I went to sleep at 2pm on Saturday 20th August 2011 holding onto my mummy and Scott. I had spoken to my dad and my little brother. Scott went home straight away as he said he couldnt just wait around...so he went to the pictures with his friends to see the inbetweeners film haha!! My mum said it was the calmest she had been for weeks and she went back to her room at Harefield and read her book, watched the television and waited for the phonecall. My operation took 7 hours and they said they were some of the worst lungs they had seen and that there was not much of them left. I know they had to scrap the left side out as it was stuck to my chest wall - nice! Mum got a phone call just before 9pm to say it was a success and that I was being taken to recovery/ICU. I was left sedated for that night and sunday so I could give my body a rest and then was woken up on monday morning.
I remember waking up and not wanting to move, feeling bit confused and then panic set in as i realised i had had a transplant and that I was still on a ventilator with tubes everywhere. Through-out the day I was slowly weaned off the ventilator and by about 4pm that day I had the tubes taken out my throat and I was breathing on my own!! I was given a small amount of oxygen through nasal specs to help me in the early days as I was weak and not breathing deeply (I wasnt used to it and it was sore)!
I was in intensive care for 2 weeks. I was hooked up to machines and pumps and had lots of tubes everywhere. Once the ventilator was out, I was left with my PEG tube feed, a neck line so I could have drugs put through it, 4 chest drains; 2 each side, a catheter for my wee wee, an artirial line in my wrist to take blood from, and an epidural needle in my back to numb the pain. My diaphram was not moving and my voice had gone as my vocal chords were damaged during the operation. I was banned from eating and drinking for 2 days incase the contents were going into my lungs instead of my stomach. Because of these above reasons, the drs wanted to insert a tracheostomy, which is a tube that is inserted into the windpipe through the front of your neck to help aid breathing or to create access for removing build up in throat or lungs. I begged them and fought my way out of having it as I really did not want it so we compromised and I had bronchoscopys everyday.
Bronchs are when a camera is put down your nose or mouth (in my case it was my mouth) to look into your lungs and sometimes they will suction out anything that is down there. I had about 3 or 4 of these in a week and had to be awake because my lungs were still weak and recovering from transplant so it was too much for them to be sedated. I had a numbing spray in my mouth which they always say tastes of bananas when it clearly tastes more like hairspray and is vile! I was allowed to hold a registrar doctors hand and apparently nearly broke it as I couldn't handle a few parts during the Bronchs. The food was not going into my lungs and there was only a few little bits of secretions down there so I was given the go ahead to start eating and drinking little amounts. Yay!
Next up was getting back up on my feet. This was the hardest bit of transplant for me mentally and physically. The physios started getting me to sit up the day after I woke up. I had a machine which I held onto whilst sitting on the edge of the bed and it raised up and I had to pull myself up and lock my knees straight. Well that certainly didn't happen! The physios (all 3 of them) had to hold my legs, hold my chest and my drains and help hold me up. Basically I had to learn to walk again. The last 2 months I had been bedridden and unable to move hardly and I was weak for ages before that too so it had taken its tole. I cried alot when I was with physios due to frustration, being scared at moving about attached to everything and being tired!
During the 2 weeks in intensive care, I was numb. Not in the touch sense but in my feelings. I didn't know what to feel, what to do or what to think. I admit I didn't feel happy that I had a transplant straight away as I was still feeling ill but in a different way. I could breathe easier but still not great but I was unable to move very well, still weak and sore. Having these sad, negative feelings made me then feel guilty that I had been lucky enough to get a transplant and that someone else had died and given me this chance but I was not smiling, however, I was still very grateful if that all makes sense?
I left intensive care to go to E ward which is the transplant ward in the 3rd week. At this point, I had my arterial line and epidural needle out. I had finally washed my hair which automatically made me feel more human again. It was weird being transferred to the ward as I had been in the same 4 walls for over a month and it was scary coming out of that little safe secure bubble. Whilst in the room, I always had a nurse in the room 24/7 so to be moved to a ward was abut unsettling. Scott went back to work in the second week so that was also strange but I spoke to him all day and everyday. I know he hated to be away but he is self employed and he knew I was getting better and of course mummy was still by my side all the time.
Will write about the rest of recovery in the next blog to break it up abit. Plus sorry for lack of pics, they aren't bloody uploading but I will keep trying later!
X Lots of love x
Friday 16 December 2011
Wednesday 26 October 2011
Im back.....and breathing!!!!
Wow!!! Its been just over 3 months since I last blogged, and im sorry, but I have a very good reason...I had my double lung transplant!!!! It WAS NOT an easy ride as I will soon tell you but Im here and im happy. I will have to do this in a few different blogs so tonight I will do the 1st part.
Scott went on holiday to Ibiza with a few of the boys at the start of July for a week. During this week, I had no energy and slept on the sofa for most nights only just managing to get up the stairs to go to the toilet. We called the hospital and they took me to the ward and did blood gases. They needed an arterial blood gas to check my carbon dioxide levels, and this was the 1st time i was made to have one (before i had got away with having ear cutting). They numbed it with cold spray and it was sky high so i was taken straight to the high dependancy unit and connected up to loads of tubes and an NIV mask which works with your breathing. When you breathe in, it forces air into your lungs to make them expand and get rid of the carbon dioxide. I was in there for 2 weeks and spent my 23rd birthday in HDU - I got an ipad 2 though :) The blood gases came down and I was able to go home. A few pics....
I was out for a few days but started to have the same symptoms again within a few days but i managed to drag myself to the pub as my step-sis Emma had arranged a big fundraising cake-bake sale. It was brilliant - there was a auction with prizes that companies had donated, cake sale, bbq, face painting and raffle. Its only a small pub but it was packed and raised over £1000 which all went to the CF Trust. After that weekend, I was rushed in to Lewisham again as i had to call my mum home from work as i couldnt take it anymore - i couldnt even crawl up the stairs and could just about get off the sofa but wasnt eating and couldnt hardly keep my eyes open. Lance met us at the doors with a wheelchair and I was back to HDU and back on the NIV. I stayed on this for a few days, meanwhile developing severe pain attacks. I have never had them before but they are horrible - my sats were fine but when i had an attack it felt like my airways had closed and i was gasping for breath. I ended up being too scared to take my NIV off so was quickly having a drink and strapping it back on again.
I didnt know this at the time but.....the doctor took my mum into a room and told her that they couldnt get the gases down and that there was nothing more they could do for me. She was given 2 options: to put me on machines until i passed away or they could just make me comfortable. Mum was in shock as she didnt realise it was that serious because we managed to get the gases down before. She asked them if they had rang Harefield as i was on the transplant list but they said no, so she made them ring and Harefield accepted me. My mum called Danny, Scott and daddy up to the hospital to see me before i went in the ambulance. I was blue-lighted to Harefield with a ressertaion team in the back with me and mum and scott had to meet us there.
At Harefield I was attached to more bloody tubes and wires and was put on a machine called the Novalung. I was laughing when I got to Harefield because of all the stress and being so ill, i had wee'd myself in the ambulance which i found amazing - i find humour in the strangest things!! Anyway, this machine is 2 thick tubes; one in each groin, and it cleans your blood of the carbon dioxide. I dont remember having it put in but it was sore and i wasnt able to move my legs. They had to be straight and obviously i had to just lay on my back which was highly uncomfortable. I was on this for 2 weeks until I suddenly struggled more to breathe as my lungs deteriorated even more.
This is when I was put on a different machine called the Ecmo. This machine does the same as the Novalung but it also adds oxygen to the blood aswell. One of the tubes was take out my groin and put into my neck. This procedure should take under an hour but for me it took 9 hours.
Arriving at Harefield
The Novalung
The Ecmo tube in my neck
It took 9 hours because they had lots of problems. They couldnt get the tube into my neck and they were shoving it in and both men tried and were sweating and struggling. They eventually got it in and turned on the machine but it said 'no flow' so they had to cut the tubes and flush it with heprin to get rid of blood clotting in the tube....this happened 3 times. I also had to be bagged twice because my sats dropped to 30 and everything was blue. Then when they took the tube out my groin, they had to press hard on the hole to stop the blood but then realised the dressing pack had something missing. They had to get another pack and clamp and he was pushing really hard until it was sorted. So this event took all night and mum eventually left at 9am traumatised....oh forgot to mention that i was AWAKE through it all with no painkillers as it was too risky to sedate or ventilate me.
I was on the ecmo for a week and a half until I got the call for new lungs. During these 3 and half weeks at Harefield i had 2 false calls for lungs; the first were too big, the second were too damaged and the third were perfect. It was Saturday 20th August at 6am when the co-ordinator came in to say that they were going to look at some lungs. We then had to wait until 11am when they confirmed that the lungs were great and i was going to have a transplant. Mum screamed with joy and Scott was so pleased. We rang dad and he was running the pub and he told me they all cheered and clapped and we managed to get hold of my bro too. I remember feeling terrified and they put me to sleep in my room as i had too much equipment to move. Then i went to sleepy night nights xx
Part 2: After the transplant is coming in the next few days!!!
x Lots of love x
Scott went on holiday to Ibiza with a few of the boys at the start of July for a week. During this week, I had no energy and slept on the sofa for most nights only just managing to get up the stairs to go to the toilet. We called the hospital and they took me to the ward and did blood gases. They needed an arterial blood gas to check my carbon dioxide levels, and this was the 1st time i was made to have one (before i had got away with having ear cutting). They numbed it with cold spray and it was sky high so i was taken straight to the high dependancy unit and connected up to loads of tubes and an NIV mask which works with your breathing. When you breathe in, it forces air into your lungs to make them expand and get rid of the carbon dioxide. I was in there for 2 weeks and spent my 23rd birthday in HDU - I got an ipad 2 though :) The blood gases came down and I was able to go home. A few pics....
I didnt know this at the time but.....the doctor took my mum into a room and told her that they couldnt get the gases down and that there was nothing more they could do for me. She was given 2 options: to put me on machines until i passed away or they could just make me comfortable. Mum was in shock as she didnt realise it was that serious because we managed to get the gases down before. She asked them if they had rang Harefield as i was on the transplant list but they said no, so she made them ring and Harefield accepted me. My mum called Danny, Scott and daddy up to the hospital to see me before i went in the ambulance. I was blue-lighted to Harefield with a ressertaion team in the back with me and mum and scott had to meet us there.
At Harefield I was attached to more bloody tubes and wires and was put on a machine called the Novalung. I was laughing when I got to Harefield because of all the stress and being so ill, i had wee'd myself in the ambulance which i found amazing - i find humour in the strangest things!! Anyway, this machine is 2 thick tubes; one in each groin, and it cleans your blood of the carbon dioxide. I dont remember having it put in but it was sore and i wasnt able to move my legs. They had to be straight and obviously i had to just lay on my back which was highly uncomfortable. I was on this for 2 weeks until I suddenly struggled more to breathe as my lungs deteriorated even more.
This is when I was put on a different machine called the Ecmo. This machine does the same as the Novalung but it also adds oxygen to the blood aswell. One of the tubes was take out my groin and put into my neck. This procedure should take under an hour but for me it took 9 hours.
It took 9 hours because they had lots of problems. They couldnt get the tube into my neck and they were shoving it in and both men tried and were sweating and struggling. They eventually got it in and turned on the machine but it said 'no flow' so they had to cut the tubes and flush it with heprin to get rid of blood clotting in the tube....this happened 3 times. I also had to be bagged twice because my sats dropped to 30 and everything was blue. Then when they took the tube out my groin, they had to press hard on the hole to stop the blood but then realised the dressing pack had something missing. They had to get another pack and clamp and he was pushing really hard until it was sorted. So this event took all night and mum eventually left at 9am traumatised....oh forgot to mention that i was AWAKE through it all with no painkillers as it was too risky to sedate or ventilate me.
I was on the ecmo for a week and a half until I got the call for new lungs. During these 3 and half weeks at Harefield i had 2 false calls for lungs; the first were too big, the second were too damaged and the third were perfect. It was Saturday 20th August at 6am when the co-ordinator came in to say that they were going to look at some lungs. We then had to wait until 11am when they confirmed that the lungs were great and i was going to have a transplant. Mum screamed with joy and Scott was so pleased. We rang dad and he was running the pub and he told me they all cheered and clapped and we managed to get hold of my bro too. I remember feeling terrified and they put me to sleep in my room as i had too much equipment to move. Then i went to sleepy night nights xx
Part 2: After the transplant is coming in the next few days!!!
x Lots of love x
Monday 20 June 2011
What a washout....literally
Ive been pretty busy actaully since Harefield so this post may be a longish one!!
