I haven't been updating my blog, I'm not sure why as i have been in hospital alot since TX and have had the time but i guess i don't what to moan about being in hospital more now then i was before i got my new lungs. i don't want to seem ungrateful in any way because I'm not, far from it in fact, I'm so happy I'm not on oxygen and not in a wheelchair anymore, i love the fact i can play for hours with Connor without getting tired and out of breath, i can walk my dog Roxy every day, i can do the house work and even love doing it after all these years of sat on the sofa while Matt cleans, i love the fact i don't cough and that i just feel well every day that i wake up.
but with all that I'm still in and out of hospital alot. its not the lungs, there in great condition and the Dr couldn't be happier with them but the anit rejection pills I'm on have messed my bloods up a bit so until that gets sorted out it looks like papworth is going to be my 2nd home for a few months yet.
i came in on the 8th this stay and its now the 25th and I'm still here and looking at another week or so yet.
fingers crossed i don't go mad before then.
In other news Connor started school 2 weeks ago, the Dr let me home on his 1st day so i could walk him to school and back but then i had to come back to the hospital and have only seen Connor 4 times after that :( i miss him but if i don't get my bloods sorted out he wont have a mummy to walk him to school so because of that i need to stay here.....it isn't making it easier knowing that.
I'm going to start work at my dads next month doing 16 hours a week while Connors at school, i cant wait as i haven't been to work in years and years. I'm really looking forward to it, makes me feel like I'm doing something with my life and not just sat wasting it.
I'm going to try and up date this blog every week now as i think it will help me with all the hospital stays.
Sunday, 25 September 2011
Saturday, 2 July 2011
O.M.G........!!!!!
What a last few months we have had, i don't even know where i should start.
first things first i got my new lungs, and there very nice new lungs as it goes too, i got the call at 5.30am on Monday the 23rd may 2011 and went up with my mum in the ambulance and Matt and my dad followed up in my dads car, Matt's mum and dad came over to look after Connor.
when we gott there i had bloods taken and was taken to the ward i would be going on when i came out of ITC after the op, after the new lungs were all given a good once over and given the all clear i was taken down to start me new life at around 12.15ish. i shade a few tears as i said my see you soons to Matt, mum and dad and then woke up to hear people taking and felt tubes being taken out of my mouth and nose and then after a bit i could open my eyes and see my mum and Matt and i think my dad was there too...i found out it was around 10.30am on the Tuesday so had been out for nearly a whole day but it only seemed like i had close my eyes for a few mins.
i had four chest drains in, two at the front and one either of my sides and a big dressing down my chest from my collar bone area to just above my feeding button. i don't think i was really in any pain that i can think of at that time but i was being sick once i started to eat or drink anything so on the second day (Wednesday) they stopped my morphine and just had me on iv paracetamol and tramadol, also on the Wednesday they took out the two front drains and then the next two the day after that.
i was doing well but as it sounded like i had some gunk stuck i was given a bronch on the Friday and felt much better and not gunky after that and then was taking to the post op ward on the Saturday were i stayed for nearly two weeks and then was sent home! i was in hospital altogether for 17 days, i was told i would be in hospital for around a month so i was very happy that i was doing so well that i could be sent home after such a short stay. i must have been doing very well indeed.
since then I'm getting stronger and stronger and have been back in hospital for another bronch at 3 weeks and now I'm back in as my LF has dropped but apart from that everything else is great so there not to sure whats going on but to be on the safe side they have got me in again to have 3 days of iv 500mg steroids and a bronch at the end to rule out any rejection.
apart from this little blip I'm doing so well and I'm so proud of myself and cant wait till I'm fully healed and can start living my life and getting a job and running and playing with Connor, there is so much and I'm just so happy i was given this chance of a 2nd life with Connor and Matt.
that's the gist of it but i will update more as and when it comes back to me as the first week was a bit of a bluer to me as i was very sleepy and not really with it much.
first things first i got my new lungs, and there very nice new lungs as it goes too, i got the call at 5.30am on Monday the 23rd may 2011 and went up with my mum in the ambulance and Matt and my dad followed up in my dads car, Matt's mum and dad came over to look after Connor.
