday from clinic. My night was brightened a little watchin Ronaldo score ....and basically just having a right good perve at him hahaha.
So im going too see how i get on next few days and take it from there........
Lots of love xxx
Wednesday, 25 April 2012
Friday, 20 April 2012
Todays Clinic
Clinic never really goes well for me anymore. It starts going rubbish at 8am, the time i have to get up! Some of u mite say, "god, 8am isnt THAT early", but trust me, wen ur workin with these bashed up lungs, its hard bloody work!! :)
In an hour i have to do 2 nebulisers that takes a good 20minutes, get washed,dressed,make up hair...all with lungs that are constantly remindin u there rubbish. Even brushing my teeth is a massive chore.
Anyway, my sister always comes to clinic with me , she does the driving u see :) Dont do motorways me! and Emmas a good wheelchair pusher too ;) Got to clinic at 10 and got weighed,8st 4pound woooohoooo, must b all those chicken kebabs! Lung function next,the thing i dread the most!Doctors say you shouldnt just look at numbers ,but how can you not when there so crap! A feckin flea could do better lol. So basically i fill my lungs with as much air as possible and blow into a machine as fast and as long as i can. Watching that graph is so heartbreaking, knowing your putting so much effort in and getting no were. My lung function was slightly down today, only slightly,but when there rubbish anyway ,it matters :( So today i blew 0.58 over 0.75. So u understand......thats less than a litre. Dr says a healthy girl my size should blow around 3litres)
I mentioned to the doctor i hadnt heard from the transplant team, so he kindly chased it up and told me a test is still outstanding, a CT scan, and thats why i hadnt heard from them yet! Bloody brilliant! So now i have to wait even longer ,have a CT scan,wait for the results then wait for a transplant appointment. So i reckon its going to get end of May ,June time when im listed now...we will see?
Some bloods were taken while i was there, my port was flushed (a port is a little gadget under my skin that i have all my IV antibiotics put into :), u cant see it, itsssss magic!! ha ) and the physio also showed me some leg exercises to do at home) , my fave is the buttock clenching one, ooooh errrrr!
I was sent home with some oral antibiotics just in case i start to feel super rubbish,and my next apppointment is in 2week. Hopefully my Ct scan will b booked by then. I predict i will start my IV antibiotics when i go bk, because lung function is slightly dipped.
HERE IS A PIC OF ME IN CLINIC ,LOOKIN RAVASHING IN MY OXYGEN :)
In other news me and sis had matching celtic tattoos at the back of our necks :) They mean "sister" .....We were very brave, but i was the bravest.....of course ;) xxxx
In an hour i have to do 2 nebulisers that takes a good 20minutes, get washed,dressed,make up hair...all with lungs that are constantly remindin u there rubbish. Even brushing my teeth is a massive chore.
Anyway, my sister always comes to clinic with me , she does the driving u see :) Dont do motorways me! and Emmas a good wheelchair pusher too ;) Got to clinic at 10 and got weighed,8st 4pound woooohoooo, must b all those chicken kebabs! Lung function next,the thing i dread the most!Doctors say you shouldnt just look at numbers ,but how can you not when there so crap! A feckin flea could do better lol. So basically i fill my lungs with as much air as possible and blow into a machine as fast and as long as i can. Watching that graph is so heartbreaking, knowing your putting so much effort in and getting no were. My lung function was slightly down today, only slightly,but when there rubbish anyway ,it matters :( So today i blew 0.58 over 0.75. So u understand......thats less than a litre. Dr says a healthy girl my size should blow around 3litres)
I mentioned to the doctor i hadnt heard from the transplant team, so he kindly chased it up and told me a test is still outstanding, a CT scan, and thats why i hadnt heard from them yet! Bloody brilliant! So now i have to wait even longer ,have a CT scan,wait for the results then wait for a transplant appointment. So i reckon its going to get end of May ,June time when im listed now...we will see?
Some bloods were taken while i was there, my port was flushed (a port is a little gadget under my skin that i have all my IV antibiotics put into :), u cant see it, itsssss magic!! ha ) and the physio also showed me some leg exercises to do at home) , my fave is the buttock clenching one, ooooh errrrr!
I was sent home with some oral antibiotics just in case i start to feel super rubbish,and my next apppointment is in 2week. Hopefully my Ct scan will b booked by then. I predict i will start my IV antibiotics when i go bk, because lung function is slightly dipped.