The day finally came that i had been looking forward to since xmas. I had brought my daddy tickets for me and him to go to the MotoGP to watch the motorbike racing. He loves motorbikes and i've never been, and after the start to the year that we have both had, (me going through the transplant journey and him having radiotherapy treatment) it was time for us to have fun. To sum it up, it was SHIT. It rained hard the whole day. Its making me upset just thinking about it as i felt soooo disappointed.
It was at Silverstone course which took us 2 hours to get too. We got there and everything was outdoor apart from a few shops and stalls so we went under them for shelter and I brought a t-shirt and drink. The main race started at 1pm so we walked about to find a space to stand to watch it and we actually found quite a good place. The race started and we watched it and i loved it!! The bikes were so loud and exciting!! We left after the race and had the 2 hour drive back and were home at 4pm. We were both soaked, cold and tired. It was supposed to be a lovely day event that finished at 5, that had lots of entertainment, things to see and do, look at all the bikes and different races, and the weather just completely messed it up. It was one of the worst 'weather' days this year (typical) and although its no-ones fault and there is nothing that could have been done, it still doesnt mean I cant be really angry and let down by it.
I cried in the car on the way home and most of that night to be honest. My dad was fine about it and it brings a slight smile when we think of how we both must of looked on the day, but it still hurts and i want to re-do the day all over again. Apparently there is racing in august at Brands Hatch which is much nearer to us, so i think we will try that one.
My portable oxygen is great and much easier than my concentrator as its lighter, less obvious and lasts longer. Other than my lungs being in a permanant state of crapness, im feeling fine. I think the constant oxygen is helping as I have more energy, have more colour in my face and am not always worrying about what my breathing is doing and whether I need to go on the oxygen. I just have to accept its part of my life now. Although I dont think i will make it to transplant if these bloody wires have anything to do with it. The amount of times i have wrapped the oxygen tubing around my legs or got it stuck under a door and walked and practically ripped my damn head off. Im a danger to myself!!
I had my pelvic scan on Friday. That was fun - not! Appointment was for 9am which put me in a mood straight away, as I dont do mornings. There are 2 ways to do the scan but I thought I had to have it the 1st way so I didnt say anything. I had to have an empty bladder but whilst doing the scan, it wasnt able to get clear enough results so therefore, the 2nd way would have to be done. I didnt mind until I found out you had to have a full bladder for this to be done. FOR GOD SAKE!! It then took me until 12 to drink enough water and juice in order for the scan to take place. A mixture of my overnight feed and the fact that I was sick in the night for no apparent reason added to the problems as both these things make you dehydrated, so the amount of water i was drinking wasnt going into my bladder, it was being absorbed by my body. Anyway I finally got home at 1pm and slept. The results will hopefully be through this week and then I can be put on the transplant list!!
Lets finish this post off with some good news. I won my court battle!! I was due in court on saturday at 11am. They rang at 10.15am, just as we were getting ready, to say that the judge had thrown my case out and that we had won. I didnt need to attend and that they would send written proof this week. Of course, i was happy as now i shouldnt have to worry about not getting the benefits and they will leave me alone, however, i was really angry that they have left it until last minute as i was all ready to go. Lance, my nurse, had even got on the train and was waiting for it to leave the station when we rang him and told him, he had to jump off!! So at least this week I can concentrate on other things, rather than look for a job ;) haha!!
x Lots of love x
The day finally came that i had been looking forward to since xmas. I had brought my daddy tickets for me and him to go to the MotoGP to watch the motorbike racing. He loves motorbikes and i've never been, and after the start to the year that we have both had, (me going through the transplant journey and him having radiotherapy treatment) it was time for us to have fun. To sum it up, it was SHIT. It rained hard the whole day. Its making me upset just thinking about it as i felt soooo disappointed.
It was at Silverstone course which took us 2 hours to get too. We got there and everything was outdoor apart from a few shops and stalls so we went under them for shelter and I brought a t-shirt and drink. The main race started at 1pm so we walked about to find a space to stand to watch it and we actually found quite a good place. The race started and we watched it and i loved it!! The bikes were so loud and exciting!! We left after the race and had the 2 hour drive back and were home at 4pm. We were both soaked, cold and tired. It was supposed to be a lovely day event that finished at 5, that had lots of entertainment, things to see and do, look at all the bikes and different races, and the weather just completely messed it up. It was one of the worst 'weather' days this year (typical) and although its no-ones fault and there is nothing that could have been done, it still doesnt mean I cant be really angry and let down by it.
I cried in the car on the way home and most of that night to be honest. My dad was fine about it and it brings a slight smile when we think of how we both must of looked on the day, but it still hurts and i want to re-do the day all over again. Apparently there is racing in august at Brands Hatch which is much nearer to us, so i think we will try that one.
My portable oxygen is great and much easier than my concentrator as its lighter, less obvious and lasts longer. Other than my lungs being in a permanant state of crapness, im feeling fine. I think the constant oxygen is helping as I have more energy, have more colour in my face and am not always worrying about what my breathing is doing and whether I need to go on the oxygen. I just have to accept its part of my life now. Although I dont think i will make it to transplant if these bloody wires have anything to do with it. The amount of times i have wrapped the oxygen tubing around my legs or got it stuck under a door and walked and practically ripped my damn head off. Im a danger to myself!!
I had my pelvic scan on Friday. That was fun - not! Appointment was for 9am which put me in a mood straight away, as I dont do mornings. There are 2 ways to do the scan but I thought I had to have it the 1st way so I didnt say anything. I had to have an empty bladder but whilst doing the scan, it wasnt able to get clear enough results so therefore, the 2nd way would have to be done. I didnt mind until I found out you had to have a full bladder for this to be done. FOR GOD SAKE!! It then took me until 12 to drink enough water and juice in order for the scan to take place. A mixture of my overnight feed and the fact that I was sick in the night for no apparent reason added to the problems as both these things make you dehydrated, so the amount of water i was drinking wasnt going into my bladder, it was being absorbed by my body. Anyway I finally got home at 1pm and slept. The results will hopefully be through this week and then I can be put on the transplant list!!
Lets finish this post off with some good news. I won my court battle!! I was due in court on saturday at 11am. They rang at 10.15am, just as we were getting ready, to say that the judge had thrown my case out and that we had won. I didnt need to attend and that they would send written proof this week. Of course, i was happy as now i shouldnt have to worry about not getting the benefits and they will leave me alone, however, i was really angry that they have left it until last minute as i was all ready to go. Lance, my nurse, had even got on the train and was waiting for it to leave the station when we rang him and told him, he had to jump off!! So at least this week I can concentrate on other things, rather than look for a job ;) haha!!
x Lots of love x
Saturday 18 June 2011
Harefield 2 day assesment
My appointment for my 2 day assesment for going on the transplant list was for Monday morning so we went up on the sunday night again and stayed in the onsite housing. As soon as i got to my room on the ward on Monday morning, I was given lots of forms and pots to put different things in haha!! I was wheeled down to lung function, had tests on my heart and had a heart monitor attached to me which I had to keep on for 24 hours. I had shit loads of blood taken from me, had to give a sputum sample, a urine sample and then collect all my wee wee for 24 hours.
It was then lunchtime and I got to actually have a bit of a rest for a while until it was time for physio test. I had to walk for 6 minutes between 2 cones and score how tired I was after every minute. I did really well and felt ok. At 3pm, I fell asleep and then woke up a few hours later and all tests were done for that day, so me and mum just watched tv and talked until I went to bed.
Day 2 started bright and early with a bloodtest at 9am..after 2 attempts at blood they finally got it from my hand. I had to fast from midnight for the bloods and a scan of my liver and kidneys, which i was then wheeled down for at 10am. Whilst down there, they also fitted me in for chest x-ray and a CT scan of my chest. By the time I got up to the room it was lunchtime and I hadnt eaten so I was left to eat lunch. Then it was the big talk - the in's and out's of transplant. The co-ordinator came in and discussed everything about transplants and answered all of our questions. This lasted for 4 hours!! We finally got to make our way home at 6pm and got home later that night - both absolutly shattered!!
A few days after the stay, I got a phonecall from the main Dr - Dr Carby. He said everything on my tests were fine except for one thing. Whilst doing my liver and kidney scan, a little mass was picked up in my pelvis. I need to have another scan at my hospital to check out what it is. I have been told not to worry and that they arent worried at all. They believe its just a little cyst or polyp in my pelvis and that many girls have them, but because they have found it, they have to find out for definate what it is. I did a pregnancy test for them to rule that out and that was fine - thank god!! So that scan is being booked in and until then, im on the inactive list.
It was ALOT to take in and a very busy and tiring few days. It felt like it was happening to someone else and that they were talking about someone else. I just need to talk through plans with my family and pack a transplant bag before I go on the list, so that if/when I get the call, I dont have to waste time packing a bag, i just pick it up and go!!
x Lots of love x
It was then lunchtime and I got to actually have a bit of a rest for a while until it was time for physio test. I had to walk for 6 minutes between 2 cones and score how tired I was after every minute. I did really well and felt ok. At 3pm, I fell asleep and then woke up a few hours later and all tests were done for that day, so me and mum just watched tv and talked until I went to bed.
Day 2 started bright and early with a bloodtest at 9am..after 2 attempts at blood they finally got it from my hand. I had to fast from midnight for the bloods and a scan of my liver and kidneys, which i was then wheeled down for at 10am. Whilst down there, they also fitted me in for chest x-ray and a CT scan of my chest. By the time I got up to the room it was lunchtime and I hadnt eaten so I was left to eat lunch. Then it was the big talk - the in's and out's of transplant. The co-ordinator came in and discussed everything about transplants and answered all of our questions. This lasted for 4 hours!! We finally got to make our way home at 6pm and got home later that night - both absolutly shattered!!
A few days after the stay, I got a phonecall from the main Dr - Dr Carby. He said everything on my tests were fine except for one thing. Whilst doing my liver and kidney scan, a little mass was picked up in my pelvis. I need to have another scan at my hospital to check out what it is. I have been told not to worry and that they arent worried at all. They believe its just a little cyst or polyp in my pelvis and that many girls have them, but because they have found it, they have to find out for definate what it is. I did a pregnancy test for them to rule that out and that was fine - thank god!! So that scan is being booked in and until then, im on the inactive list.
It was ALOT to take in and a very busy and tiring few days. It felt like it was happening to someone else and that they were talking about someone else. I just need to talk through plans with my family and pack a transplant bag before I go on the list, so that if/when I get the call, I dont have to waste time packing a bag, i just pick it up and go!!
x Lots of love x
Wednesday 8 June 2011
24 hour oxygen and acting posh
So I have been doing lots of little odd jobs...putting stuff up on ebay, going bank, seeing friends for lunch, posting off the stuff i sold blah blah blah. Got stuck in many different queue's in lots of these places and then realised it was half term!! I had a few days of doing not much as I was really tired. I dont know what it was down to really but I need to think about getting some salt tablets for the hot weather, as this can cause CF patients to feel extremely tired as we lose alot of salt when we sweat. Lovely!! I went shopping with mummy one night to Lakeside to make a start on birthday shopping for my brother. Again i was pushed in a wheelchair. The less said about that, the better.
The weekend was great. Friday night, me and Scott went to see X-men and we had pre-booked the tickets. When we got there, the tickets were not registering and it turned out the screen was overheated and that the screening had been cancelled. We were offered a refund (which we got) and then they took us into the earlier showing which had started 4 minutes ago. Scott moaned that he missed the trailers but that was a good thing for me!!
Saturday was a VERY tiring but brilliant day. We got all 'poshed' up and spent the day at Epsom Derby horse racing!!! I won absolutly nothing and scott won the first 2 races...that was only because he put £1 on every horse running!! Haha! I decided I was going to take my portable oxygen concentrator so I didnt have to struggle during the day as we were going on a minibus so I wouldnt have been able to leave. Mum plugged it in to charge overnight and in the morning when I went to leave, it hadnt charged.
