Thursday, 1 July 2010
when i left the hospital they sent me home with a weeks worth of feeds and bits, i was all set to do 2 bags on my 1st night home but the hospital had forgot to give me the bit of tube that connects the 2 bags together so for the last week i have only been doing one bag a night but have got that down to having it over 2 hours so that's great.
i do my feeds around an hour or 2 after my dinner as i cant stand doing them overnight as the tube gets in the way and I'm always worried that I'm going to pull it out in my sleep or something.
Anyway i got my 1st lot of feed and bits today from homeward (suppliers) so i can now start and do 2 bags of feed a night!!!!
I weighed myself but it seems i have lost a kg! i think from that it shows that i do need 2 bags a night (2000 cal's) and maybe need to keep a better eye on my BM's and maybe need to tweak my nova rapid a bit, I have just got this new app on my iPhone for BM's and that so that should help as i always forget to write down what they are and then forget when the hospital ask me!
Going to do my 1st gym workout on Monday when Connor is at school, well i hope anyway! have to see if the working men are coming to change the front door on Monday or Tuesday. cant wait to have a lovely nice clean white door and not the nasty paint peeling brown wooden one that lets all the cold air in.
Me and Connor did some cooking today and been playing in the garden, i got the swimming pool out for him but it seemed a bit cold to let him get in it, it isn't as hot as it was yesterday but he was at school all day yesterday so he couldn't use it then.
Today he has mainly stayed in just his pants! i don't mind as its hot, I'm still in my PJ's today so how can i tell him to get dressed!
Really hungry and cant wait for my dinner today! going to make pork chops with baby new pots and salad i think for me and Connor, Matt is going to the gym tonight so he wont be eating till around 9pm when he gets in and i will be on my feed by then so i eat dinner with Connor now and not Matt in the week and at the weekend we all eat dinner together.
Friday, 18 June 2010
They wanted to ask the Dr what was going to happen and if i would need i.v's before the op so said they would ring me back.
An hour later my CF nurse rang me back and asked if i could go to clinic today so the Dr could see how i was and then i would come in Monday or Tuesday and the op doing on Tuesday!
I'm happy that its getting done but also a little off coz its so fast and now i cant go to the gym for around a month? and cant go swimming now for 3 months or when they put my button in and take the tube out.
Anyway I'm going to go and start getting ready.
Wednesday, 16 June 2010
The day was great and i loved every minute of it, everyone said it was a fab day and they all had a lovely time. my dad got upset reading his speech out and Russ (best man 2) got lots of laughs!
in the evening i changed out my dress in the jeans and t-shirt!!!!! only i could do that on my wedding day as so many people told me.
I'll add some photos of the day for you all...
Few things have been going on this last few weeks,
1st off were getting a new bathroom and a new front door were just waiting for the builder to get back to us with a start date, when the bathroom is all done I'm going shopping and getting new towels and bits to go in there so its all lovely and nice!2nd we have a dishwasher now!!!! my brother fitted it for us yesterday and I'm on my 2nd load of dishes in it (might have put things in that didn't need washing so i could use it) it isn't very loud so that's good and its also a slimline one so its really very cute looking!
3rd joined up with the gym last night in an attempt to get my LF up and out of the 30% range as I'm really not liking it being there, next papworth app isn't until 2 weeks today so that's a nice few weeks without having to worry about my LF and gives me chance to get it up with the gym. I'm starting swimming and the bike 1st and think i might join a class or two of yoga for something.
4th got my PEG date for around the end of Aug so I'm pretty angry with that as they said it would be 2 weeks after the wedding and so i thought they would be booking it in march for June time but nope they didn't book it till just now grrr!
but on the + side of things i get to enjoy swimming without a button for 2 months before not going swimming for 3 months due to having the tube in.
don't really have much more to say at the mo, I'll blog again with my 1st day at the gym next week!!!
Tuesday, 25 May 2010
That isnt long is it? i dont know where the time has gone.
Its been none stop here and i havent even had time to myself to do anything.
To moz i have to take all the bits down to the hotel so that they can set it all up on friday for us.