HERE IS A PIC OF ME IN CLINIC ,LOOKIN RAVASHING IN MY OXYGEN :)
In other news me and sis had matching celtic tattoos at the back of our necks :) They mean "sister" .....We were very brave, but i was the bravest.....of course ;) xxxx
Wednesday, 11 April 2012
All about NicNac
Well its almost 1am and im still awake. Nothing new there to b honest. Im usually up well past 4am. So i thought i would write a blog all about growing up with cf, for those who dont no much about me ,and wots happened in the past etc.
If it bores you ,you dont have to read it...just thought it would b useful :p
Were do i start....well basically i was born with a condition called cystic fibrosis,an inherited disease past down from my parents, and it affects organs such as the lungs,pancreas,kidneys,liver and so on. I was diagnosed pretty early on, just before my cristening. I wasnt gaining weight,and as my mums siblings had it, i was checked out. Sure enough i had it (just my feckin luck ha).
As a child i always remember being in and out of hospital, mostly for chest infections. I would go on a ward called the upper johnson ward which i thought was ace, a ward with my surname :):) Lots of bad memories of being there though, i always remember being pinned down as a kid by 2 nurses wanting to get a nasal tube in my nose down my throat...i will never forget that. I even remember what was on the tv.... that programme on a sat night with dame edna everage and her little sidekick madge :). I sobbed in the playroom for hours,while my sister scoffed her face with quality streets hahaha.
When i was on upper johnson, i had antibiotics to fight the chest infections thru a long line in my arm...I cant tell u how painful those were and the number of times they failed, they totally messed my veins up! dont no how my dads not in prison for murder to b honest :)
I had alot of time off school,but did pretty well considering. I was very private about my condition and never spoke about it to anyone...i was almost ashamed and didnt want to b different. The number of times i did PE and i wasnt fit enough...i would run round that bastard field ....even if i came last! At the age of 8,things were pretty rough, my lung function and weight dropped dramatically. Money was raised at my dads work for me to go on holiday to Florida , not sure if my parents saw this as a last holiday for me cos things had got so bad,hmmm?
When i got back i was started on a new drug called dnas,which dramatically changed my life. I was the first patient to try it in wigan , and it made such a difference. My lung function increased and i missed less school (dam!!!!ha)
Secondary school was pretty much the same... i had alot less hospital admissions though which was good, cos whenever i was poorly with a chest infection ,my mum would give me my antibiotics at home so i didnt have to go in. My mum is my carer, and shes bloody top!!! I would have IV antibiotics every 3months for two week.
Once i left school my health was pretty stable from the ages of 16 to 20.I did all the normal things teenagers do, partying,drinkin havin fun :) I was also refered to Manchester Wythenshawe adult unit for my care.
Id say i first noticed things goin abit rubbish when i reached 20.
Think it started with a nasty infection one winter. I also found out i had cfrd ( cf related diabetes) which really made me poorly. My lung function dropped from around 60% right down to 15%, and it was a very worrying time for me and my family, especially mum. I was put on home oxygen , countless nebulised antibiotics and IV antibiotics. think i was on IVs for about 10weeks! I was also started on insulin to, as my pancreas just wasnt workin the same anymore. All this was a big change for me,and a big eye opener. Growing up i always rebelled from my medication and sometimes even refused treatment. But it was different now....if i didnt do it my health was in deep shit basically.
Once i was stable, the T word was first mentioned to me.....transplant!
Seriously if i could of slapped the doctor i would have! Me and my mum sat there in utter shock unable to take it in. She was a new doctor,so i just assumed she didnt no what she was talking about and told her i didnt want to no.
Over the next few months ,it would keep getting mentioned and i couldnt keep ignoring it. Luckily my lung function had picked up to 30% , not 60, but hey better than 15!
I saw countless social workers about being listed, and after a year of discussing it i reluctantly agreed to meet with the transplant team. I met with Mo aloul the transplant co ordinator who completely intimadated me on our first meeting....think because hes so clever :). I had countless appointments with him,and discussed things and after my transplant assessment i was listed in 2006. To cut a long story short, i wasnt ready! Mentally and physically. I was still managing to go out with friends, was having more good days than bad and i did everything i bloody could to avoid bein on that list. After being listed for 18months,and no calls (thank god) i was taken off the transplant list. This was mainly my decision, i was NOT ready. I dont think i will ever b truly prepared,but back then,my back wasnt against the wall.
In the 5years i havnt been listed ive had many ups and downs,mostly downs.Two years ago i had a collapsed lung which was probably one of the toughest things ive ever been through,and it still feels like a dream. Its been hard to adapt to this way of life but i try and keep busy and positive best i can.