I still went. Without oxygen. I left home at 9am and got home at 7.30pm. Call me stupid or whatever comes to mind and I would prob agree. But I am stubborn, I had been looking forward to the day for ages, I was all ready to go and found the oxygen wasnt charged at the last minute, and CF has stopped me from doing so much already that I didnt want it to stop this day out. It was a 15 minute walk from the coach to the races which was just about manageable before and after the event. Once we were sat at the races, all the betting places and food and drink stands were steps away so that was fine. Scott was, as he always is, truely amazing and I didnt have to walk anywhere at all as he did it all.
I paid for it that night and spend all of Sunday indoors (after mcdonalds breakfast of course) resting but it was worth it. I was so tired and my little lungs felt really heavy and that is why I have come to a decision. I have spoken to Lance and requested to have portable oxygen sorted out rather than the portable concentrator. The concentrator doesnt last too long, is quite heavy to pull along and more 'obvious' to everyone. For people that havent seen it, its similar to a suitcase on wheels but not as big as a whole suitcase lol. If I have portable oxygen, I have a main base at home and fill the little cylinders up from that. I can then carry them in my bag or something and they last 8 hours. Bit more discrete and manageable. Having to have oxygen on when im not indoors is horrible as I hate people seeing me with it on, however, if it means i can do more and breath better, its worth it.
x Lots of love x
The weekend was great. Friday night, me and Scott went to see X-men and we had pre-booked the tickets. When we got there, the tickets were not registering and it turned out the screen was overheated and that the screening had been cancelled. We were offered a refund (which we got) and then they took us into the earlier showing which had started 4 minutes ago. Scott moaned that he missed the trailers but that was a good thing for me!!
Saturday was a VERY tiring but brilliant day. We got all 'poshed' up and spent the day at Epsom Derby horse racing!!! I won absolutly nothing and scott won the first 2 races...that was only because he put £1 on every horse running!! Haha! I decided I was going to take my portable oxygen concentrator so I didnt have to struggle during the day as we were going on a minibus so I wouldnt have been able to leave. Mum plugged it in to charge overnight and in the morning when I went to leave, it hadnt charged.
I still went. Without oxygen. I left home at 9am and got home at 7.30pm. Call me stupid or whatever comes to mind and I would prob agree. But I am stubborn, I had been looking forward to the day for ages, I was all ready to go and found the oxygen wasnt charged at the last minute, and CF has stopped me from doing so much already that I didnt want it to stop this day out. It was a 15 minute walk from the coach to the races which was just about manageable before and after the event. Once we were sat at the races, all the betting places and food and drink stands were steps away so that was fine. Scott was, as he always is, truely amazing and I didnt have to walk anywhere at all as he did it all.
I paid for it that night and spend all of Sunday indoors (after mcdonalds breakfast of course) resting but it was worth it. I was so tired and my little lungs felt really heavy and that is why I have come to a decision. I have spoken to Lance and requested to have portable oxygen sorted out rather than the portable concentrator. The concentrator doesnt last too long, is quite heavy to pull along and more 'obvious' to everyone. For people that havent seen it, its similar to a suitcase on wheels but not as big as a whole suitcase lol. If I have portable oxygen, I have a main base at home and fill the little cylinders up from that. I can then carry them in my bag or something and they last 8 hours. Bit more discrete and manageable. Having to have oxygen on when im not indoors is horrible as I hate people seeing me with it on, however, if it means i can do more and breath better, its worth it.
x Lots of love x
Thursday 26 May 2011
5 years together
Me and my Scottings have been together now for 5 years. We celebrated by going to Scotts favourite place (the cinema) and then my favourite place (a restaurant) haha!! We didnt do pressies but just got each other cards. When I got to scotts house he had stuck balloons all up the stairs which had 5 on them. Awwwwww lol xx Im sure you all know by now - through this blog and through facebook - how much I love him. He looks after me, understands me, makes me laugh so much and we hardly ever argue. We have no need to, and thats the honest truth. He is not only my boyfriend but my best friend and I tell him everything and know he will be there with me always. xx
As of today, I am needle free!! Finally after 3 weeks of iv's I dont have to worry about the bloody tube hanging from my chest and can have a proper shower. BEST. FEELING. EVER. My chest is fine but I still use my oxygen more than I would like. Unfortunatly, I think its going to be the norm now and its going to be with me until my new shiny pretty lungs come along. My appetite is back and my weight has gone up since i started iv's. Im starting a trial for a different overnight feed which has 2 calories per ml instead of 1.5 calories that im now on. That means i will be able to fit in an extra 500 calories overnight, going from 1500 - 2000 calories. Will start that tonight....lets hope it agrees with me!
Ive been quite busy actually since the weekend. I introduced Scott to the wonder shop that is Ikea. I love that shop and love flatpack furniture even more. I think that should be my job lol. He got a wardrobe and chest of drawers for his room. I got pushed round perched on the edge of the trolley which was great. We worked great as a team: i sat on the sofa with the tools, screws and instructions and basically told Scott what to do!! Thats good teamwork ;)
I had lots of places to go to on Tuesday; doctors, gym (to cancel the membership as im just not well enough to go), chemist... scott had finished early so he came with me as he needed to sort stuff out too. Yesterday I got my hair done finally too!! Feels sooooo much better - have gone shorter and blonder.
Im going to finish the blog with the best news this week though....my friend Chantelle got her transplant call on Monday and it went ahead. She only waited 8 weeks which is brilliant. Its only been a few days but all her chest drains are out and shes been helped into a chair! Thats such good progress already and i really hope she continues to do well. I was so excited and really nervous all day monday and constantly checking for updates. I dont know why it affected me so much. Obviously because she is my friend but i think alot of it was because of my own situation.
I knew Chantelle before she needed a transplant and we worked together to get our weight up. Her lung function dropped quite quickly and she decided to start transplant proceedings around xmas. So from starting the meetings at her hospital at xmas to now is less than half a year and she already has new lungs...its all was so quick and just reminded me that it could be me going on the list in june and then it could be anytime!!
x Lots of love x
As of today, I am needle free!! Finally after 3 weeks of iv's I dont have to worry about the bloody tube hanging from my chest and can have a proper shower. BEST. FEELING. EVER. My chest is fine but I still use my oxygen more than I would like. Unfortunatly, I think its going to be the norm now and its going to be with me until my new shiny pretty lungs come along. My appetite is back and my weight has gone up since i started iv's. Im starting a trial for a different overnight feed which has 2 calories per ml instead of 1.5 calories that im now on. That means i will be able to fit in an extra 500 calories overnight, going from 1500 - 2000 calories. Will start that tonight....lets hope it agrees with me!
Ive been quite busy actually since the weekend. I introduced Scott to the wonder shop that is Ikea. I love that shop and love flatpack furniture even more. I think that should be my job lol. He got a wardrobe and chest of drawers for his room. I got pushed round perched on the edge of the trolley which was great. We worked great as a team: i sat on the sofa with the tools, screws and instructions and basically told Scott what to do!! Thats good teamwork ;)
I had lots of places to go to on Tuesday; doctors, gym (to cancel the membership as im just not well enough to go), chemist... scott had finished early so he came with me as he needed to sort stuff out too. Yesterday I got my hair done finally too!! Feels sooooo much better - have gone shorter and blonder.
Im going to finish the blog with the best news this week though....my friend Chantelle got her transplant call on Monday and it went ahead. She only waited 8 weeks which is brilliant. Its only been a few days but all her chest drains are out and shes been helped into a chair! Thats such good progress already and i really hope she continues to do well. I was so excited and really nervous all day monday and constantly checking for updates. I dont know why it affected me so much. Obviously because she is my friend but i think alot of it was because of my own situation.
I knew Chantelle before she needed a transplant and we worked together to get our weight up. Her lung function dropped quite quickly and she decided to start transplant proceedings around xmas. So from starting the meetings at her hospital at xmas to now is less than half a year and she already has new lungs...its all was so quick and just reminded me that it could be me going on the list in june and then it could be anytime!!
x Lots of love x
Thursday 19 May 2011
Chelsea charity match
I will start with the health side of things. Im feeling alright at the moment. Im still on iv's as i agreed to have a 3rd week just to get my chest as clear as possible. My appetite is back and im not coughing lots so this extra week will hopefully keep me going for a little while. Im still abit breathless so am on and off the oxygen but am able to be off it for most of the day now. I had my needle changed yesterday, which stung like a bastard due to the numbing cream not working and being rubbed with an alcohol wipe over the hole the last needle came out of. Ouchie!!!
Last week was Scotty's birthday and we went for a nice meal and cinema with our friends Sirin and Carlton. Just before his bday, me and mum had a few hours to pick up a few little bits for him to open. Because I still wasnt great and because we only had a couple of hours to get around Bluewater, my mum suggested i go in a wheelchair. I have only ever been in a wheelchair when in hospital, and am so stubborn, I would rather push myself to the absolute limit than give in. However, I needed to go and knew I wouldnt make it round so I agreed and we borrowed a wheelchair from a family friend. It broke my heart to have to be pushed round in it, im only 22 for god sake, but it did make the trip so much easier.
I got alot of stares and i can understand why. Other than being abit pale and skinny, i dont look ill and you wouldnt know, i didnt have oxygen on, i was moving about and my legs were moving (so they knew i could walk), and im young, so people must just wonder why im in a wheelchair. I wish it was just because i was mucking around and being lazy!! We did laugh alot though. Mum bashed the chair on many aisles and got me caught on various things, and then didnt know what to do with me when she went to pay for things so often dumped me somewhere in the shop haha!! I was impressed with the card i got Scott:
Tuesday finally came and it was an early start having to leave the house at 7am. For those who dont know, CF patients dont do early mornings!! We have sooo much to do before leaving the house and we also need our sleep lol. It was the CF Trust charity football match at Chelsea football club. The team was made up of people that have a link with CF and celebrities who support the charity, and we would be playing against the members of parliament team. There were 6 of us that went; me, danny, mum, dad, dad's partner Lisa and my friend Steph. It took us 2 hours to get to Stamford bridge in rush hour traffic but we made it. The match was very funny and everyone got to play 40 minutes in total on the pitch. My little bro scored a hatrick!!! The match ended 6-4 to us - wahoo!!
After the match we went to the presentation. There were a few speeches and then everyone went up to receive their little trophys. We were sitting at our table talking about the trophy and pictures when danny got called back up and given another trophy as he was voted 'man of the match'. We then went to the chelsea store and got the new chelsea shirt and made our way home. It was a long day but it couldnt have gone any better. The amount raised is still being counted and brought in but it was estimated to be about £30,000 which is great for such a small event. I was so proud of danny and i know everyone else was too.
I will upload the pics once ive collected them all as 3 different cameras were used, but here is a few...
Oh...I just remembered....I got my court date. Its on the 18th June. Lets fight!!
x Lots of love x
Last week was Scotty's birthday and we went for a nice meal and cinema with our friends Sirin and Carlton. Just before his bday, me and mum had a few hours to pick up a few little bits for him to open. Because I still wasnt great and because we only had a couple of hours to get around Bluewater, my mum suggested i go in a wheelchair. I have only ever been in a wheelchair when in hospital, and am so stubborn, I would rather push myself to the absolute limit than give in. However, I needed to go and knew I wouldnt make it round so I agreed and we borrowed a wheelchair from a family friend. It broke my heart to have to be pushed round in it, im only 22 for god sake, but it did make the trip so much easier.
I got alot of stares and i can understand why. Other than being abit pale and skinny, i dont look ill and you wouldnt know, i didnt have oxygen on, i was moving about and my legs were moving (so they knew i could walk), and im young, so people must just wonder why im in a wheelchair. I wish it was just because i was mucking around and being lazy!! We did laugh alot though. Mum bashed the chair on many aisles and got me caught on various things, and then didnt know what to do with me when she went to pay for things so often dumped me somewhere in the shop haha!! I was impressed with the card i got Scott:
Tuesday finally came and it was an early start having to leave the house at 7am. For those who dont know, CF patients dont do early mornings!! We have sooo much to do before leaving the house and we also need our sleep lol. It was the CF Trust charity football match at Chelsea football club. The team was made up of people that have a link with CF and celebrities who support the charity, and we would be playing against the members of parliament team. There were 6 of us that went; me, danny, mum, dad, dad's partner Lisa and my friend Steph. It took us 2 hours to get to Stamford bridge in rush hour traffic but we made it. The match was very funny and everyone got to play 40 minutes in total on the pitch. My little bro scored a hatrick!!! The match ended 6-4 to us - wahoo!!
