Basically my operation was to hopefully cure my acid reflux to stop my feed going into my lungs and fingers crossed i'll be able to tolerate feeds better and i'll have healthier lungs! To me my life is all about protecting my lungs and looking after them for as long as i possibly can! I'm not the best with physio and nebs, i do what i need to get by, i try to find a balance between life and treatment, but my feed i was always very religious with and relied on to keep my weight! My feeds don't bother me, i connect up and it goes through whilst i'm asleep, actually part of CF treatment that doesn't take over part of the day! Before i had the op trying to put the weight on was so difficult, with not tolerating feeds too well and struggling with fortsips, my dietitian said i needed to try eat 3300 calories a day! I think normally on a good day i only physically eat about 1200-1600 cals. My feed is 1000 cals in 500mls, so i pretty much needed to get extra 1000 cals in day! I used app on my phone called myfitnesspal, (but u can use it online http://www.myfitnesspal.com/) i love it, u can just scan bar code of everything u eat, change quantity and serving size and it keeps a record on phone of how ur doing! Makes it a lot easier to keep track of what i'm eating and when i can see at end of day that i only need few hundred cals to meet my targets it spurs me on to go find something to eat!!
Night before and the morning i pretty chilled bout my op!! Luckily i was first on the list, i kinda expected to be last, cause he was expecting my op to be an awkward one! But he told me he was at his best first thing in the morning so that's definitely when i wanted my op, plus mean't i didn't have to wait around too much!!
They came down for me bout half 8, i booked in, one of the anesthetic team came to see me and was filling it his forms, i was just chatting to my mum and dad saying i wonder if i could be cheeky and ask them to fix my previous peg hole whilst they were hacking at my stomach! It didn't heal flat, it was like my second belly button but kinda cute!! I didn't hate it, i had no problem with it, but just thought it be nice to have a tiny flat scar instead!!
Never actually got round to ask the surgeon myself, saw him to wave at on corridor on way to the aesthetic room, then i was soon off too sleep, i don't even remember the count backgrounds from 10, i kinda missed the whole feeling of falling asleep, n normally i quite like that bit! Surprised myself how incredibly calm i was, but was also pretty damn proud of myself for i was coping. As a kid as soon as i put the gown on i'd start being all teary!! This take i think taking off my pretty nail varnish
So next thing i remember is coming round in recovery, i have pretty high pain threshold, when they they ask me to score things out of 10, ive never really said higher than a 6, n i've had some horrid pains. Coming round though, i was obviously still in a confused state, but i would definitely say it was a 9! Especially i coughed and the hole in my chest started bleeding n they had to put a pressure dressing on, but they got me some more morphine n pain soon settled. Then i was moved to HDU n connected up to like a million monitors!
I'm glad i went to HDU the one to one care was brilliant, they looked after me amazingly well and i felt very safe there. The op had taken bout 3hours all had gone really well, i was on recovery for quite a bit and i think i got to HDU about 2ish! They helped me sit up a bit and mum and dad came too me! Bout 4ish the physio's came, i had told her i wanted them to make sure i they got my lungs n me up n about as soon as possible but wow, 4 hours post op, give me a break, but she rolled in with my nebs, pep n acapella. To be fair though i was just about starting get annoyed by a bit of a tickly cough, so it was good timing. She was with me for about an hour and helped me finally clear my chest!
I looked might attractive on HDU, i had told aneathetist he could put in as many lines as he liked once i was asleep, but he had to use my port to put me to sleep!! He must of assumed i was right handed, cuz couldnt see much of my left hand to be honest, had canual, attached to 3 drips and an arterial line in my poor little left hand!!
Surgeon came to see me about 6pm, before he went home, to check i was ok, which i was, he said i could have some soup if i wanted and porridge in the morning, which quite surprised me, luckily i'd been able to keep my peg and i'd be able to use it in a day or two to feed! Then he said "oh and i fixed up peg hole for u" i had never asked him, but apparently the anesthetist had told him at the end of the op that i'd like it done, so he did it for me!! For a girl who wasn't quite sure about Mr Galloway at first i was very happy with him in the end, he really made me feel like he cared and that i wasn't just someone he was gonna cut up and be done with.
My mum and dad left about half 6, not before i sent dad to get my pink pillow, blanket and laptop from my room on cf ward! They nurses said i was definately pimping out HDU, most the other patients weren't able to do anything, these me laptop and phone, sat texting, facebook and then watching Grey's Anatomy on my laptop!
