I seem to start every blog these days with the same thing...i havent blogged in a while bla bla
so last time i blogged i was in hospital, you'll be happy to know i left there as planned the day before my harefield appointment. unfortunately to my disapointment my lung function didnt increase, infact it was 1% lower than i was when admitted which i literally dont understand one bit... i didnt care to much i felt great!
so there i was next day waking up for my harefield appointment, firstly i was an hour late waking up which mum was really pleased about...not! haha oh and to make matters worse it was snowing so typically every moron on the roads panics and decides to drive at about 10mph which made me even later picking mum up, then we had to get over to harefield avoiding the m25 in rush hour...it started off as one of those days you just shouldhave stayed in bed! lol anyways there wasnt much to worry about we werent actually late, we just didnt have time to get breakfast first butttt because i was first one at clinic and i didnt have to have an echo done after signing in and having half my bodies blood taken from me and weight and sats done etc there actually was a chance to get some breakfast...full english!! harefield appointment felt weird this time round because i knew i wasnt there to tell them how desprate i wanted lungs..quite the opposite so the day dragged like a bitch! lol
i had my lung function done again and obviously my lungs just wanted to piss me off as my lung function dropped another 1% so was down to 22% but to be fair that was better on there records as my last LF was 16% there just before i started Kalydeco back in june!
we left harefield at lunch time and headed over to my aunties as she only lives about 10 mins away so had a nice relaxing lunch chit chat sandwich on comfy sofa! was much better than the hard seats in the waiting area in clinic plus there heating was on so high we were pratically falling asleep!
so after lunch headed back and this was the longest part of the day, we waited about 2-3 hours till we saw dr carby. once i saw him though it was pretty quick and straight forward, he could see straight awya as i was walking into his room instead of being wheeled in or on oxygen, i explained how i felt about not wanting to go back on the list etc yet and my improvements, as much as he was dlighted for me and could see the change he was also very hesitant aswell and said i was still "ill enough" to need a transplant but if my quality of life had improved as much and i felt i wasnt ready for a tx yet then he was happy for me to stay off but wants to see me in 6 months and he would have me reactivated at any time, but to also be in contact if any thing changes or worsens, and to make me aware that i still have a very low lung function and im at risk with every infection. which i suppose i forget- my glass is always half full ;) lol it did make me think about it and question weather my choice to stay off the list was the right thing to do, as much as this drug has worked wonders, i still expected so much more, but saying that ive improved so much from what i had become!! the doctors always said it would "stablise me" and i feel like it has made me alot better and lets say in a safer way than i was before but now i feel like things are now stablised, i am happy though because i still have indepence. xmas is a hard time to judge as bugs are flying around everywhere and lets face it im not superhuman and i do still have cystic fibrosis and this time last year was potentially dying haha so yeah things are still 100% better...bring on the summer!
i was well and truely ba humbug this year!! i dunno why im not normally like this...i think its lack of money, and i want my house to look nice and get it finished so dont want to spend money on crappy presents that most people dont want anyways... haha plus its so stressfull trying to think what each person wants.. and seeing others stress over it...its bollocks id rather just be around my family and loved ones and enjoy xmas for the real reasons not presents, xmas is for kids and the excitement!...i may feel differently next year though haha
i spent the entire xmas feeling quite unwell, but it wasnt a typical cf unwell or chest infection, i had a normal cold like a normal person...i couldnt handle it haha my throat killed, my nose was blocked, my ears blocked everyting washorrible chest didnt feel that great aswell, was back to oxygen and wheelchair for me! the thing i was worried about the most was it turning into a chest infection...and touch wood im over it all now and so far no chets infection!
new year i decided i still didnt feel 100% to go out raving mad and lets face it, its a complate rip off, bars and clubs charge you tripple and i just wanted to have a good night....ended up being more drunk at home than i would have down going out but enjoyed it with my hubby and bestie so was a good one!! haha
now onto the crap news!