After the match we went to the presentation. There were a few speeches and then everyone went up to receive their little trophys. We were sitting at our table talking about the trophy and pictures when danny got called back up and given another trophy as he was voted 'man of the match'. We then went to the chelsea store and got the new chelsea shirt and made our way home. It was a long day but it couldnt have gone any better. The amount raised is still being counted and brought in but it was estimated to be about £30,000 which is great for such a small event. I was so proud of danny and i know everyone else was too.
I will upload the pics once ive collected them all as 3 different cameras were used, but here is a few...
Oh...I just remembered....I got my court date. Its on the 18th June. Lets fight!!
x Lots of love x
Tuesday 10 May 2011
Documentary on BBC3
I havent done much at all since starting these ivs which is a good and bad thing really. Good because i should be resting and taking it easy so my body can recover and not keep knackering myself out, but bad because my head wants to do lots of things and i also keep getting a dead bum!!
I have been using my portable oxygen when driving and when i went up Scotts and the pub. It doesnt bother me wearing it infront of people, although its not the greatest fashion accessory, but i often worry about how the people around me feel about me wearing it. My dad tries to kind of keep me in one area of the pub for example. Its not that he is embarassed, I just think that he is trying to protect me but i find myself getting snappy at him, but again, thats because of my own feelings. I worry how scott and my family feel having to see me with it on. We all know my lungs are a big piece of crap but its just a physical reminder at how bad they really are. I start to wonder how long it will be until I am on oxygen alot more or even 24/7. Hopefully I can get over this infection and keep the oxygen just for overnight use again. My mind always goes into overdrive when im not well.
I got an email on thursday from a producer from a company that does documentaries for the big channels like ITV, BBC and channel 4. They came across my blog and want to get me involved in a documentary on young people and transplants. It will be shown on BBC3 at 9pm in October. At first i wasnt sure whether to do it or not because I am scared i will say the wrong thing and come across in the wrong way and plus, I sound like a child on cameras!!! Lots of people have supported me and urged me to go for it so I got in touch and they are coming round for a chat on friday afternoon....argh!!! Im looking forward to this weekend as its scottings birthday so I hope it goes well.
x Lots of love x
I have been using my portable oxygen when driving and when i went up Scotts and the pub. It doesnt bother me wearing it infront of people, although its not the greatest fashion accessory, but i often worry about how the people around me feel about me wearing it. My dad tries to kind of keep me in one area of the pub for example. Its not that he is embarassed, I just think that he is trying to protect me but i find myself getting snappy at him, but again, thats because of my own feelings. I worry how scott and my family feel having to see me with it on. We all know my lungs are a big piece of crap but its just a physical reminder at how bad they really are. I start to wonder how long it will be until I am on oxygen alot more or even 24/7. Hopefully I can get over this infection and keep the oxygen just for overnight use again. My mind always goes into overdrive when im not well.
I got an email on thursday from a producer from a company that does documentaries for the big channels like ITV, BBC and channel 4. They came across my blog and want to get me involved in a documentary on young people and transplants. It will be shown on BBC3 at 9pm in October. At first i wasnt sure whether to do it or not because I am scared i will say the wrong thing and come across in the wrong way and plus, I sound like a child on cameras!!! Lots of people have supported me and urged me to go for it so I got in touch and they are coming round for a chat on friday afternoon....argh!!! Im looking forward to this weekend as its scottings birthday so I hope it goes well.
x Lots of love x
Wednesday 4 May 2011
Oxygen - check!
Bugger it...my chest had a big old flip out and im now on iv's, possible daytime feeds and oxygen. It got worse and worse over the long bank holiday weekend so i warned Lance that they would be needed so when i went to clinic on tuesday, i was put straight on them. Didnt do lung function as my sats were dropped to in the 70's (whoops!!), my weight dropped a kg so i need to keep an eye on that and i wasnt allowed home until i was given a portable oxygen concentrator as its obviously dangerous driving and being out and about with that low sats. Oh well, I feel shitty but once these ivs kick in then i will be on the up again!
Earlier on tuesday, i had the dentist. Harefield wanted me to see the dentist before my 3 day assesment (which is exactly a month away - argh!!) in order to have healthy teeth. To have a transplant they want you to have good teeth as these are a big infection risk. I have never had a filling before and have only had my teeth whitened at the front when i was in secondary school. This was because the shock my body had at being born with an illness, my enamal didnt form as well and plus all the antibiotics didnt help. Thankfully my teeth just needed a little clean up and that was it, yay!! The only part of my body that is healthy i think lol!!
Despite feeling highly crap over the weekend i had some nice highlights actually. Friday was the royal wedding and i watched most of it and loved it. I burst into tears at a few moments and was, of course, David Beckham hunting - soooo handsome!! ;) Im allowed to say how much i love beckham because Scott loves him too! Friday night, me and Scott went nandos and cinema to see Thor. It was a brilliant film and because we had lots of time in nandos and before the film, we got to talk alot and i really enjoyed it, a proper date night. Another little highlight for me was at the pub on saturday. I got up there for the football at 5pm and my daddy was up there!! I havent spoke about him much in my blog as its not my place to share all his business, but he hasnt been well and so shut himself away....he has finished treatment and is slowly improving and so to see him back in the pub and making the effort to come out was great.
This week is relaxing and concentrating on getting abit better so that I have a bit more to say that i have done in my next blog lol.
x Lots of love x
Earlier on tuesday, i had the dentist. Harefield wanted me to see the dentist before my 3 day assesment (which is exactly a month away - argh!!) in order to have healthy teeth. To have a transplant they want you to have good teeth as these are a big infection risk. I have never had a filling before and have only had my teeth whitened at the front when i was in secondary school. This was because the shock my body had at being born with an illness, my enamal didnt form as well and plus all the antibiotics didnt help. Thankfully my teeth just needed a little clean up and that was it, yay!! The only part of my body that is healthy i think lol!!
Despite feeling highly crap over the weekend i had some nice highlights actually. Friday was the royal wedding and i watched most of it and loved it. I burst into tears at a few moments and was, of course, David Beckham hunting - soooo handsome!! ;) Im allowed to say how much i love beckham because Scott loves him too! Friday night, me and Scott went nandos and cinema to see Thor. It was a brilliant film and because we had lots of time in nandos and before the film, we got to talk alot and i really enjoyed it, a proper date night. Another little highlight for me was at the pub on saturday. I got up there for the football at 5pm and my daddy was up there!! I havent spoke about him much in my blog as its not my place to share all his business, but he hasnt been well and so shut himself away....he has finished treatment and is slowly improving and so to see him back in the pub and making the effort to come out was great.
This week is relaxing and concentrating on getting abit better so that I have a bit more to say that i have done in my next blog lol.
x Lots of love x
Monday 25 April 2011
Shopping, Sun and Easter
No matter how ill I feel or how bad life seems, it always seems that little bit more bareable when the sun is out. Not that im feeling overly ill, its just a fact!
Ive been enjoying the sun and been on little trips out to the pub and to the shops just to enjoy the weather. I had a great shopping trip with mummy on friday to Lakeside. I am stopping myself buying clothes as i dont really need any, i just need to iron the clothes i do have lol. However, i did need some thin cardigans just to cover my arms if it gets chilly so i got 2. When we went past Republic, there were people standing outside giving out 25% off vouchers so i had a little look and ended up with 2 pairs of shorts haha!! It was a bargin though - 2 pairs for £12 and then 25% off so i got them for £9 - couldnt turn it down could i? :) I also brought some stud, heart, sparkley earrings and 2 books to read. We picked up a present for Scott for his birthday (which is in a few weeks) too. Very happy!! I was pleased that i made it all the way round lakeside on both levels but was knackered after.
Saturday I went to a few shops with Scott and had a nice day out in the sun and I finished off in the pub watching the chelsea match. Sunday was abit more of a rest day just reading the paper and eating my easter eggs...easter egg chocolate is the best and always seems to taste nicer! Me, mum, Danny and Scott went for a meal at the carvery which made a change and was actually really nice to do something together.
My chest is not too bad and likes this weather anyway, apart from of a night, if i dont have a fan on, i cough alot more due to the stuffiness. Im still on the voriconazole tablets which finish this saturday i think. I have clinic tomorrow and just hope for my numbers to be stable as i dont think there will be dramatic increases. I am going to ask for salt tablets though as i do suffer in this weather. CF patients lose alot of salt when they sweat and we taste like a chip!! This salt loss can lead to really low energy levels which happens to me so i have been upping the salt on my food and having salt and vinegar crisps to tide me over until clinic.
x Lots of love x
Ive been enjoying the sun and been on little trips out to the pub and to the shops just to enjoy the weather. I had a great shopping trip with mummy on friday to Lakeside. I am stopping myself buying clothes as i dont really need any, i just need to iron the clothes i do have lol. However, i did need some thin cardigans just to cover my arms if it gets chilly so i got 2. When we went past Republic, there were people standing outside giving out 25% off vouchers so i had a little look and ended up with 2 pairs of shorts haha!! It was a bargin though - 2 pairs for £12 and then 25% off so i got them for £9 - couldnt turn it down could i? :) I also brought some stud, heart, sparkley earrings and 2 books to read. We picked up a present for Scott for his birthday (which is in a few weeks) too. Very happy!! I was pleased that i made it all the way round lakeside on both levels but was knackered after.
Saturday I went to a few shops with Scott and had a nice day out in the sun and I finished off in the pub watching the chelsea match. Sunday was abit more of a rest day just reading the paper and eating my easter eggs...easter egg chocolate is the best and always seems to taste nicer! Me, mum, Danny and Scott went for a meal at the carvery which made a change and was actually really nice to do something together.
My chest is not too bad and likes this weather anyway, apart from of a night, if i dont have a fan on, i cough alot more due to the stuffiness. Im still on the voriconazole tablets which finish this saturday i think. I have clinic tomorrow and just hope for my numbers to be stable as i dont think there will be dramatic increases. I am going to ask for salt tablets though as i do suffer in this weather. CF patients lose alot of salt when they sweat and we taste like a chip!! This salt loss can lead to really low energy levels which happens to me so i have been upping the salt on my food and having salt and vinegar crisps to tide me over until clinic.
x Lots of love x
Monday 18 April 2011
My little bro is fundraising
My little bro Danny has managed to get a place on the Cystic Fibrosis football team for a charity match at Chelsea FC stadium: Stamford Bridge!! They will be playing against football legends and celebrities apparently, on 17th May. We are all looking forward to it and think it will be a great day out. This is his 1st time fundraising so I ask if you could donate anything, no matter how small, to show your support, we would be really thankful!!
www.justgiving.com/stamfordbridge
Since my last blog, ive been busy and feeling quite well actually. I had clinic tuesday, which was crap, so i wont go into details. Lung function and weight was down abit, but no-one else was too worried so maybe i was too hard on myself as i wasnt feeling great. The bloody fire alarm went off halfway through and it wasnt a drill, which was quite funny actually and many people escaped out the side doors of clinic!! lol.
Since thursday, my chest has been clearer and ive had more energy so im doing well. Ive been shopping alittle and then went to visit my friend, who had a baby girl last week called Paris. She is gorgeous and soooo tiny and now she is on maternity leave, i can keep her company on days where we are bored!! :) I have also been forced to watch the Scream films as we went to see the new one on Saturday with our other couple friends. I spent most of the film with fingers in ears and squinting at the screen...i dont deal well with scary/creepy films...i have an overactive imagination!!
I found 2 great things this week:
I have got virgin media boxes and you can look at 'music on demand' so look at all types of music videos, and then i saw a karaoke section!! I was in scotts room whilst he was in the bath and got all excited so shouted and told him, and because he was in the bath, i looked on the disney songs (of course) and gave him a rendition of 'Under the Sea' from the little mermaid. I managed the whole song without coughing, so impressed myself...scott was not impressed at the song choice especially when he got out the bath halfway through and caught me singing into the remote! It was just habit!