By 8 my chest was starting to feel crappy again, pretty normal after the aesthetic but with the pain i just needed help, so i asked them to call on call physio for me, lucky for me that night it was one of the guys who works on cf ward, so he really helped me!! The docs also gave me some oro-morph to help control pain better so if i needed to cough i could! Once on HDU i was never in agony or desperate for pain relief, it was just very uncomfortable which ever way i tried to lie, i'd had a few little naps but every time i'd fall asleep i'd wake up needing a wee. I was that much fluid, i'd got getting in and out of bed down to an art to use the comode, thank god i only needed wee's though! It's weird using the loo, next to ur bed rather than being in a loo! Im bad enough just normally on the ward with a litre of aminophyline going through.
I had regular pain relief, bloods (from the arterial line) throughout the night, i think i managed a few hours kip on and off. Worst part was when my potassium levels came back low and instead of putting up another litre of iv stuff, they wanted me to sip a lemon potassium drink, which was horrid, took me bout 45 mins to drink, cuz i could only take tiny sips. I told her never again, one of the other nurses mentioned it was pretty horrible and there was a cherry one i could have that was only in 30 mls. Cherry shots, my favourite, didn't quite taste like my favourite cherry corky's or cherry sourz but was so much better than lemon!! The oro-morph was bad enough i'd describe that as a strawberry flavoured sambuca shot! I really missed been able to use my peg and syringe it all in!
At half 7 i was awake for the day, they do hand over at the end of your bed because it's one to one nursing so i liked been able to be nosey and listen to everything that was been said about me! I pretty much put Grey's Anatomy back on and lay watching that, my physio came bout 9 and then doctors said i could go back to cf ward about 11. I'd found out there were full graphic photos in my notes of my operation and i wanted to see them, well weird seeing the inside of your stomach, but was pretty damn cool too!
I finally got back here bout 2, by time they disconnected me from all the tubes. First thing i did was get my nice comfy pjs on, them gown are so uncomfy and unflattering! They were pretty surprised on the ward with how well i was doing, think they all expected me be zonked for days! I had to stay on o2, just to protect my lungs and so they didn't have work so hard recovering!
My parents and grandparents came bit later that day, i sent mum and dad to tesco, for custard, rice pudding, strawberry moose's! I'd eaten a yogurt on HDU and that had gone down ok, i tried porridge when i came back to the ward, but i wouldn't advise that, was bit too thick, so for tea the chef on the ward made me some chicken soup. It was very strange, they fill ur stomach with with loads of gas when they do the operation, you know that feeling u have when u have wind and u drink a hot drink to try move it, well thats kind of what the soup did, but when you can't burp, well, it weird, my stomach was growling away and then it would go to burp but then disappear! I was so bloated i felt like there was two of me in the bed. I had 5 holes from the actual operation, and one from my old peg that they had fixed.
I managed half a bowl of the soup and a yogurt which i was using to get my creon on, went back to the days of been a baby when emptied creon into yogurts. Over the next few days i just wandered from loo and back, pain got lots easier, n physios took me on a couple of walks down the ward. Im not really best lover of soup to be honest and although the soup was nice, it just wasn't soaking up my appetite, to be honest how could it when i wanted a mcdonalds, toast, chicken, chinese and harvester chicken n bacon burger. So by saturday i tried some mash potato, which i could only eat a few sips of before i was full, i was having a slow feed during the day starting at about 11 till bout 4-5 in evening and it was filling my tummy up too much!
The chef's on the ward had been brilliant, coming up with ideas, made me some angel delight and tried to think of ideas for my meals, saturday night he said was gonna try chop me some chicken up really tiny, which he did, bless him, must of taken him ages, i was able eat a bit more of the mash with chicken and lots of gravy. So next day i decided change things round abit, i decided i wanted to see what i could actually eat, so i asked for a mini cottage pie, my fave! They blended the mince a little so it was quite smooth, i didn't start my feed till later that day! I actually managed 2 weetabix with warm milk and then a cottage pie for lunch and same for tea, then i had just 250 mls of my feed after i'd finished eating for the day! My day of eating went so much better and i was able to have all my dressings changed and a nice shower!
I'm quite bruised, but it will heal and the scars r so tiny, bout cm wide max, it's now a week since my op and i've surprised myself with how well i've done, i think i've surprised the docs too! Reflux wise, soup anything liquid, would always of repeated on me, n nothing, my feed hasn't come back up and when i've injected meds into my peg i've not tasted anything come back up. So fingers crossed everything has worked really well. I can walk round, still bit bent over like an old lady but i'll straighten up over next few days. My food is going down a lot easier and providing i don't get too sick of cottage pie ill be living on that for next few days. Yesterday i even managed to swallow pills again, 1 at a time, not my usual pop 10 in at a time style but i'll get there.