Got my eyebrows waxed after we have dropped everything off.
Had my nails done yesterday again but im not having them done again now, im going to do them myself. i was working it out yesterday and in a year i would spend over 550 pound to have my nails done every 2-3weeks but if i got all the bits and did it all myself then it would only cost me around 200 pound and then just buy the pots of gel as and when i need them.
Already got a few bits off ebay last night and im going to buy a bit a week.
Just got to learn to do them now!
I have been doing lots of ebaying this last week, making a bit of money and also making some room in the house!
Sold connors staire gates and highchair so thats made some room and selling some of his old clothes that dont fit him anymore, just bits like that really.
V is doing so well after her TX, its been 9 days now and she is really coming along. She is in a bit of pain but after having new lungs that to be excpected i guess.
She sure did pick a week for it tho with the hot weather, she is stuck in a stuffy hospital room with a fan on her, i dont thinik she can open the windows for infection risks?
Next time i post i will be a married woman!
Wednesday, 19 May 2010
In 9 days i will be a married lady! that is scary, very scary but also its the start of something new, being a grown up in a way...but you would think having Connor would have made me grow up, don't get me wrong it did, alot. but this isn't the same i think the main thing that makes it more grown up is that i will be changing my name, it kind of feels like i wont be me anymore....I'm not sure that even makes sence but i think the scary bit is changing my name.
We want to get a morgae in the nest few years too so we have to start saving for a deposit now so we will have a good one and then when we have lived here for 5 years we can buy the place off the council so I'm looking forward to that.
everything is looking like things are starting to go our way for once!
In other news!!!!!!!!!!!!!!!
My close friend Victoria got the call on Saturday night and got the gift of new lungs on Sunday morning!!!!! i got a text at around 5am from my friend Gemma telling me about it and i was so happy i screamed lol Matt tho there was something wrong! (i didn't get the text till around 8am when i woke up) I'm so proud of her, i was so worried while she was having the and even more so when she was still asleep before they woke her up! she is doing so well and like i say I'm just so happy for her, i talk to my mum about alot of my CF friends ( vic, gem and kay mainly) and she was so happy to hear about Victoria too!
Connor now is at pre-school Monday afternoons and Wednesday all day! he is growning up so fast! after the wedding is over with i need to start and sort out his 3rd birthday, plan and invite people and book a place or sort out a BBQ....still don't know what were going to do for him yet.
He hasn't been to well today, had a temp most of the day but the only good thing is that the wedding isn't till next week so he has a week to get better.
He looks sooooo sweet in his little pageboy suit!!!! i cant wait to see him next to Matt when they are both dressed up, going to look so cute!
I'm getting a spray tan done next week for the wedding! never had one before so fingers crossed i will look ok, if i don't then I'm screwed haha. *photos to come*
*To much on my mind to think how to spell sorry lol*
Thursday, 15 April 2010
There isn't really that much more to do i don't think, got to get the cake but as were getting that from M&S we cant order it till 2 weeks before and the only other thing i have to get is the wedding favors....Oh and we have to get our rings but Matt's mum is going to Dubai next week so she is going to get them for us as we only want plan bands so may as well save some money!
Matt has to get his best man gifts (he has 2 best men) and that's about it i think...I'm going to do my own make-up coz i didn't wanna have to pay lots for someone else to do it when i can do it myself and my hair is getting done by my bridesmaids mate who is a hairdresser so that's not going to be lots too!
Non-wedding things going on at the mo are that I'm getting me PEG (tube in my belly to do overnight feeds) put back in two weeks after the wedding as I'm now in a size 6 jeans and I'm not even filling that! i hate it and just don't want to look ill anymore, so a bit of weight and fat on me will do me good!
i think I'm a little bit more scared in a way of having it put back in because i have already had it in before and know that it is going to hurt for a few weeks after and also that it can get infected like my last one so i really done want that to happen again. i just have to be more careful i think, i just don't want to get a OCD from it lol
Been thinking about Connor's 3rd birthday this week and we are going to have a BBQ and get a bouncy castle for him, i think he will love it and also Matt will too after all it was his idea...tell a lie he wanted one for the wedding but i said no!