The second is prob only appreicated by CF people. I have found great bras!! Let me explain....I hate wearing bras because it feels like someone has put an elastic band round my chest and the first thing i do when i walk in the door is take it off and relax. I have tried getting bigger sizes but because i like the underwired with cups in, no matter what, they still dig in. I also have to wear strapless bras as my port sticks out in my chest and its right over were the strap should be and it rubs and hurts. I found the solution in peacocks!! 2 for £6 the have cups built into them so give a nice shape but the top and bottom are elasticated bands. They are like a tiny boob tube top basically and sooooo comfy. I was so happy. May sound silly to some people but its little things like this, that make my life so much easier.
x Lots of love x
www.justgiving.com/stamfordbridge
Since my last blog, ive been busy and feeling quite well actually. I had clinic tuesday, which was crap, so i wont go into details. Lung function and weight was down abit, but no-one else was too worried so maybe i was too hard on myself as i wasnt feeling great. The bloody fire alarm went off halfway through and it wasnt a drill, which was quite funny actually and many people escaped out the side doors of clinic!! lol.
Since thursday, my chest has been clearer and ive had more energy so im doing well. Ive been shopping alittle and then went to visit my friend, who had a baby girl last week called Paris. She is gorgeous and soooo tiny and now she is on maternity leave, i can keep her company on days where we are bored!! :) I have also been forced to watch the Scream films as we went to see the new one on Saturday with our other couple friends. I spent most of the film with fingers in ears and squinting at the screen...i dont deal well with scary/creepy films...i have an overactive imagination!!
I found 2 great things this week:
I have got virgin media boxes and you can look at 'music on demand' so look at all types of music videos, and then i saw a karaoke section!! I was in scotts room whilst he was in the bath and got all excited so shouted and told him, and because he was in the bath, i looked on the disney songs (of course) and gave him a rendition of 'Under the Sea' from the little mermaid. I managed the whole song without coughing, so impressed myself...scott was not impressed at the song choice especially when he got out the bath halfway through and caught me singing into the remote! It was just habit!
The second is prob only appreicated by CF people. I have found great bras!! Let me explain....I hate wearing bras because it feels like someone has put an elastic band round my chest and the first thing i do when i walk in the door is take it off and relax. I have tried getting bigger sizes but because i like the underwired with cups in, no matter what, they still dig in. I also have to wear strapless bras as my port sticks out in my chest and its right over were the strap should be and it rubs and hurts. I found the solution in peacocks!! 2 for £6 the have cups built into them so give a nice shape but the top and bottom are elasticated bands. They are like a tiny boob tube top basically and sooooo comfy. I was so happy. May sound silly to some people but its little things like this, that make my life so much easier.
x Lots of love x
Sunday 10 April 2011
Relief???
Ok...i dont know if thats the right word. I seem to be saying that phrase alot lately and its only because im feeling so many different emotions so i dont really know how to describe it or how to put my feelings across.
This week ive mainly been really happy and feeling better, apart from one part which i will get out of the way now....me and Scott have cancelled our holiday to Rome :( My mum had mentioned it to me before but i was determined to go but then Scott mentioned it on tuesday night so we spoke about it. I looked at my mum and she swore that she hadnt spoken to scott as it seemed very suspicious!! We basically agreed that i would have to put off going on the list in order to go, that oxygen may need to be taken, and that he thinks we would have such a good time after transplant and that i could even run up the spanish steps lol. Its things like this that make me love Scott that little bit more then i thought i could. It was abit of relief as i wouldnt have to worry about the oxygen or if i was going to be well but i was so upset and disappointed that CF, had yet again, got in the way.
In good news....the weather is lovely!! My chest loves this weather and has felt better bit by bit. Although i am on those new tablets so it maybe something to do with them too!! I have been able to see better and ive had more energy so a good week. Im feeling happy too! No particular reason, I just feel alright! My dad also finished his radiotherapy treatment on friday too so that is great.
To keep in with the happy mood, i will leave you with a picture of some of my dinner on Wednesday....made me giggle....im so childish!!
x Lots of love x
This week ive mainly been really happy and feeling better, apart from one part which i will get out of the way now....me and Scott have cancelled our holiday to Rome :( My mum had mentioned it to me before but i was determined to go but then Scott mentioned it on tuesday night so we spoke about it. I looked at my mum and she swore that she hadnt spoken to scott as it seemed very suspicious!! We basically agreed that i would have to put off going on the list in order to go, that oxygen may need to be taken, and that he thinks we would have such a good time after transplant and that i could even run up the spanish steps lol. Its things like this that make me love Scott that little bit more then i thought i could. It was abit of relief as i wouldnt have to worry about the oxygen or if i was going to be well but i was so upset and disappointed that CF, had yet again, got in the way.
In good news....the weather is lovely!! My chest loves this weather and has felt better bit by bit. Although i am on those new tablets so it maybe something to do with them too!! I have been able to see better and ive had more energy so a good week. Im feeling happy too! No particular reason, I just feel alright! My dad also finished his radiotherapy treatment on friday too so that is great.
To keep in with the happy mood, i will leave you with a picture of some of my dinner on Wednesday....made me giggle....im so childish!!
x Lots of love x
Tuesday 5 April 2011
I cant see
Im writing this with blurry vision and seeing black splodges on the page so if spelling is not great or i make no sense at all, then that is why!!
Dont worry im not going blind, ive started those tablets i mentioned in my last post to treat a possible fungal infection in my naughty lungies. I started them friday and have been lightheaded and spaced out ever since :) For you CF people...yes it is Voriconazole.
I didnt do too much last week i dont think. Our front room got finished and looks prettiful and then I had 2 horrible days at home and Scotts. Lets just say without too much detail, that its girly week and was really heavy so I started to get abit worried. I just had to stay indoors really. Lovely!!
Saturday was a nice night though. Because of the above reason, i hardly slept friday night, so i slept in the day and caught up on some programmes and saved my energy for the evening. 7 of us went to the cinema and then out for dinner afterwards which was funny and a nice evening actually, although the boys can get quite loud!! :)
I got a phonecall from Harefield today too. All my test results that we had to wait 10 days for were back. All of them were fine and my antibodies (which needed to be low in order to go onto the next stage of transplant) were negative, so i have none!! Yay!! I was pleased everything else was ok and I am booked in for a 3 day assessment at Harefield on 6th June. I know my mum was very relieved as she worries more than she lets on!! She had a big block of 4 days off from the 6th anyway....it must be fate lol.
My head is going crazy to be honest. I am still living my life day to day but im now really thinking and analysing everything, even little things. It seems like everything i do at the moment, i look back and be honest with myself and think 'could i do this a year ago?' and if the answer is no, then i get upset but then thats replaced by a thought of 'well, after my transplant, i will be able to do that and more', so im then excited...is that the right word?? Hmmmm....im rambling now and its hard to explain, but im up and down in my head, full of questions which i will ask people, but more looking at myself. Maybe this is why I cant bloody sleep lol!!!
x Lots of love x
Dont worry im not going blind, ive started those tablets i mentioned in my last post to treat a possible fungal infection in my naughty lungies. I started them friday and have been lightheaded and spaced out ever since :) For you CF people...yes it is Voriconazole.
I didnt do too much last week i dont think. Our front room got finished and looks prettiful and then I had 2 horrible days at home and Scotts. Lets just say without too much detail, that its girly week and was really heavy so I started to get abit worried. I just had to stay indoors really. Lovely!!
Saturday was a nice night though. Because of the above reason, i hardly slept friday night, so i slept in the day and caught up on some programmes and saved my energy for the evening. 7 of us went to the cinema and then out for dinner afterwards which was funny and a nice evening actually, although the boys can get quite loud!! :)
I got a phonecall from Harefield today too. All my test results that we had to wait 10 days for were back. All of them were fine and my antibodies (which needed to be low in order to go onto the next stage of transplant) were negative, so i have none!! Yay!! I was pleased everything else was ok and I am booked in for a 3 day assessment at Harefield on 6th June. I know my mum was very relieved as she worries more than she lets on!! She had a big block of 4 days off from the 6th anyway....it must be fate lol.
My head is going crazy to be honest. I am still living my life day to day but im now really thinking and analysing everything, even little things. It seems like everything i do at the moment, i look back and be honest with myself and think 'could i do this a year ago?' and if the answer is no, then i get upset but then thats replaced by a thought of 'well, after my transplant, i will be able to do that and more', so im then excited...is that the right word?? Hmmmm....im rambling now and its hard to explain, but im up and down in my head, full of questions which i will ask people, but more looking at myself. Maybe this is why I cant bloody sleep lol!!!
x Lots of love x
Sunday 27 March 2011
Harefield - the 1st meeting
I havent hardly been home or sat down for too long in one place since my last blog on monday and im knackered so this weekend, i have done very little other than watching tv, reading the paper and eating!! Anyway, on to the important matter of my trip to Harefield hospital.
We got there early tuesday evening and got in the room and watched tv and took in the surrondings. We then drove out to a beefeater which i found on a iphone app (yay for iphone) and i stuffed my face with a big burger and then a brownie!! My poor mummy who never gets ill was really bad and didnt eat, was up all night coughing and was very tired. She felt really guilty for being ill during this time but i just joked that they might offer her a transplant and think we was there for her!! :)
I didnt sleep anyway. Mum was coughing, i didnt have many pillows, i was hot which makes me cough and i was nervous. We was up early as the appointment was 9.30am. I threw up all my juice outside the entrance which was a good start. We met the transplant co-ordinator who explained what would happen that day, gave us abit of information and then i signed a consent form to allow them to test certain things. The morning was spent doing different tests, all of which i have had before: lung function, weight, blood pressure and sats, urine and sputum sample, chest xray, heart ultrasound and ECG, and bloods. What a performance in the blood testing place!! I had a line in already because im on ivs so i asked them to take it from my port. They could do it but everyones port is different so i told her about mine. The blood came out fine like it usually does but she had to take loads for all the tests (think there was about 12-15 bottles). After the first 30mls she changed syringes and then got my mum to keep moving the syringe about to keep the blood moving so it didnt clot. Then another woman came in and started putting the blood in bottles whilst the woman was still taking the rest from me...in the end, I had 3 people in the room doing different jobs....i like to cause a scene and at least people knew i was there lol!!
After the test we got to have a break and some lunch. In the afternoon was a talk with the doctor. The 'main' man, Dr Carby, was away ill (just my damn luck lol) but the man we saw was lovely and spoke to Dr Carby over the phone anyway. We saw him for a hour and left at 3pm. He didnt say much about transplant, just the main info about getting on the list and what happens when, or if, you get the call. He wanted to know more about me, my health history and how CF affected me. He looked over some of the results of the tests they did that morning and said all of my other organs were fine except my lungs. I know that they are scarred and damaged, thats obvious, but its still not nice to see it in the xray or CT scan. There is an area in my top left lung that is bad and they are giving me a course of tablets incase there is a CF bug hiding in the area called Aspergillus. After that, he said that looking at the info given, and bearing in mind the test results that come back in 10 days are ok, then they are willing to look at moving me onto the next stage of transplant. This will mean me being admitted to a ward in Harefield for 3-4 days for more indepth tests and talks.
I left feeling ok about the day and we eventually got home at 5pm and i feel straight asleep until half 6. So now we wait until the results come in and try not to think about things too much until they do. I do want to go ahead with transplant as my life isnt the best quality now, but i need to take things at a certain pace in order to get my head around things. If things move too quick, thats when i panic and start to back out.