Ive now been off the list for around 5years and my time has come to go back on it. How do i no its time? WELL....Health wise, my lung function has slowly deteriated and im now down to around 18% ,so basically only 18% of my lungs work. I now need more iv antibiotics ,which dont work like they used to and i now need oxygen 24 7 unless im bein stubborn :p. Getting about is alot more tricky , and i havnt been shoppin since october SHOCKER HORROR haha. If i was to go anywere my oxygen saturation drop dramatically,to around 65% (should b 97-100) and my lips go blue, so theres no goin on king street dancin for this girl haha.But this is the type of thing i look forward to doin when i get my new pink sparkly lungs :), goin out with my girls again, shoppin,holidays and dating.
People take things for granted....being able to wake up in the mornin and fill there lungs with air,something im really looking forward too :):)
Well i hope i havnt bored you all to death lol....nite x :) x
If it bores you ,you dont have to read it...just thought it would b useful :p
Were do i start....well basically i was born with a condition called cystic fibrosis,an inherited disease past down from my parents, and it affects organs such as the lungs,pancreas,kidneys,liver and so on. I was diagnosed pretty early on, just before my cristening. I wasnt gaining weight,and as my mums siblings had it, i was checked out. Sure enough i had it (just my feckin luck ha).
As a child i always remember being in and out of hospital, mostly for chest infections. I would go on a ward called the upper johnson ward which i thought was ace, a ward with my surname :):) Lots of bad memories of being there though, i always remember being pinned down as a kid by 2 nurses wanting to get a nasal tube in my nose down my throat...i will never forget that. I even remember what was on the tv.... that programme on a sat night with dame edna everage and her little sidekick madge :). I sobbed in the playroom for hours,while my sister scoffed her face with quality streets hahaha.
When i was on upper johnson, i had antibiotics to fight the chest infections thru a long line in my arm...I cant tell u how painful those were and the number of times they failed, they totally messed my veins up! dont no how my dads not in prison for murder to b honest :)
I had alot of time off school,but did pretty well considering. I was very private about my condition and never spoke about it to anyone...i was almost ashamed and didnt want to b different. The number of times i did PE and i wasnt fit enough...i would run round that bastard field ....even if i came last! At the age of 8,things were pretty rough, my lung function and weight dropped dramatically. Money was raised at my dads work for me to go on holiday to Florida , not sure if my parents saw this as a last holiday for me cos things had got so bad,hmmm?
When i got back i was started on a new drug called dnas,which dramatically changed my life. I was the first patient to try it in wigan , and it made such a difference. My lung function increased and i missed less school (dam!!!!ha)
Secondary school was pretty much the same... i had alot less hospital admissions though which was good, cos whenever i was poorly with a chest infection ,my mum would give me my antibiotics at home so i didnt have to go in. My mum is my carer, and shes bloody top!!! I would have IV antibiotics every 3months for two week.
Once i left school my health was pretty stable from the ages of 16 to 20.I did all the normal things teenagers do, partying,drinkin havin fun :) I was also refered to Manchester Wythenshawe adult unit for my care.
Id say i first noticed things goin abit rubbish when i reached 20.
Think it started with a nasty infection one winter. I also found out i had cfrd ( cf related diabetes) which really made me poorly. My lung function dropped from around 60% right down to 15%, and it was a very worrying time for me and my family, especially mum. I was put on home oxygen , countless nebulised antibiotics and IV antibiotics. think i was on IVs for about 10weeks! I was also started on insulin to, as my pancreas just wasnt workin the same anymore. All this was a big change for me,and a big eye opener. Growing up i always rebelled from my medication and sometimes even refused treatment. But it was different now....if i didnt do it my health was in deep shit basically.
Once i was stable, the T word was first mentioned to me.....transplant!
Seriously if i could of slapped the doctor i would have! Me and my mum sat there in utter shock unable to take it in. She was a new doctor,so i just assumed she didnt no what she was talking about and told her i didnt want to no.
Over the next few months ,it would keep getting mentioned and i couldnt keep ignoring it. Luckily my lung function had picked up to 30% , not 60, but hey better than 15!
I saw countless social workers about being listed, and after a year of discussing it i reluctantly agreed to meet with the transplant team. I met with Mo aloul the transplant co ordinator who completely intimadated me on our first meeting....think because hes so clever :). I had countless appointments with him,and discussed things and after my transplant assessment i was listed in 2006. To cut a long story short, i wasnt ready! Mentally and physically. I was still managing to go out with friends, was having more good days than bad and i did everything i bloody could to avoid bein on that list. After being listed for 18months,and no calls (thank god) i was taken off the transplant list. This was mainly my decision, i was NOT ready. I dont think i will ever b truly prepared,but back then,my back wasnt against the wall.