I'm going in hospital on the 28th of April if there is a bed at the time so i can start my i.v's before the wedding and be really well for it, I'm hoping to stay in for the 2 weeks if i can hold out for that long that is. i also have to start i.v's right after the wedding so i can be in good nick for the PEG op and then i don't want i.v's again till the winter lol
I now use contacts! also use my glasses when im in like now. i have only used the contacts 2 times so far but there good and i like them :D
Sunday, 21 March 2010
I came back in hospital on Friday for some i.v's and was meant to be going on on the Saturday, that's didn't go to plan when i had another turn on the i.v's, this time it was from Mero i.v. as gemma's words....evil i.v
so i got a temp over 40 and was so cold i couldn't stop shacking, they stripped me down and pulled my cover off and even put the air con on to cool me down! i wasn't happy at all as i was so cold to start with but they said if i didn't cool down then i could have a fit.
So i should be starting to have more i.v's on Monday and then they want to keep me till Wednesday to make sure everything is ok then i can go home and do the rest of the i.v's at home.
My friend Victoria had her 8th false call for a TX last night so that was really upsetting for me coz i just want her to get that new life so much, she is so strong and never shows that it has upset her or anything. it will be this year...it has to be.
9 weeks and 5 days till I'm a MRS! not long, there is so much i still need to do that we haven't sorted yet coz I'm not feeling gr8 but once I'm out of here i will get alot more done.
Connor came to see me today in hospital and we went out for lunch (with Matt, mum and dad too) i wont get to see him now till I'm home as he has pre-school on Mondays and Wednesday. i don't mind to much coz i know he don't like it here and gets bored easy so its not fair to keep him up here just for me.
When we came up here there was a note saying that we cant have flowers on the ward anymore :( Matt laughed and said it got him out of buying me them now! not that he did much before!
The new rooms are really nice, i'll have to get some photos before i leave. the toilet light just comes on when you open the door i love it! its all big and open, its gr8.
Going to go now but will blog again with what the next lot of i.v's are.
Tuesday, 9 March 2010
Its not fun to start with and even less with Connor, even tho he don't mean anything by messing around and banging it really isn't helping.
Yesterday Matt's mum had to come down and help out, i got a 2 hour nap out of it!
And today my mum has been down helping out altho she has gone home for an hour to put some washing on and should be back any min so i can have a bath as me and Matt and some friends are ment to be going out for a meal tonight for Matt's 25th birthday to moz but I'm really not feeling up to it but don't want to let him down as we don't get to go out much as we have Connor so i said i will come but if i don't feel well while were out we'll have to go home.
I think i have said before that i got Matt a long weekend away at center parcs this weekend from Friday to Monday, i really wanted to be well and have a good time...we'll have to see how that goes when i get back and blog about it.
I'm going back in hospital next Wednesday and I'm kinda looking forward to it (is that wrong?) as they have just re-opened the CF ward! they have been working on it since oct last year so it should be good. My friend who used to work at papworth told me she had a look at the ward before she left and said the TV are really big!
Connor is putting stuff out the cat flat....tut!
I'm having my nails done on Monday after we get back from center parcs, it will be the 1st time i have had them done in about 2 years. I'm getting them done for the wedding but want to get used to them again so having them done now. I'm also not having them done very long as i don't want them to look fake.
We have got a few more bits done for the wedding, the DJ is booked, picked what cake we want but cant order it till end of April as its from M&S, got the suits hired, booked a guy to do the photos and when I'm out of hospital or off i.v's I'm going to get the bridesmaids dresses and sort my hair and make-up and flowers but i may do them to moz while Connor is at school if i feel up to it.
Everyone keep saying i have to have a hen night, they wont drop it! I'm not sure i want one and if i did i wouldn't really want to do much as after looking after Connor all day I'm really tired so there is no way i would want to go clubbing or anything like that.
My mum said it might be coz I'm not feeling to well at the mo so i said i'll see how i feel once i have had some i.v's and then if i want a hen night we can sort something out.