In other news, it was another busy day thursday and friday. Thursday was my best mate Stephs birthday so I went shopping for her pressies, cake and balloons which I then dropped off at Frankie and Bennys. She had never been there before so me and her family surprised her with a meal there and it was a great night. Friday I finished my ivs so went and had my needle out and spoke to Lance and Jen about Harefield and the tablets are being sorted to start next week.
x Lots of love x
We got there early tuesday evening and got in the room and watched tv and took in the surrondings. We then drove out to a beefeater which i found on a iphone app (yay for iphone) and i stuffed my face with a big burger and then a brownie!! My poor mummy who never gets ill was really bad and didnt eat, was up all night coughing and was very tired. She felt really guilty for being ill during this time but i just joked that they might offer her a transplant and think we was there for her!! :)
I didnt sleep anyway. Mum was coughing, i didnt have many pillows, i was hot which makes me cough and i was nervous. We was up early as the appointment was 9.30am. I threw up all my juice outside the entrance which was a good start. We met the transplant co-ordinator who explained what would happen that day, gave us abit of information and then i signed a consent form to allow them to test certain things. The morning was spent doing different tests, all of which i have had before: lung function, weight, blood pressure and sats, urine and sputum sample, chest xray, heart ultrasound and ECG, and bloods. What a performance in the blood testing place!! I had a line in already because im on ivs so i asked them to take it from my port. They could do it but everyones port is different so i told her about mine. The blood came out fine like it usually does but she had to take loads for all the tests (think there was about 12-15 bottles). After the first 30mls she changed syringes and then got my mum to keep moving the syringe about to keep the blood moving so it didnt clot. Then another woman came in and started putting the blood in bottles whilst the woman was still taking the rest from me...in the end, I had 3 people in the room doing different jobs....i like to cause a scene and at least people knew i was there lol!!
After the test we got to have a break and some lunch. In the afternoon was a talk with the doctor. The 'main' man, Dr Carby, was away ill (just my damn luck lol) but the man we saw was lovely and spoke to Dr Carby over the phone anyway. We saw him for a hour and left at 3pm. He didnt say much about transplant, just the main info about getting on the list and what happens when, or if, you get the call. He wanted to know more about me, my health history and how CF affected me. He looked over some of the results of the tests they did that morning and said all of my other organs were fine except my lungs. I know that they are scarred and damaged, thats obvious, but its still not nice to see it in the xray or CT scan. There is an area in my top left lung that is bad and they are giving me a course of tablets incase there is a CF bug hiding in the area called Aspergillus. After that, he said that looking at the info given, and bearing in mind the test results that come back in 10 days are ok, then they are willing to look at moving me onto the next stage of transplant. This will mean me being admitted to a ward in Harefield for 3-4 days for more indepth tests and talks.
I left feeling ok about the day and we eventually got home at 5pm and i feel straight asleep until half 6. So now we wait until the results come in and try not to think about things too much until they do. I do want to go ahead with transplant as my life isnt the best quality now, but i need to take things at a certain pace in order to get my head around things. If things move too quick, thats when i panic and start to back out.
In other news, it was another busy day thursday and friday. Thursday was my best mate Stephs birthday so I went shopping for her pressies, cake and balloons which I then dropped off at Frankie and Bennys. She had never been there before so me and her family surprised her with a meal there and it was a great night. Friday I finished my ivs so went and had my needle out and spoke to Lance and Jen about Harefield and the tablets are being sorted to start next week.
x Lots of love x
Monday 21 March 2011
Everyone is snotty!!!
Im surronded by coughing people and im attempting to avoid them as much as possible but when one is your best friend, one is your mummy and the other is your boyfriend, it is pretty hard! I finally got to see Steph on friday as she had got over the worst and then went out for a meal with Scott, Sirin and Carlton which was lovely. We saw one of the boys from 'Twist and Pulse', that dancing duo that was on Britains Got Talent (no i dunno what one it was either lol). I begged Scott to go up and start dancing next to him but he didnt as he wasnt well and then the boy left. Haha!!
Alot of the week we had the builder in who was sorting out the fireplace and putting the tv on the wall so i was banned fro downstairs because of the dust and stuff. I was confined to my bedroom and felt like Cinderella with y mumy running drinks and stuff upstairs to me - quite nice actually lol...but i was pleased to finaly get downstairs and relax on Thursday.
Poor Scott has been sufering all weekend with a cough, bunged up chest and lack of energy. He even had the day off today, which he never does so i know he isnt well. I have seen him but not hardly gone near him, which is horrible as i want to be there for him when he isnt well, like he is for me all the time, but i still have to be careful which he understands.
Over the weekend we had a trip to the supermarket to get some dvds and I wanted to do an 'irish' themed box for my daddy. He had tickets to go to Ireland to watch the rugby match this weekend. However, he is having radiotherapy so wouldnt have been back in time for todays session and he is suffering with tiredness alot so would have been too much hassle at the moment. I know what its like to have to cancel things due to illness, although i am a stubborn moo and often push myself and still go anyway, so i felt sorry for him. I dragged Scott round looking for things to put in my box and got lots of strange looks round Morrisons due to the questions i was asking i think hee hee. I did really well actually.
I turned up dressed in stuff left over from St Patricks day, which was timed well lol. He loved it and had ran out of tea and marmalade so that was even better!! :)
Me and mum are off to Harefield tomorrow. The appointment isnt until Wednesday but because its early and far away, we didnt want to turn up stressed or in a rush so are staying overnight in the flats at Harefield. Ive been talking alot with different people so was feeling better about things, but im starting to get nervous and the sicky feeling. Will let you know how it goes.
x Lots of love x
Alot of the week we had the builder in who was sorting out the fireplace and putting the tv on the wall so i was banned fro downstairs because of the dust and stuff. I was confined to my bedroom and felt like Cinderella with y mumy running drinks and stuff upstairs to me - quite nice actually lol...but i was pleased to finaly get downstairs and relax on Thursday.
Poor Scott has been sufering all weekend with a cough, bunged up chest and lack of energy. He even had the day off today, which he never does so i know he isnt well. I have seen him but not hardly gone near him, which is horrible as i want to be there for him when he isnt well, like he is for me all the time, but i still have to be careful which he understands.
Over the weekend we had a trip to the supermarket to get some dvds and I wanted to do an 'irish' themed box for my daddy. He had tickets to go to Ireland to watch the rugby match this weekend. However, he is having radiotherapy so wouldnt have been back in time for todays session and he is suffering with tiredness alot so would have been too much hassle at the moment. I know what its like to have to cancel things due to illness, although i am a stubborn moo and often push myself and still go anyway, so i felt sorry for him. I dragged Scott round looking for things to put in my box and got lots of strange looks round Morrisons due to the questions i was asking i think hee hee. I did really well actually.
I turned up dressed in stuff left over from St Patricks day, which was timed well lol. He loved it and had ran out of tea and marmalade so that was even better!! :)
Me and mum are off to Harefield tomorrow. The appointment isnt until Wednesday but because its early and far away, we didnt want to turn up stressed or in a rush so are staying overnight in the flats at Harefield. Ive been talking alot with different people so was feeling better about things, but im starting to get nervous and the sicky feeling. Will let you know how it goes.
x Lots of love x
Monday 14 March 2011
Transplant talks
Yes the time has come where transplant has been mentioned and appointment came through the post on friday for me to go to Harefield hospital for a day appointment to talk to and meet them. Harefield is a specialist heart and lung hospital so i couldnt be in a better place. Its on the 23rd March so not long now.
Friday I also started my iv's so it was a hard day as i was shocked at how soon the appointment was, paired with my chest being shit anyway and then i was tired as i had been coughing during the night, so not good timing. Over the weekend, I spoke to family and close people about the news and everyone took it really well and saw it in a completely positive way which changed my view slightly and has taken a BIG weight off my mind. For those that dont know much about the whole thing, I will need a double lung transplant.
I dont want to say too much about things yet as im still trying to get my head around things and dont really know what to say about the situation yet. I just have to write down questions that i want answered and take them with me. I do know a fair bit about transplant as a few of my friends have had them so i have heard bits about it. I honestly dont know how they have done so well and coped, im already abit of a wreck just thinking about it so i admire them and hope, if or when, my time comes, i can do as well as i see them doing. Truely amazing people xx
Me and mum will be going to the appointment and we will be going up the evening before and staying overnight so we dont have to leave ridiculously early in the morning and stress about getting there, as it will be a stressful enough day im sure.
My ivs are going well for the first few days ive been on them. Im abit itchy and red and have only been sick once so im doing well, just the tiredness mainly. We are decorating and sorting out the front room and kitchen this week, so i will be helping mummy with that and have lots of forms to help Scott fill in.
x Lots of love x
Friday I also started my iv's so it was a hard day as i was shocked at how soon the appointment was, paired with my chest being shit anyway and then i was tired as i had been coughing during the night, so not good timing. Over the weekend, I spoke to family and close people about the news and everyone took it really well and saw it in a completely positive way which changed my view slightly and has taken a BIG weight off my mind. For those that dont know much about the whole thing, I will need a double lung transplant.
I dont want to say too much about things yet as im still trying to get my head around things and dont really know what to say about the situation yet. I just have to write down questions that i want answered and take them with me. I do know a fair bit about transplant as a few of my friends have had them so i have heard bits about it. I honestly dont know how they have done so well and coped, im already abit of a wreck just thinking about it so i admire them and hope, if or when, my time comes, i can do as well as i see them doing. Truely amazing people xx
Me and mum will be going to the appointment and we will be going up the evening before and staying overnight so we dont have to leave ridiculously early in the morning and stress about getting there, as it will be a stressful enough day im sure.
My ivs are going well for the first few days ive been on them. Im abit itchy and red and have only been sick once so im doing well, just the tiredness mainly. We are decorating and sorting out the front room and kitchen this week, so i will be helping mummy with that and have lots of forms to help Scott fill in.
x Lots of love x
Wednesday 9 March 2011
Only 4 weeks
Arghhhhh!!! Only 4 weeks roughly since leaving hospital and im starting iv's again on friday. Big fat bumholes!! I believe that its still the same infection i had in hospital and because it was such a big one last time, it didnt completely clear. I was still coughing alittle when i left hospital but i thought that it wasnt too bad...looks like i was wrong. I am normally quiet at night time and only wake up to turn my feed off and on the odd occassion i need a trip to the loo. However, i havent slept hardly in 3 nights in a row and even kept scott up last night (and he sleeps through anything and has become used to my coughing). Im still eating and stll managing to do things but its the coughing all the time and its starting to take longer for me to do things so i gave in and Lance has fitted me in.
Other than the general, mild shitty lungs, i had terrible bellyache over the weekend so had a relaxing, chill out weekend anyway. In my sleepy, 4am state, i think i forgot to take my tablets after my feed had finished and therefore, massive amounts of wind happened all of saturday and followed by pain and constant trips to the loo on sunday....i will leave the description there...i have some dignity :)
I have had a good time since my last post though. My hair is done and a pretty, renewed blonde highlighted colour and that always makes a girly feel better (although it needs attention now...bit of a wash and a brush is called for!) and Monday night, a group of us went to see the psyhic Sally Morgan show again. She was great as usual and i did have a little scare and my friend looked at me as if she thought the message would be for me!! My heart did start pumping hard but then the names didnt match up. Basically she started the description by holding her belly and saying about pain and then said her lungs were hurting and filled....obviously, i thought 'CF' and so did my friends around me, but it turned out to be an old lady who passed away after an illness.
Last night me and Scott attempted pancakes. The first one went horribly wrong and scott flipped it and it fell apart...haha, we are sooo useless!! The rest were nice though and drenched in lemon and sugar...i still have ingredients so may repeat it today with my little bro as he didnt have any yesterday. Mmmm im hungry now!!
x Lots of love x
Other than the general, mild shitty lungs, i had terrible bellyache over the weekend so had a relaxing, chill out weekend anyway. In my sleepy, 4am state, i think i forgot to take my tablets after my feed had finished and therefore, massive amounts of wind happened all of saturday and followed by pain and constant trips to the loo on sunday....i will leave the description there...i have some dignity :)
I have had a good time since my last post though. My hair is done and a pretty, renewed blonde highlighted colour and that always makes a girly feel better (although it needs attention now...bit of a wash and a brush is called for!) and Monday night, a group of us went to see the psyhic Sally Morgan show again. She was great as usual and i did have a little scare and my friend looked at me as if she thought the message would be for me!! My heart did start pumping hard but then the names didnt match up. Basically she started the description by holding her belly and saying about pain and then said her lungs were hurting and filled....obviously, i thought 'CF' and so did my friends around me, but it turned out to be an old lady who passed away after an illness.
Last night me and Scott attempted pancakes. The first one went horribly wrong and scott flipped it and it fell apart...haha, we are sooo useless!! The rest were nice though and drenched in lemon and sugar...i still have ingredients so may repeat it today with my little bro as he didnt have any yesterday. Mmmm im hungry now!!
x Lots of love x
Thursday 3 March 2011
Owner of an iphone
Yay!! I finally managed, after walking to a million different phone shops with Scott, to get an iphone and sort out my shitty blackberry contract. It took me days to figure out the damn thing but now i think i have the hang of it!! Of course i brought a pretty sparkley cover for it and sent everyone my new number.