when we gott there i had bloods taken and was taken to the ward i would be going on when i came out of ITC after the op, after the new lungs were all given a good once over and given the all clear i was taken down to start me new life at around 12.15ish. i shade a few tears as i said my see you soons to Matt, mum and dad and then woke up to hear people taking and felt tubes being taken out of my mouth and nose and then after a bit i could open my eyes and see my mum and Matt and i think my dad was there too...i found out it was around 10.30am on the Tuesday so had been out for nearly a whole day but it only seemed like i had close my eyes for a few mins.
i had four chest drains in, two at the front and one either of my sides and a big dressing down my chest from my collar bone area to just above my feeding button. i don't think i was really in any pain that i can think of at that time but i was being sick once i started to eat or drink anything so on the second day (Wednesday) they stopped my morphine and just had me on iv paracetamol and tramadol, also on the Wednesday they took out the two front drains and then the next two the day after that.
i was doing well but as it sounded like i had some gunk stuck i was given a bronch on the Friday and felt much better and not gunky after that and then was taking to the post op ward on the Saturday were i stayed for nearly two weeks and then was sent home! i was in hospital altogether for 17 days, i was told i would be in hospital for around a month so i was very happy that i was doing so well that i could be sent home after such a short stay. i must have been doing very well indeed.
since then I'm getting stronger and stronger and have been back in hospital for another bronch at 3 weeks and now I'm back in as my LF has dropped but apart from that everything else is great so there not to sure whats going on but to be on the safe side they have got me in again to have 3 days of iv 500mg steroids and a bronch at the end to rule out any rejection.
apart from this little blip I'm doing so well and I'm so proud of myself and cant wait till I'm fully healed and can start living my life and getting a job and running and playing with Connor, there is so much and I'm just so happy i was given this chance of a 2nd life with Connor and Matt.
that's the gist of it but i will update more as and when it comes back to me as the first week was a bit of a bluer to me as i was very sleepy and not really with it much.
Tuesday, 26 April 2011
Not A Good Week.
Not a good week at all, i started i.v's on Wednesday 20th April but got to do them all at home so didn't need a stay in hospital.
I'm feeling a little better so that's a good thing but i have a dry cough now that's driving me mad!
My great auntie Pat passed away on Saturday after a hard battle with cancer, she hadn't been well before they found the cancer. we are all very upset, my mum and nan cried so much :( but she is not in pain now so that's the main thing.
xxxx
I'm feeling a little better so that's a good thing but i have a dry cough now that's driving me mad!
My great auntie Pat passed away on Saturday after a hard battle with cancer, she hadn't been well before they found the cancer. we are all very upset, my mum and nan cried so much :( but she is not in pain now so that's the main thing.
xxxx
Tuesday, 19 April 2011
Not Feeling To Chipper
I'm feeling a bit off today so thought it was best to ring the hospital and start some iv's as i know i have to make sure my CRP is down now ready for TX so its best to be on the side of caution really.
I don't think they will keep me, they need the beds and i don't want or need to stay in but to be on the safe size i will be taking a bag with me just in case.
Today has been so stressful with Connor and Matt, Matt's stressed i think because he is worrying about me and he is trying to do all the house work and look after me and Connor and Connor is at that age where he is pushing the line to see how far he can go. All that makes for a stressful house to be in.
I wish i get the call soon so i can start being a real mum to Connor again and Matt can go back to work, life is just at a stand still and its not nice, its not living its just surviving.
I don't think they will keep me, they need the beds and i don't want or need to stay in but to be on the safe size i will be taking a bag with me just in case.
Today has been so stressful with Connor and Matt, Matt's stressed i think because he is worrying about me and he is trying to do all the house work and look after me and Connor and Connor is at that age where he is pushing the line to see how far he can go. All that makes for a stressful house to be in.
I wish i get the call soon so i can start being a real mum to Connor again and Matt can go back to work, life is just at a stand still and its not nice, its not living its just surviving.