In the 5years i havnt been listed ive had many ups and downs,mostly downs.Two years ago i had a collapsed lung which was probably one of the toughest things ive ever been through,and it still feels like a dream. Its been hard to adapt to this way of life but i try and keep busy and positive best i can.
Ive now been off the list for around 5years and my time has come to go back on it. How do i no its time? WELL....Health wise, my lung function has slowly deteriated and im now down to around 18% ,so basically only 18% of my lungs work. I now need more iv antibiotics ,which dont work like they used to and i now need oxygen 24 7 unless im bein stubborn :p. Getting about is alot more tricky , and i havnt been shoppin since october SHOCKER HORROR haha. If i was to go anywere my oxygen saturation drop dramatically,to around 65% (should b 97-100) and my lips go blue, so theres no goin on king street dancin for this girl haha.But this is the type of thing i look forward to doin when i get my new pink sparkly lungs :), goin out with my girls again, shoppin,holidays and dating.
People take things for granted....being able to wake up in the mornin and fill there lungs with air,something im really looking forward too :):)
Well i hope i havnt bored you all to death lol....nite x :) x
Monday, 9 April 2012
Hospital and Waiting for my appointment
Well its been a crazy few weeks people, all started on the 27th Feb when i went to see Mo aloul, my transplant co ordinator. Id been preparing myself for weeks, counting down the days. Mixed emotions really, fear being the main one. I cant express how sad i was, knowing i was goin back there after managing to b off the list for 5years (was listed 6years ago,and was listed for just over a year). Done pretty well to b off it so long though.I went there with mum and sister.
How things have changed in 5 years. This time Mo would b seeing me in a wheelchair,no make up and wearin oxygen.God i bet he got a bloody fright!!! Rewind 5years,i bounced into that room like i owned it!
Things were discussed , lung function , medication etc and it was decided that while i was in hospital (tryin an niv) i would have my transplant evaluation.
So in i went,to b prodded poked and messed with. Lots of things went on, including xrays,scans and blood tests.And thee award for the most shameful would probably b gettin my little baps out for a heart scan!oh the joys! I also started some antibiotics while i was in there, 3 times a day,which really tired me out, that and lack of sleep! Never sleep well in hospital....just not the same as home is it :(. Anyway, after a week,my fave doc ever Rowland let me home for afew days while i had a break.While i was out i managed to get plenty of rest and get my hair done cos my roots were getting beyond a joke haha. Back in i went for another week then finally finished everythin on the 14th march aaaaah. I was sent home with a welcome pack on lung transplants and lots of things to sign,for example, a sheet of paper discussing were my donor lungs may come from (age of donor,type of death), GRIM!!!
Since ive been home ive been seein my friends and keepin busy wen my body allows it. Probably pushing myself too much sometimes,but hey ho! Had a very busy week wen the sun was shining,loved it!
So thats it really, im now waiting for another appointment to see the co ordinator ,and should b listed that day if all my results are thru.
Keep u all informed x :):) x
How things have changed in 5 years. This time Mo would b seeing me in a wheelchair,no make up and wearin oxygen.God i bet he got a bloody fright!!! Rewind 5years,i bounced into that room like i owned it!
Things were discussed , lung function , medication etc and it was decided that while i was in hospital (tryin an niv) i would have my transplant evaluation.
So in i went,to b prodded poked and messed with. Lots of things went on, including xrays,scans and blood tests.And thee award for the most shameful would probably b gettin my little baps out for a heart scan!oh the joys! I also started some antibiotics while i was in there, 3 times a day,which really tired me out, that and lack of sleep! Never sleep well in hospital....just not the same as home is it :(. Anyway, after a week,my fave doc ever Rowland let me home for afew days while i had a break.While i was out i managed to get plenty of rest and get my hair done cos my roots were getting beyond a joke haha. Back in i went for another week then finally finished everythin on the 14th march aaaaah. I was sent home with a welcome pack on lung transplants and lots of things to sign,for example, a sheet of paper discussing were my donor lungs may come from (age of donor,type of death), GRIM!!!
Since ive been home ive been seein my friends and keepin busy wen my body allows it. Probably pushing myself too much sometimes,but hey ho! Had a very busy week wen the sun was shining,loved it!
So thats it really, im now waiting for another appointment to see the co ordinator ,and should b listed that day if all my results are thru.
Keep u all informed x :):) x
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