I made a milkshake today........it didn't really turn out right lol so I'm going to have to look up how i make a thick one as I'm not in to thin ones.
I even put in a shot of that calgin (spelling) stuff that i got from the hospital to help with my weight but didn't end up drinking so that was a waste.
I was put on a new pill by my GP last Monday night so started taking it on the Tuesday and but the Thursday i was ill, feeling sick, tired, bad back ache and a few other things I'm not sure anyone really wants to know about! so i didn't take it yesterday or today and today I'm feeling alot better then i have been for the last few day so I'm happy about that the only down side is that i'll be on for our stay at center parcs grrr but I'm feeling better so that's the main thing.
Thursday, 4 March 2010
oh my god i keep getting so stressed out, if its not over one thing its over another, family's fighting me and Matt both sticking up for our sides and our parents adding people to the list to invite who we don't know......ARRRR!
I'm not even having a hen do because i just cant be bothered with it all, i don't really drink so don't want to go clubbing, do like spa days and all that cr*p, don't like pub crawls so that's a no and i hate all these hen do bits like 'L' plates and devil horns and stuff.
The only think i would prob do is go out for a meal and even then it wouldn't be very many people coz then it would turn in to that hen night everyone else has......and i wouldn't ever have a stripper!
But then again i might change my mind.....
Matt is going to London for his stag do, its all he has talked about, he don't care really about the wedding and hasn't done anything at all for it really its just all about his stag do, he is on the phone to his mates every day about it, grrr why do men have it so easy? i just wish he put as much in to the wedding as he is with the flipping stag do.
On another note i went to papworth yesterday after being off i.v's for 4 weeks and my weight is the same so that's some good news but my LF has dropped 7% from 44% to 37%! I'm really not happy about this as i have been working so hard to do all my pill and nebs and phyiso and it looks like its just for nothing, it feels like i have just been wasting my time.
The Dr didn't seem to bothered about it and said because i feel well in myself and are not really breathless that maybe it isn't a true % and that if I'm really not happy about it that i can come back in 2 weeks and see what its like then and if its the same or lower i can have some i.v's.
I would feel alot better having some just to get my LF back up and then maybe it will stay up now were getting out of the cold months and closer to summer!
Also if i start them on the 17th march i will be done by the last day of the month and then have April free and then I'm booked in to have some i.v's 3 weeks before the wedding so that I'm in tip top shape for it.
Also want to say a big get well soon to my friend Vic who is in hospital on her 4th week of i.v's, keep your chin up hun xxx
Tuesday, 16 February 2010
Not had a gr8 month really, had just about 4 weeks of i.v's in the end and then after a week neddle free connor gets ill and i get it off him too!
that was a week ago now and were both still a bit bunged up. the nights are the wrose, i have to sleep with my mouth open at the mo and then when i wake up my mouth is sooo dry that it really hurts.
In other news....
IM GETTING MARRIED!!!!!
not to sure when as we not booked a date yet, my mum is ringing up places today so we can go round and look at them and on friday were going dress shopping with my nan.
I tho i would be ok to do this today but my head is hurting and im tired so im going to have a nap and maybe come back to it later or another day.
Friday, 15 January 2010
Never been so happy to eat before.
I got a get well Teddy from Victoria while i was in too, i have never been so spoilt before while i have been in lol
Thank you Vic!!!!!!!!!!!
Some very said news to report on to, Jess who after waiting for over 4 years for new lungs got the called she needed at the last hour only for the wait to be to long for her. Jess passed away after fighting for nearly two weeks.
R.I.P Jessica xxx
Tuesday, 12 January 2010
Gemma made me really happy today, she sent me a balloon in the post because I'm not feeling to well in hospital at the mo.
I have been trying to put a photo up of it but i cant work out how to do that yet from my new cam lol so it will have to wait till Matt can do it for me.
anyway that's all i want this post to be, a thank you :) xxxx
Sunday, 10 January 2010
After waiting days i get that long awaited bed on one of the wards at papworth. After we dropped Connor off at my Mum's house we go to Tesco to pick up some bits to keep me going in that cell for 2 long weeks. We make it there in around an hour, the roads were pretty easy considering there was so much snow and ice around. We get to the ward that has a bed for me and we have to wait in there day room for 2 hours till my room has been cleaned and has dryed, in that time Matt went home because he had to get back to pick Connor up and put him to bed so i waited on my own for a bit and then got my room.