Mr Galloway has discharged me now and it's just up to CF team to look after me now, which they doing a pretty good job of. I've been the guinee pig for this operation for them at Manchester, i'm first CF that had this done pre transplant, so how it helps me and how i recover will be deciding factor to if anyone else gets the operation! They seem pretty surprised n happy with everything so far, lets just hope my sputum stops looking like feed and i can tolerate my feed without my chest feeling so bad, foods again, being able to eat a curry etc without it repeating on me for hours will be so nice!!
Everyone keeps asking me when i'll be coming home! Well i'm not climbing the walls yet and i know what they like here, once they got you they like to keep you, but i'm not going anywhere till im really ready cuz i wanna go home and be ready to get my life back together not go home, be ill and come back!! My lungs coming thru this pretty well so far, so think i here for at least another week! Luckily i have lots of box sets to keep me busy!! But for now, i couldn't be happier with how things av gone, really thought this was gonna be mega tough, but i'm so much stronger than i ever believed.
Thank you to the people who have kept me strong, my mum, dad and brother, my amazing friends who've text me 24/7, visited me, sent card n gifts and entertained me!!! U know who r!!! I love you xxxxx :) xxxx Times like this u really find out who u can rely on!! :) xxxxxxxxxxx
Night before and the morning i pretty chilled bout my op!! Luckily i was first on the list, i kinda expected to be last, cause he was expecting my op to be an awkward one! But he told me he was at his best first thing in the morning so that's definitely when i wanted my op, plus mean't i didn't have to wait around too much!!
They came down for me bout half 8, i booked in, one of the anesthetic team came to see me and was filling it his forms, i was just chatting to my mum and dad saying i wonder if i could be cheeky and ask them to fix my previous peg hole whilst they were hacking at my stomach! It didn't heal flat, it was like my second belly button but kinda cute!! I didn't hate it, i had no problem with it, but just thought it be nice to have a tiny flat scar instead!!
Never actually got round to ask the surgeon myself, saw him to wave at on corridor on way to the aesthetic room, then i was soon off too sleep, i don't even remember the count backgrounds from 10, i kinda missed the whole feeling of falling asleep, n normally i quite like that bit! Surprised myself how incredibly calm i was, but was also pretty damn proud of myself for i was coping. As a kid as soon as i put the gown on i'd start being all teary!! This take i think taking off my pretty nail varnish
So next thing i remember is coming round in recovery, i have pretty high pain threshold, when they they ask me to score things out of 10, ive never really said higher than a 6, n i've had some horrid pains. Coming round though, i was obviously still in a confused state, but i would definitely say it was a 9! Especially i coughed and the hole in my chest started bleeding n they had to put a pressure dressing on, but they got me some more morphine n pain soon settled. Then i was moved to HDU n connected up to like a million monitors!
I'm glad i went to HDU the one to one care was brilliant, they looked after me amazingly well and i felt very safe there. The op had taken bout 3hours all had gone really well, i was on recovery for quite a bit and i think i got to HDU about 2ish! They helped me sit up a bit and mum and dad came too me! Bout 4ish the physio's came, i had told her i wanted them to make sure i they got my lungs n me up n about as soon as possible but wow, 4 hours post op, give me a break, but she rolled in with my nebs, pep n acapella. To be fair though i was just about starting get annoyed by a bit of a tickly cough, so it was good timing. She was with me for about an hour and helped me finally clear my chest!
My mum and dad left about half 6, not before i sent dad to get my pink pillow, blanket and laptop from my room on cf ward! They nurses said i was definately pimping out HDU, most the other patients weren't able to do anything, these me laptop and phone, sat texting, facebook and then watching Grey's Anatomy on my laptop!
By 8 my chest was starting to feel crappy again, pretty normal after the aesthetic but with the pain i just needed help, so i asked them to call on call physio for me, lucky for me that night it was one of the guys who works on cf ward, so he really helped me!! The docs also gave me some oro-morph to help control pain better so if i needed to cough i could! Once on HDU i was never in agony or desperate for pain relief, it was just very uncomfortable which ever way i tried to lie, i'd had a few little naps but every time i'd fall asleep i'd wake up needing a wee. I was that much fluid, i'd got getting in and out of bed down to an art to use the comode, thank god i only needed wee's though! It's weird using the loo, next to ur bed rather than being in a loo! Im bad enough just normally on the ward with a litre of aminophyline going through.