I had clinic tuesday which went well. I didnt see my usual doctor, it was a junior type one. Normally i try and hold my toungue and just be nice to them but i had no clue what this man was going on about. The only sentence i did pick up on was him asking me "so...what are you doing?" What the hell is that supposed to mean? What am i doing now? What am i doing in general? What am i doing exercise-wise? So that was a quick meeting. My lung function is stable but i can improve it and hope to now im back on track, and my weight has gone up from 45.9 to 46.6kg!! Yay!! All in all a good clinic and i was the quickest ever and was out within half an hour.
Im also back at the gym. I had a meeting with the healthwise people there who check up on you and how your plan is going roughly every 6 weeks. I didnt change anything as, since last time i saw him i have been ill, then in hosp for 2 and half weeks, then getting back to 'normal' life and back to square one with my exercise tolerance as the chest infection knocked it backwards. Really bloody annoys me but i did suprisingly well. I spent 10 mins on the treadmill and got faster and faster (no running though!!) and then did lots of weights and stuff and felt really good. Im gonna go again soon :)
Im looking forward to getting my hair done tomorrow as its suddenly gone really dark and tangley so i cant be arsed to do much with it. Good job im well enough to have it done as it takes about 3 hours and them chairs aint comfy! Whilst writing this, ive been invited for an indian meal with daddy tonight so wont pass up that opportunity.
Oh - a few of my friends have shown me a piece of writing that describes really well what life is like living with an illness that you cant really see. Have a read if you can as it may help you understand alittle more what is normally very hard to explain.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
x Lots of love x
I had clinic tuesday which went well. I didnt see my usual doctor, it was a junior type one. Normally i try and hold my toungue and just be nice to them but i had no clue what this man was going on about. The only sentence i did pick up on was him asking me "so...what are you doing?" What the hell is that supposed to mean? What am i doing now? What am i doing in general? What am i doing exercise-wise? So that was a quick meeting. My lung function is stable but i can improve it and hope to now im back on track, and my weight has gone up from 45.9 to 46.6kg!! Yay!! All in all a good clinic and i was the quickest ever and was out within half an hour.
Im also back at the gym. I had a meeting with the healthwise people there who check up on you and how your plan is going roughly every 6 weeks. I didnt change anything as, since last time i saw him i have been ill, then in hosp for 2 and half weeks, then getting back to 'normal' life and back to square one with my exercise tolerance as the chest infection knocked it backwards. Really bloody annoys me but i did suprisingly well. I spent 10 mins on the treadmill and got faster and faster (no running though!!) and then did lots of weights and stuff and felt really good. Im gonna go again soon :)
Im looking forward to getting my hair done tomorrow as its suddenly gone really dark and tangley so i cant be arsed to do much with it. Good job im well enough to have it done as it takes about 3 hours and them chairs aint comfy! Whilst writing this, ive been invited for an indian meal with daddy tonight so wont pass up that opportunity.
Oh - a few of my friends have shown me a piece of writing that describes really well what life is like living with an illness that you cant really see. Have a read if you can as it may help you understand alittle more what is normally very hard to explain.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
x Lots of love x
Thursday 24 February 2011
Busy week
Its nice to say its been a busy week...yes, i do get tired but having stuff written in my diary feels good and that im not such a bum after all. Mum has also had days off so thats nice too.
Friday night was lovely. I stayed at Scotts for the first time since coming out of hospital. We watched 'The Social Network', played with the doggies, ate snacks and just had a lovely night together. Scott brought me a bunch of pink roses and a little I Love You balloon which was so lovely. :)
Over the weekend, Scotts nan and grandad had come down from Lowestoft so we went to see them and his auntie Susan and cousin Mollie. I also spent a nice evening at dads having a big bowl of spag bol and watched Uncle Buck -great film!
Monday was a catch up day with Steph and we went shopping. I needed basic t-shirts as i have no idea where my t-shirts are...or my socks for that matter...hmmmm, someone is stealing my clothes. It must be a child, they are the only people that are gonna fit in them lol. I also picked up some white plimsols and a stripy navy and white top. I look like im a sailor so now for a boat. I think i need to book a cruise or one of them rent-a-barge holidays!! I also picked daddy up some jumpers and joggers for when he goes hospital for his radiotherapy as i know i cant stand wearing jeans in hospital, i like to be comfy!! That night me, mum and her friend Dawn went to visit a family friend who had had a baby a few weeks ago. A baby boy called Herbie (great name!!). He is lovely but i was also there to visit their doggy Hudson. He is a Boston Terrier and i love him. He came to visit me at the hospital over a year ago now so it was great to see him again. My babysitting and dogsitting services have been offered.
Tuesday my chest hurt for no apparent reason and it bubbled like made. It still is abit now but once physio is done its not too bad. That evening, me and Scott and his mum and dad went for dinner round their friends house. I meet my friend Carly through them and i havent seen her in ages so it was a good to see her. Hope to see her even more now she is having a baby soon. Roll on April so we can meet the little one! Another baby visit was called for on Wednesday as well, one of my friends babies is 6 months old and i havent seen her so me and mum went round for the afternoon. Finally a baby girl to visit and she was very cute.
God - millions of babies are turning up!! I will take one if there is any spares ;)
I got my laptop back finally and next for my damn phone to be fixed. Off to Bluewater with Scott tomorrow to sort it out before it ends up hitting a wall at high speed.
x Lots of love x
Friday night was lovely. I stayed at Scotts for the first time since coming out of hospital. We watched 'The Social Network', played with the doggies, ate snacks and just had a lovely night together. Scott brought me a bunch of pink roses and a little I Love You balloon which was so lovely. :)
Over the weekend, Scotts nan and grandad had come down from Lowestoft so we went to see them and his auntie Susan and cousin Mollie. I also spent a nice evening at dads having a big bowl of spag bol and watched Uncle Buck -great film!
Monday was a catch up day with Steph and we went shopping. I needed basic t-shirts as i have no idea where my t-shirts are...or my socks for that matter...hmmmm, someone is stealing my clothes. It must be a child, they are the only people that are gonna fit in them lol. I also picked up some white plimsols and a stripy navy and white top. I look like im a sailor so now for a boat. I think i need to book a cruise or one of them rent-a-barge holidays!! I also picked daddy up some jumpers and joggers for when he goes hospital for his radiotherapy as i know i cant stand wearing jeans in hospital, i like to be comfy!! That night me, mum and her friend Dawn went to visit a family friend who had had a baby a few weeks ago. A baby boy called Herbie (great name!!). He is lovely but i was also there to visit their doggy Hudson. He is a Boston Terrier and i love him. He came to visit me at the hospital over a year ago now so it was great to see him again. My babysitting and dogsitting services have been offered.
Tuesday my chest hurt for no apparent reason and it bubbled like made. It still is abit now but once physio is done its not too bad. That evening, me and Scott and his mum and dad went for dinner round their friends house. I meet my friend Carly through them and i havent seen her in ages so it was a good to see her. Hope to see her even more now she is having a baby soon. Roll on April so we can meet the little one! Another baby visit was called for on Wednesday as well, one of my friends babies is 6 months old and i havent seen her so me and mum went round for the afternoon. Finally a baby girl to visit and she was very cute.
God - millions of babies are turning up!! I will take one if there is any spares ;)
I got my laptop back finally and next for my damn phone to be fixed. Off to Bluewater with Scott tomorrow to sort it out before it ends up hitting a wall at high speed.
x Lots of love x
Saturday 19 February 2011
All cleared out!
First...it means my chest is clear!! I havent been around as i have been in hospital. Boooooo :( I went to clinic tuesday and they didnt let me leave the hospital. I went straight on iv's and oxygen and mum left the hospital with a big list of stuff to go home and pack! The stuff on my chest was just so thick that it was hard to get up and was also blocking my airways so hence the oxygen was needed.
Ended up staying in for just over 2 weeks. I havent been in hospital since last may so i have done really well and even in may it wasnt because of my chest, it was all the problems with the peg. All the staff said i bounced back much quicker this time than when ive been in before so i am pleased that my work over the last few months has paid off and shown that i am stronger. Just need to push even harder and keep things up. I have got oxygen at home now as my sats were playing up when i was in. Its just for occassional use and if i need it, which i dont feel like i do so im trying not to worry but it really upset me when they first ordered it as it just means more medical stuff and reminders of CF. The main thing im looking at is that i feel well so thats good.
Whilst i was in my cousin Frankie had her baby boy. She had a very hard labour and we visited them all once they were home as they only live near my hosptial. He is absolutly gorgeous! So welcome to the world baby Henry and congrats Frankie and Paul...u will be great parents.
Thursday I went to Ushers concert at the o2 which was brilliant!! I forgot how many great songs he has had. I danced all the way through and was shattered at the end of the night but it was worth it. I had only been out of hospital a day so i had not moved that much in weeks haha!! My mum and bro enjoyed it too. Brill night.
Now for the weekend....oh and will people stop telling me to slow down!! I have been in the same room for 2 weeks and in a bed so now im back, im making the most of it...the more i do in a day, the better i feel anyway!!
x Lots of love x
Ended up staying in for just over 2 weeks. I havent been in hospital since last may so i have done really well and even in may it wasnt because of my chest, it was all the problems with the peg. All the staff said i bounced back much quicker this time than when ive been in before so i am pleased that my work over the last few months has paid off and shown that i am stronger. Just need to push even harder and keep things up. I have got oxygen at home now as my sats were playing up when i was in. Its just for occassional use and if i need it, which i dont feel like i do so im trying not to worry but it really upset me when they first ordered it as it just means more medical stuff and reminders of CF. The main thing im looking at is that i feel well so thats good.
Whilst i was in my cousin Frankie had her baby boy. She had a very hard labour and we visited them all once they were home as they only live near my hosptial. He is absolutly gorgeous! So welcome to the world baby Henry and congrats Frankie and Paul...u will be great parents.
Thursday I went to Ushers concert at the o2 which was brilliant!! I forgot how many great songs he has had. I danced all the way through and was shattered at the end of the night but it was worth it. I had only been out of hospital a day so i had not moved that much in weeks haha!! My mum and bro enjoyed it too. Brill night.
Now for the weekend....oh and will people stop telling me to slow down!! I have been in the same room for 2 weeks and in a bed so now im back, im making the most of it...the more i do in a day, the better i feel anyway!!
x Lots of love x
Friday 28 January 2011
Up....then down
This week started off well and then went downhill from then but im still not too shabby - just yet!!
Monday I had a big burst of energy which lasted all day. I did all my usual morning bits and then got to the doctors in time before they shut. From there, I went to the gym with my lovely new pink headphones on and did really well. I did about 45 minutes on all the machines altogether which i was pleased with as i had a cough too! I then got home, sorted out all my medicine cupboards and cooked dinner. On tuesday, the energy stayed with me, so I went for a big shop and lunch with my best mate Steph. We had such a good time and ended up being out for longer than expected!!
The last few days Ive been really tired and my chest is very productive and thick. Eww. I thought it maybe because I did alot lately but my chest has been up and down for weeks now and I think its starting to hit. I am trying out an antibiotic that i havent had before but others have said it works for them, and seeing as im resistant to the others, i may as well try it. Ive got to pick it up later on today from the hosp and will pop into the gym on my way back for a little while. Ive got clinic on tuesday for a check up to see if the orals are working and ive been told to bring some phlegm....what a glamourous life I lead ;)
Just a short-ish blog as im on my bros laptop as mine is being fixed and im getting annoyed as typing is sooo hard and some buttons get stuck so now my fingers hurt.
x Lots of love x
Monday I had a big burst of energy which lasted all day. I did all my usual morning bits and then got to the doctors in time before they shut. From there, I went to the gym with my lovely new pink headphones on and did really well. I did about 45 minutes on all the machines altogether which i was pleased with as i had a cough too! I then got home, sorted out all my medicine cupboards and cooked dinner. On tuesday, the energy stayed with me, so I went for a big shop and lunch with my best mate Steph. We had such a good time and ended up being out for longer than expected!!