It wasnt that bad a room, bit old looking but this part of the hospital is so thats nothing i wasnt exceiting but it did come with a shower and toilet so that was really nice, not having to pull my little drip trolly with me down the hall way to the toilet at 2 in the morning anymore. I was very happy. After being weighted and filled in all the info sheets they started on doing my port at 12.10am! anyway had to get it over with so i could start my i.v's once that was in and bloods taken they put me on two i.v's, i know one was Septrin and the other i think was Impering (will get spelling unless someone beats me to it) i was fine till 10 mins in to the Septrin i had a really bad pain at the bottom of my left hand side chest and then it when up to my neck and i couldnt move or breath right and found it hard to talk, i was in so much pain. i have never been so scared in my life i really did think i was seeing my last night! After what seemed like an hour (more like 5 min's) of me crying out in pain and im guessing waking everyone else up on the ward the on call Dr came and gave me some Morphine for the pain and that took around a min to work and god did that help, i felt a bit dippy but i didnt feel any pain so i was happy and talking alot of rubbish i think to the poor nurse that got left with me! After about half an hour they said i looked very tired and had a look at my Sats...well they were at 68% so god knows how i was wake or anything so they got some oxygen on me pretty fast and then my Sats went to around 95% so they were happy about that. Then they wanted some more blood but didnt want it from my port but a vain! Now unless you have CF im not sure you can understand how bad that is to us, anyway i wasnt really with it so i said "Yep sure you can!" so off he went with that needle in my arm, couldnt get any on the first try but then had a go on the side of my hand and all of a sudden i came over all hot and dizzy and i just knew what was going to happen next i just had time to say it then i just missed the little hat looking bucket thing the nurse had in her hand and was sick all down the side of my bed and floor not once, not twice but three times....nice. The Dr still had the neddle in my hand so that was good and even better with me moving the needle had hit the vain! Anyway after all that i got around 3 hours sleep that night.
Thursday 7th Jan
Got woken up around 9.45am feeling very worse for ware to a Dr wanting me to go down to have a CT Scan with dye to make sure i dont have any blood clots in my lungs that might be what is giving me the pain, only thing is they need me to have a small cannula in my arm to put the dye in as they cant use my port for it. Oh what fun this will be i think to my self. So this Dr has around four or five trys before she ask's another Dr to try, she also couldnt get it in after around four trys. At this point i started to cry, i had such a bad night and i dont even know why i started to cry i dont. The pain of the the needles wasnt that bad, nothing that i couldnt put up with, i have had worse i told my self i think i was just a bit overwelemed by everything that had been going on and i was all on my own, no Matt or Connor or even my Mum with me...alone and i didnt like it. Once i had got a grip of myself another Dr came to add his handy work to my swollen, black and blue arms, he did get it in after 3 trys.
I had the CT Scan but wasnt happy, the put me in a wheelchair with oxygen...i hated even bit of it, it was like i had given up. I mean come on i could have walked for sure, i was sure i could but they wouldnt have any of it, well i say Chantelle is not doing that for a very long time! MARK MY WORDS.
Scan was all clear no blood clots or anything but they did find some infecion at the botton of my left lung so that shows the pain wasnt in my head so i was really happy with that, easy....it would be easy to get over this blip and back on my feet. They started me on more i.v's but couldnt tell you what and i came up in like a red rash so they stopped that and want to try some more the next day.
Friday 8th Jan
Didnt do much today, some more bloods and an x-ray. not much to report. Made some cards in the evering, started diff i.v's again but after them i came out in more red blobs all over me, i look like i feel in a nettle bush then feel asleep in the sun for 10 hours, so they stopped them, didnt sleep well due to being hot and ichy.
Saturday 9th Jan
Today was a better day, still red but going down slowly. Had phyiso, was ok if you can say that about phyiso at all!