its hard for me to write this as i dont really want to believe its real...
back in may after the sad news about my friend kelly dying i had the most amazing news same day that my friend paul had got his transplant! it was such mixed emotions after hearing about kelly but was aboslutely made up for paul and his family, he has two beautiful kids and lovely wife and he had been on the tx list for about a year and half. he was one of those guys that was ALWAYS positive no matter what i know people say it about people like oh yeah there positive but he really was, he never went in a wheelchair he refused to give in, he would have is oxygen on his back and walked everywhere!! and always had a big smile on his face, we always said that when we both got our transplants and recovered we would train for a marathon, he was very sporty before he got so unwell so he couldnt wait to get back into it all, he said we could do a half marathon as ive always been lazy and might be a bit much for me to do first but we said we would do it together for charity!!
so when he got his call i was the happiest girl in the world...i wanted him to get them lungs so much.
dont really want to go into detail with things but unfortunately it didnt work as well as we had hoped there were alot of complications after and and sadly he passed away before xmas.
i hadnt heard from him since before his call as he wasnt able to get onto facebook which is mainly how we were in contact unless in hospital together then i would see him. i was in touch with a family member of his on and off and wasnt fully aware of the situation...which i now know was because paul wanted to protect me...even after everything he was going through he still had time to care about others!! he was one of the sweetest guys ever met, the kindest man i knew! very real person.
its hard to loose people as it is, but he had a place in my heart paul, i dont think ive cried this much in a long time, was such a lovely guy anyone that knew him or knows him will understand how im feeling, and it all becomes very real when stuff like this happens, selfish reasons its a bit of a reality check too! CF is such a cruel illness!
have his funeral this thursday, and im dreading it, makes it all real then and when i see his family members i know il just break down, but i cant not go, i wouldnt feel right not being there!
hopefully next week will be a better one.
xxxxxxx
so last time i blogged i was in hospital, you'll be happy to know i left there as planned the day before my harefield appointment. unfortunately to my disapointment my lung function didnt increase, infact it was 1% lower than i was when admitted which i literally dont understand one bit... i didnt care to much i felt great!
so there i was next day waking up for my harefield appointment, firstly i was an hour late waking up which mum was really pleased about...not! haha oh and to make matters worse it was snowing so typically every moron on the roads panics and decides to drive at about 10mph which made me even later picking mum up, then we had to get over to harefield avoiding the m25 in rush hour...it started off as one of those days you just shouldhave stayed in bed! lol anyways there wasnt much to worry about we werent actually late, we just didnt have time to get breakfast first butttt because i was first one at clinic and i didnt have to have an echo done after signing in and having half my bodies blood taken from me and weight and sats done etc there actually was a chance to get some breakfast...full english!! harefield appointment felt weird this time round because i knew i wasnt there to tell them how desprate i wanted lungs..quite the opposite so the day dragged like a bitch! lol
i had my lung function done again and obviously my lungs just wanted to piss me off as my lung function dropped another 1% so was down to 22% but to be fair that was better on there records as my last LF was 16% there just before i started Kalydeco back in june!
we left harefield at lunch time and headed over to my aunties as she only lives about 10 mins away so had a nice relaxing lunch chit chat sandwich on comfy sofa! was much better than the hard seats in the waiting area in clinic plus there heating was on so high we were pratically falling asleep!