I had regular pain relief, bloods (from the arterial line) throughout the night, i think i managed a few hours kip on and off. Worst part was when my potassium levels came back low and instead of putting up another litre of iv stuff, they wanted me to sip a lemon potassium drink, which was horrid, took me bout 45 mins to drink, cuz i could only take tiny sips. I told her never again, one of the other nurses mentioned it was pretty horrible and there was a cherry one i could have that was only in 30 mls. Cherry shots, my favourite, didn't quite taste like my favourite cherry corky's or cherry sourz but was so much better than lemon!! The oro-morph was bad enough i'd describe that as a strawberry flavoured sambuca shot! I really missed been able to use my peg and syringe it all in!
At half 7 i was awake for the day, they do hand over at the end of your bed because it's one to one nursing so i liked been able to be nosey and listen to everything that was been said about me! I pretty much put Grey's Anatomy back on and lay watching that, my physio came bout 9 and then doctors said i could go back to cf ward about 11. I'd found out there were full graphic photos in my notes of my operation and i wanted to see them, well weird seeing the inside of your stomach, but was pretty damn cool too!
I finally got back here bout 2, by time they disconnected me from all the tubes. First thing i did was get my nice comfy pjs on, them gown are so uncomfy and unflattering! They were pretty surprised on the ward with how well i was doing, think they all expected me be zonked for days! I had to stay on o2, just to protect my lungs and so they didn't have work so hard recovering!
My parents and grandparents came bit later that day, i sent mum and dad to tesco, for custard, rice pudding, strawberry moose's! I'd eaten a yogurt on HDU and that had gone down ok, i tried porridge when i came back to the ward, but i wouldn't advise that, was bit too thick, so for tea the chef on the ward made me some chicken soup. It was very strange, they fill ur stomach with with loads of gas when they do the operation, you know that feeling u have when u have wind and u drink a hot drink to try move it, well thats kind of what the soup did, but when you can't burp, well, it weird, my stomach was growling away and then it would go to burp but then disappear! I was so bloated i felt like there was two of me in the bed. I had 5 holes from the actual operation, and one from my old peg that they had fixed.
The chef's on the ward had been brilliant, coming up with ideas, made me some angel delight and tried to think of ideas for my meals, saturday night he said was gonna try chop me some chicken up really tiny, which he did, bless him, must of taken him ages, i was able eat a bit more of the mash with chicken and lots of gravy. So next day i decided change things round abit, i decided i wanted to see what i could actually eat, so i asked for a mini cottage pie, my fave! They blended the mince a little so it was quite smooth, i didn't start my feed till later that day! I actually managed 2 weetabix with warm milk and then a cottage pie for lunch and same for tea, then i had just 250 mls of my feed after i'd finished eating for the day! My day of eating went so much better and i was able to have all my dressings changed and a nice shower!
I'm quite bruised, but it will heal and the scars r so tiny, bout cm wide max, it's now a week since my op and i've surprised myself with how well i've done, i think i've surprised the docs too! Reflux wise, soup anything liquid, would always of repeated on me, n nothing, my feed hasn't come back up and when i've injected meds into my peg i've not tasted anything come back up. So fingers crossed everything has worked really well. I can walk round, still bit bent over like an old lady but i'll straighten up over next few days. My food is going down a lot easier and providing i don't get too sick of cottage pie ill be living on that for next few days. Yesterday i even managed to swallow pills again, 1 at a time, not my usual pop 10 in at a time style but i'll get there.
Mr Galloway has discharged me now and it's just up to CF team to look after me now, which they doing a pretty good job of. I've been the guinee pig for this operation for them at Manchester, i'm first CF that had this done pre transplant, so how it helps me and how i recover will be deciding factor to if anyone else gets the operation! They seem pretty surprised n happy with everything so far, lets just hope my sputum stops looking like feed and i can tolerate my feed without my chest feeling so bad, foods again, being able to eat a curry etc without it repeating on me for hours will be so nice!!
Everyone keeps asking me when i'll be coming home! Well i'm not climbing the walls yet and i know what they like here, once they got you they like to keep you, but i'm not going anywhere till im really ready cuz i wanna go home and be ready to get my life back together not go home, be ill and come back!! My lungs coming thru this pretty well so far, so think i here for at least another week! Luckily i have lots of box sets to keep me busy!! But for now, i couldn't be happier with how things av gone, really thought this was gonna be mega tough, but i'm so much stronger than i ever believed.
Thank you to the people who have kept me strong, my mum, dad and brother, my amazing friends who've text me 24/7, visited me, sent card n gifts and entertained me!!! U know who r!!! I love you xxxxx :) xxxx Times like this u really find out who u can rely on!! :) xxxxxxxxxxx