Dr came to see me and said there not going to put me on anything till all the red is gone because my body will most likely keep doing this, it needs a rest. He has started me on Aminophylinne (spelling people?) for my breathless-ness, said he didnt understand why i had not had this before and i think its working so far, fingers crossed it keeps up.
When Matt and Connor came to get me we went to see my friend Laura who is 37 weeks preg before we went to lunch as i havent seen her since she was around 24 weeks. she had got big! she is having a little girl which im so happy about, i cant wait to buy some girly stuff, we had a nice chat and cup of tea and Connor and Louis her little boy who is 5 months older then Connor played in the play room. it was really nice to see her again, i wont see her again till she has had the baby!!!
Went out to lunch when Matt and Connor come and picked me up so that was really nice to spend some time with them as i not seen them since wednesday so as you can tell i had missed them very much. first time Connor had been so long without seeing me since he was born and he was a bit shy and didnt come running up to me but i could understand that, i was hooked up to lots of drips and was in a strange room and looked very odd to him i bet but after a while he came round to me and gave me a kiss and hug and asked if we could go.
When i left him to come back to the hospital it was easier for me to just jump out the car then getting Matt and Connor out, it would just upset him. I got my bag together and got out the car and gave him a kiss and told him i will see him the next day and he asked me if he was getting out but i said no your going home with daddy but mummy has to stay to get better, he didnt like that and put his head in his hands and started to cry. i closed the door gave Matt a peck on the cheek and didnt look back but i could hear him....
I dont think i can do the NG tube feeds i really cant. i really gave it my all but cant. i have asked to be booked in for the peg again because its to much for me, i cant get my head around it. i cant get the tube past the gip bit. To start with i was really angry and upset with myself for being such a silly girl and for not just getting on with it, i texted my girls vic and gemma about it and they were very nice and told me not to worry about it and that i had given it a try and that was the main thing, some people can do it and some cant...i cant do it and because of that i started to think of how hard it must have been for Jo when she was trying NG feeds, she had such a hard time and thinking about her made me cry and it hit me how much i miss her now she isnt here, she was so brave and put up such a fight to get the weight on so she could get on that TX list. she was such a fighter and i am so proud to say i was her friend, i know she would have been very proud with me even giving it one try let along 5 or 6.
Please rasie a glass or a slice of cake to Miss Piggy....The best of us by far...miss you girl.
Monday, 4 January 2010
The fact of the matter is that i have let it slip big time, i can sit here and say "oh but i cant fit it all in because i have Connor to look after" but its not that at all really, i should be doing it because it is my life and if i want to be here to see Connor grow up then I'm just going to have to suck it up and start doing them more.
What i do at the moment is insulin and night time times manly oh and Creon but i never miss Creon. i am missing out on my TOBI Neb's (do them once in a blue moon) and my DNAEs Neb's, morning pills and phyiso 2x a day.
and I'm hit and miss with my inhaler.
I'm so angry with my self and i cant keep going like this as i wont get on the TX list when i need to because you have to be fully compliant or they don't do the TX.
I have got a book and have done a page with all my meds in and then i can tick them or put a cross if i miss them.
I'm really going to try, i have done it before so i know i can if i put my mind to it.
Other news I'm waiting for a bed at papworth because I'm so tired and out of breath, i need a good rest and looking after.
I'm looking forward to some ME time too but will miss Connor more then words can say but its this or stay ill and just sit there and not playing with him or anything.
I don't want to be that kind of mum.
I'm going to join the gym soon too, well i think it will be opening up soon as it looks done. i cant wait, i hear its very good for your lungs and so is swimming so that will be what I'm doing over the next few months.
Connor is going to a new play school once I'm out of hospital as I'm fed up with the one that he is at now, there cr*p and its not good enough for him, were sending him to one that nearly twice the amount of money but its so much better for him and my dad and Matt's dad will be paying for it anyway so we don't have to worry about that at all and when he is 3 he will get it for free so its not for long.
Right I'm going and have a rest, I'll post next once I'm in hospital.
p.s happy new year everyone x