Saturday, 16 April 2011
Transplant Bag
What to put in my bag, i cant think what to put in. I have had a lot of friends tell me what they put in but i still don't have a clue so still don't have a bag packed after 8 days of being on the list.
I will tell you what i have already got and what I'm going to get to put in and then let me know if there is anything else you can all think of.
* 2 new sets of vest/shorts pj's in a bigger size (when it gets cold i will add a set of long pj's too)
* Dressing gown/slippers
* 2 sets of clothes and a pair of trainers for once I'm up and about
* Flannel
* Towel, bath and hand.
* New toothbrush (not elec) and new tooth paste
* New pack of baby wipes and face wipes
* Pack of 8 new disposable razors
* New shaving gel
* Shampoo and conditioner
* New hand gel stuff for bugs
* Body wash/deodorant/cotton buds/small make-up bag/new lip sil
* E45 cream
* Hair brush/bands/clips
* DS game
* Note pad and pen
* Puzzle books
Bits to put in on the night
* Snacks/drinks
* Mobile phone + charger
* Laptop
* Mags/books
* Meds that I'm on
(But some bits in for Matt for a few days too)
I cant think of anything else at the moment, can anyone else add to that?
I will tell you what i have already got and what I'm going to get to put in and then let me know if there is anything else you can all think of.
* 2 new sets of vest/shorts pj's in a bigger size (when it gets cold i will add a set of long pj's too)
* Dressing gown/slippers
* 2 sets of clothes and a pair of trainers for once I'm up and about
* Flannel
* Towel, bath and hand.
* New toothbrush (not elec) and new tooth paste
* New pack of baby wipes and face wipes
* Pack of 8 new disposable razors
* New shaving gel
* Shampoo and conditioner
* New hand gel stuff for bugs
* Body wash/deodorant/cotton buds/small make-up bag/new lip sil
* E45 cream
* Hair brush/bands/clips
* DS game
* Note pad and pen
* Puzzle books
Bits to put in on the night
* Snacks/drinks
* Mobile phone + charger
* Laptop
* Mags/books
* Meds that I'm on
(But some bits in for Matt for a few days too)
I cant think of anything else at the moment, can anyone else add to that?
Tuesday, 12 April 2011
Life As We Know It
This last week has really been in the fast lane and so much has happened.
First we found out on Friday 8th April that I'm now on the active list and now just have to wait for a phone call from a privet/withheld number.
I'm not at all freaking out about it, I'm really not expecting the call if you can do that? might just be me being odd, everyone else might be running around like a headless chicken (*sad face* - will come back to that one) I'm very happy and clam about it all and just being too laid back maybe? i haven't even packed my TX bag yet, but in all fairness i have started! (New face wipes,tooth brush,tooth paste and baby wipes got) but on the other hand there not even in a bag yet.
Coming back to the *sad face*, my mum and dad have been on holiday all week and me and my brothers have been looking after the dogs and chickens, i.e feeding and cleaning them and harry was at home anyway so they were ok and the day before they got home (Friday) we found a dead chicken! stiff as a board she was, poor nanny's chicken as said by Connor when he saw the chicken. anyway the inconsiderate chicken passed away right at the back of the chicken pen so it meant someone had to get in there and get her out...Lewis got the short straw and with some marigolds he went in and got the chicken out and popped her in a black bin bag and then took her and put her in a biffa bin - very dignified send off...not.
Saturday we picked my mum and dad up from the airport and broke the news of the chickens passing, mum was a little upset but this is the 3rd chicken to pass away now so i think she is ok with it, the first time she cried so much that you would think it was one of her children or even a dog that had gone.
Anyway Connor was with Matt's mum and dad all day Saturday and he come home not very well, he was sick 2 times in the day and then i lost count of the times he was sick in the night but Sunday looked like a better day and he wasn't sick so we thought he was over it...we was wrong and he was up 4 times Sunday night being sick so no one had a good sleep.