so after lunch headed back and this was the longest part of the day, we waited about 2-3 hours till we saw dr carby. once i saw him though it was pretty quick and straight forward, he could see straight awya as i was walking into his room instead of being wheeled in or on oxygen, i explained how i felt about not wanting to go back on the list etc yet and my improvements, as much as he was dlighted for me and could see the change he was also very hesitant aswell and said i was still "ill enough" to need a transplant but if my quality of life had improved as much and i felt i wasnt ready for a tx yet then he was happy for me to stay off but wants to see me in 6 months and he would have me reactivated at any time, but to also be in contact if any thing changes or worsens, and to make me aware that i still have a very low lung function and im at risk with every infection. which i suppose i forget- my glass is always half full ;) lol it did make me think about it and question weather my choice to stay off the list was the right thing to do, as much as this drug has worked wonders, i still expected so much more, but saying that ive improved so much from what i had become!! the doctors always said it would "stablise me" and i feel like it has made me alot better and lets say in a safer way than i was before but now i feel like things are now stablised, i am happy though because i still have indepence. xmas is a hard time to judge as bugs are flying around everywhere and lets face it im not superhuman and i do still have cystic fibrosis and this time last year was potentially dying haha so yeah things are still 100% better...bring on the summer!
i was well and truely ba humbug this year!! i dunno why im not normally like this...i think its lack of money, and i want my house to look nice and get it finished so dont want to spend money on crappy presents that most people dont want anyways... haha plus its so stressfull trying to think what each person wants.. and seeing others stress over it...its bollocks id rather just be around my family and loved ones and enjoy xmas for the real reasons not presents, xmas is for kids and the excitement!...i may feel differently next year though haha
i spent the entire xmas feeling quite unwell, but it wasnt a typical cf unwell or chest infection, i had a normal cold like a normal person...i couldnt handle it haha my throat killed, my nose was blocked, my ears blocked everyting washorrible chest didnt feel that great aswell, was back to oxygen and wheelchair for me! the thing i was worried about the most was it turning into a chest infection...and touch wood im over it all now and so far no chets infection!
new year i decided i still didnt feel 100% to go out raving mad and lets face it, its a complate rip off, bars and clubs charge you tripple and i just wanted to have a good night....ended up being more drunk at home than i would have down going out but enjoyed it with my hubby and bestie so was a good one!! haha
now onto the crap news!
its hard for me to write this as i dont really want to believe its real...
back in may after the sad news about my friend kelly dying i had the most amazing news same day that my friend paul had got his transplant! it was such mixed emotions after hearing about kelly but was aboslutely made up for paul and his family, he has two beautiful kids and lovely wife and he had been on the tx list for about a year and half. he was one of those guys that was ALWAYS positive no matter what i know people say it about people like oh yeah there positive but he really was, he never went in a wheelchair he refused to give in, he would have is oxygen on his back and walked everywhere!! and always had a big smile on his face, we always said that when we both got our transplants and recovered we would train for a marathon, he was very sporty before he got so unwell so he couldnt wait to get back into it all, he said we could do a half marathon as ive always been lazy and might be a bit much for me to do first but we said we would do it together for charity!!
so when he got his call i was the happiest girl in the world...i wanted him to get them lungs so much.
dont really want to go into detail with things but unfortunately it didnt work as well as we had hoped there were alot of complications after and and sadly he passed away before xmas.
i hadnt heard from him since before his call as he wasnt able to get onto facebook which is mainly how we were in contact unless in hospital together then i would see him. i was in touch with a family member of his on and off and wasnt fully aware of the situation...which i now know was because paul wanted to protect me...even after everything he was going through he still had time to care about others!! he was one of the sweetest guys ever met, the kindest man i knew! very real person.
its hard to loose people as it is, but he had a place in my heart paul, i dont think ive cried this much in a long time, was such a lovely guy anyone that knew him or knows him will understand how im feeling, and it all becomes very real when stuff like this happens, selfish reasons its a bit of a reality check too! CF is such a cruel illness!
have his funeral this thursday, and im dreading it, makes it all real then and when i see his family members i know il just break down, but i cant not go, i wouldnt feel right not being there!
hopefully next week will be a better one.
xxxxxxx
Hello, my name is Paulina. I live in Poland and I'm 21 years old.
ReplyDeleteI suffer from Cystic Fibrosis. Four years ago I had a lung transplant. Feel
You on my blog. Please stay the observer. I greet you cordially.
Paulina
www.ppoolliicczzeekk.blogspot.com