On Monday morning at 8am we took him to the A&E as we was worried me might be dehydrated as he wasn't eating or drinking much but turned out he wasn't and just had a viral infection and if he wasn't any better to bring him back in for some penicillin. He woke up today really happy and back to his old self, that was until he started to get the runs! not pretty and not nice, good job Matt is around to sort Connor out and for once maybe my CF has gotten me out of a nasty job.....?
My tattoo is healing up really nice and I'm really happy with them, will upload a photo once my camera is fixed, all the photos i have at the mo are taken on my iPhone and i can upload them from there at the mo.
First we found out on Friday 8th April that I'm now on the active list and now just have to wait for a phone call from a privet/withheld number.
I'm not at all freaking out about it, I'm really not expecting the call if you can do that? might just be me being odd, everyone else might be running around like a headless chicken (*sad face* - will come back to that one) I'm very happy and clam about it all and just being too laid back maybe? i haven't even packed my TX bag yet, but in all fairness i have started! (New face wipes,tooth brush,tooth paste and baby wipes got) but on the other hand there not even in a bag yet.
Coming back to the *sad face*, my mum and dad have been on holiday all week and me and my brothers have been looking after the dogs and chickens, i.e feeding and cleaning them and harry was at home anyway so they were ok and the day before they got home (Friday) we found a dead chicken! stiff as a board she was, poor nanny's chicken as said by Connor when he saw the chicken. anyway the inconsiderate chicken passed away right at the back of the chicken pen so it meant someone had to get in there and get her out...Lewis got the short straw and with some marigolds he went in and got the chicken out and popped her in a black bin bag and then took her and put her in a biffa bin - very dignified send off...not.
Saturday we picked my mum and dad up from the airport and broke the news of the chickens passing, mum was a little upset but this is the 3rd chicken to pass away now so i think she is ok with it, the first time she cried so much that you would think it was one of her children or even a dog that had gone.
Anyway Connor was with Matt's mum and dad all day Saturday and he come home not very well, he was sick 2 times in the day and then i lost count of the times he was sick in the night but Sunday looked like a better day and he wasn't sick so we thought he was over it...we was wrong and he was up 4 times Sunday night being sick so no one had a good sleep.
On Monday morning at 8am we took him to the A&E as we was worried me might be dehydrated as he wasn't eating or drinking much but turned out he wasn't and just had a viral infection and if he wasn't any better to bring him back in for some penicillin. He woke up today really happy and back to his old self, that was until he started to get the runs! not pretty and not nice, good job Matt is around to sort Connor out and for once maybe my CF has gotten me out of a nasty job.....?
My tattoo is healing up really nice and I'm really happy with them, will upload a photo once my camera is fixed, all the photos i have at the mo are taken on my iPhone and i can upload them from there at the mo.
Wednesday, 6 April 2011
Facebook Group And Tattoos
I have set up a facebook group so everyone on my facebook will know when i have my transplant.
Matt is going to keep it up to date when i get the call and then on how I'm doing after, its better this way instead of him text/facebooking all of my friends personally.
I'm a bit upset with it at the mo tho as around 15 people have left and one asked me to take her off it, i didn't want to piss anyone off with it i you tho that since there on my facebook then they would at least want to know how i am doing...maybe they shouldn't be on my facebook to start with?
I got two tattoos done last night, Connor on my right wrist and Matt on my left wrist :) I'm really happy with them and it was the 1st time i have had a tattoo done without numbing cream haha
anyway i will post again soon when the hospital have rang me about being on the list.
Matt is going to keep it up to date when i get the call and then on how I'm doing after, its better this way instead of him text/facebooking all of my friends personally.
I'm a bit upset with it at the mo tho as around 15 people have left and one asked me to take her off it, i didn't want to piss anyone off with it i you tho that since there on my facebook then they would at least want to know how i am doing...maybe they shouldn't be on my facebook to start with?
I got two tattoos done last night, Connor on my right wrist and Matt on my left wrist :) I'm really happy with them and it was the 1st time i have had a tattoo done without numbing cream haha
anyway i will post again soon when the hospital have rang me about being on the list.
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