The last few days Ive been really tired and my chest is very productive and thick. Eww. I thought it maybe because I did alot lately but my chest has been up and down for weeks now and I think its starting to hit. I am trying out an antibiotic that i havent had before but others have said it works for them, and seeing as im resistant to the others, i may as well try it. Ive got to pick it up later on today from the hosp and will pop into the gym on my way back for a little while. Ive got clinic on tuesday for a check up to see if the orals are working and ive been told to bring some phlegm....what a glamourous life I lead ;)
Just a short-ish blog as im on my bros laptop as mine is being fixed and im getting annoyed as typing is sooo hard and some buttons get stuck so now my fingers hurt.
x Lots of love x
Thursday 20 January 2011
The venflon is back :(
God i forgot how bloody annoying and sore venflons are!!
I had 2 scans booked: 1 on friday and 1 on monday. I had to have a line put in for each scan in order to put a dye into my blood stream. I couldnt have it in my port as they have to push the dye in fast and the pressure of pushing it in at that speed may snap the port line, so i definatly didnt want to risk that! I also asked if i could have the scans on the same day but i couldnt because they both use dye, it would be too much dye for my kidneys to handle. Bugger.
Lance met us friday morning and we found one good vein and he got the line in. He said i could keep it in all weekend so that we didnt have to worry about finding a vein on monday, and i agreed that this was prob the best option for me! I just had to flush the line once a day with heprin (which keeps the line clear and helps it not block).
For the lung scan I had to inhale radioactive gas for 3 minutes through something similar to a nebuliser, then had to lie down and have xray type pictures taken for about 10 minutes. The lady then injected dye into my line and then the same xray pictures were taken again. I didnt like the woman who did it...she was very rough and spoke to me like a child.
The scan on monday was a CT scan of my lungs. I got there and had to wait over an hour before being seen as they were behind and there was an emergency case whilst i was there. They took a few pictures first then the machine pushed the dye in and it was such a weird feeling. I went all hot and it felt like my head was soaked in sweat and i instantly felt like i was about to wet myself and it was really hot. The feeling went after a minute and then I was finished. I didnt like the scanner it went round me and made a loud noise!! I had my line taken out along with a few swear words thrown in as usual!!
The weekend was good. Friday night, me, mum and scott all sat in mine to watch 24. Saturday, me and scott went to the cinema with another couple, Sirin and Carlton, to see The Green Hornet which was quite good actually. After we were starving so we went to the harvester where we met another couple, Danny and Debbie, and we all ate alot and had a great time.
Starting to get abit more of a cough again so will have to try and get rid of it again. I also realised the other night that i had been nebbing my dnase and it ran out of date in december!! Oppps....i have put in an order for more supplies so have no dnase for a few days. I have other nebs to loosen stuff but i like my dnase!!
x Lots of love x
I had 2 scans booked: 1 on friday and 1 on monday. I had to have a line put in for each scan in order to put a dye into my blood stream. I couldnt have it in my port as they have to push the dye in fast and the pressure of pushing it in at that speed may snap the port line, so i definatly didnt want to risk that! I also asked if i could have the scans on the same day but i couldnt because they both use dye, it would be too much dye for my kidneys to handle. Bugger.
Lance met us friday morning and we found one good vein and he got the line in. He said i could keep it in all weekend so that we didnt have to worry about finding a vein on monday, and i agreed that this was prob the best option for me! I just had to flush the line once a day with heprin (which keeps the line clear and helps it not block).
For the lung scan I had to inhale radioactive gas for 3 minutes through something similar to a nebuliser, then had to lie down and have xray type pictures taken for about 10 minutes. The lady then injected dye into my line and then the same xray pictures were taken again. I didnt like the woman who did it...she was very rough and spoke to me like a child.
The scan on monday was a CT scan of my lungs. I got there and had to wait over an hour before being seen as they were behind and there was an emergency case whilst i was there. They took a few pictures first then the machine pushed the dye in and it was such a weird feeling. I went all hot and it felt like my head was soaked in sweat and i instantly felt like i was about to wet myself and it was really hot. The feeling went after a minute and then I was finished. I didnt like the scanner it went round me and made a loud noise!! I had my line taken out along with a few swear words thrown in as usual!!
The weekend was good. Friday night, me, mum and scott all sat in mine to watch 24. Saturday, me and scott went to the cinema with another couple, Sirin and Carlton, to see The Green Hornet which was quite good actually. After we were starving so we went to the harvester where we met another couple, Danny and Debbie, and we all ate alot and had a great time.
Starting to get abit more of a cough again so will have to try and get rid of it again. I also realised the other night that i had been nebbing my dnase and it ran out of date in december!! Oppps....i have put in an order for more supplies so have no dnase for a few days. I have other nebs to loosen stuff but i like my dnase!!
x Lots of love x
Wednesday 12 January 2011
Back to the gym with a clear chest :)
My chest is clear!! I did it! Woohoo!!
I used a few extra nebulisers, stuck to my dnase neb and did my physio little and often. My chest feels better and is no longer crackly and sore. I still have a tickly cough due to my nose still being abit watery but that should go with time. Really pleased i managed to sort it out without having to have iv's or steriods or anything. Since the weekend, I got my appetite and energy back so its all good.
Im swamped with bloody appointments which im not happy about. I finally had the massive, sharps bin picked up from when i finished iv's before xmas as they werent in my area until that date. I had clinic yesterday which ive already spoken about, also got a lung scan on friday and then a CT scan of my chest on Monday. Great. I will really look forward to them - not!
Now for the good news...I started my Healthwise thing today and it went well. Healthwise is a health programme for 3 years that you go on if you need to exercise for certain health reasons. It is direct debit of £11.95 a month which is great value and I can use the gym, swimming pool and attend any classes whenever i want. The man was really nice and helpful and asked all questions about my health, medication, abilities and my goals and then took me into the gym to sort out a programme. The programme varies alot taking into account how differently CF affects me day-to-day, for example, the treadmill speed was set and he said to do it between 7-10 mins and we will aim for 15. Some days i will be able to do more than others so he set time frames. I wasnt given lots of cardio stuff yet as im still trying to gain weight and dont want to burn it off, however, I need to do some to strengthen my little lungies. I was shown some weight exercises to help strentghen my arms, legs and help with my posture. Im seeing him again in February so we can look how im doing and make changes to the programme. I cant wait to start now!!! Im off to sort out my music on the ipod which helps me last longer in the gym and helps with the motivation :)
All in all a good blog post I think!!
x Lots of love x
I used a few extra nebulisers, stuck to my dnase neb and did my physio little and often. My chest feels better and is no longer crackly and sore. I still have a tickly cough due to my nose still being abit watery but that should go with time. Really pleased i managed to sort it out without having to have iv's or steriods or anything. Since the weekend, I got my appetite and energy back so its all good.
Im swamped with bloody appointments which im not happy about. I finally had the massive, sharps bin picked up from when i finished iv's before xmas as they werent in my area until that date. I had clinic yesterday which ive already spoken about, also got a lung scan on friday and then a CT scan of my chest on Monday. Great. I will really look forward to them - not!
Now for the good news...I started my Healthwise thing today and it went well. Healthwise is a health programme for 3 years that you go on if you need to exercise for certain health reasons. It is direct debit of £11.95 a month which is great value and I can use the gym, swimming pool and attend any classes whenever i want. The man was really nice and helpful and asked all questions about my health, medication, abilities and my goals and then took me into the gym to sort out a programme. The programme varies alot taking into account how differently CF affects me day-to-day, for example, the treadmill speed was set and he said to do it between 7-10 mins and we will aim for 15. Some days i will be able to do more than others so he set time frames. I wasnt given lots of cardio stuff yet as im still trying to gain weight and dont want to burn it off, however, I need to do some to strengthen my little lungies. I was shown some weight exercises to help strentghen my arms, legs and help with my posture. Im seeing him again in February so we can look how im doing and make changes to the programme. I cant wait to start now!!! Im off to sort out my music on the ipod which helps me last longer in the gym and helps with the motivation :)
All in all a good blog post I think!!
x Lots of love x
Thursday 6 January 2011
Snot, snot and dancing :)
Since the day before New Years eve, I have been unwell. It suddenly hit me and I was very tired, not hungry, hot and sweaty and chesty. I also threw up my feed - which tastes vile!! After speaking to the doctors yesterday, he said it sounded viral. I started to feel better bit by bit but it stayed on my chest. I went hospital on tuesday to try and get something to help. My doctor is great and spoke through options. We are going to focus on more nebs to loosen things and do little bits of exercise to help shift it. I didnt want iv's again already as its only been 2 weeks. I lost abit of weight from 47 to 46.6kg but i expected that due to having a virus and throwing up - any 'normal' person would lose weight too!!
After kicking the plan into action yesterday, I feel abit better today. Not coughing as much and breathing better. Am going to continue to do what i did yesterday and hopefully things keep improving. I have developed a very snotty nose. Yesterday, thats all i did was bloody blow it. This morning has been the same. I want to know where all this damn snot is coming from!! Im only little and so is my nose, so how does it all fit!! Its at times like this my nickname from Scott fits. He has many nicknames for me - most of them horrid lol - but he calls me Tissue Lady. When i have a snotty nose, the tissues multiply. He loves me really :)
I brought Steph tickets for Flashdance at the theatre for xmas and it was last night at Shaftesbury Avenue in London. We parked straight away and found a Zizzi's restuarant opposite the theatre so we ate in there. I havent seen the film and neither has Steph so we werent sure of the story. All i knew was that it was about dancing and I had seen the clip of the song 'What a Feeling'. The reviews were great and we both like the theatre anyway so i booked them. It was brilliant and there were many times we were dancing and laughing along. I would urge people to go. On the way back to the car, we kept singing and dancing and kept jumping about (well as much as i can jump!!) which was so funny. God knows what people thought of us. Mind you, London is full of nutters so we fit right in :D
Its really cheered my up going out. At first, I really had to push to make the effort to go but it was worth it. Feeling better today apart from i need a shower, but i have to put the heating on first as its too cold!!!
x Lots of love x
After kicking the plan into action yesterday, I feel abit better today. Not coughing as much and breathing better. Am going to continue to do what i did yesterday and hopefully things keep improving. I have developed a very snotty nose. Yesterday, thats all i did was bloody blow it. This morning has been the same. I want to know where all this damn snot is coming from!! Im only little and so is my nose, so how does it all fit!! Its at times like this my nickname from Scott fits. He has many nicknames for me - most of them horrid lol - but he calls me Tissue Lady. When i have a snotty nose, the tissues multiply. He loves me really :)
I brought Steph tickets for Flashdance at the theatre for xmas and it was last night at Shaftesbury Avenue in London. We parked straight away and found a Zizzi's restuarant opposite the theatre so we ate in there. I havent seen the film and neither has Steph so we werent sure of the story. All i knew was that it was about dancing and I had seen the clip of the song 'What a Feeling'. The reviews were great and we both like the theatre anyway so i booked them. It was brilliant and there were many times we were dancing and laughing along. I would urge people to go. On the way back to the car, we kept singing and dancing and kept jumping about (well as much as i can jump!!) which was so funny. God knows what people thought of us. Mind you, London is full of nutters so we fit right in :D
Its really cheered my up going out. At first, I really had to push to make the effort to go but it was worth it. Feeling better today apart from i need a shower, but i have to put the heating on first as its too cold!!!
x Lots of love x
Sunday 2 January 2011
My 2010 in full view
Happy New Year everyone!! Welcome to 2011. What a year to say the least. Every year has up's and down's along the way so here are mine:
January: Went to see Avenue Q at the theatre with Scott and Legally Blonde with Steph, both were brilliant, and i finally plucked up the courage to have a PEG fitted.
February: Me and Scott made our own valentines day cards and I got my PEG fitted (yes - i do class this as a good thing) :) However, it was a month full of pain to be honest. I had plurisy and I had a bad chest infection which meant an admission to hospital.
March: Still in hosp after PEG operation due to trapped air which was squashing my lungs. Dyed my hair brunette for the 1st time ever and went on a cheap holiday to Dymchurch with Scott in a caravan which was great!!
April: Shit hit the fan basically!! My stomach decided to grow over the inside of my PEG tube. Operation to change it happened, went wrong and I woke in intensive care on a ventilator. My stomach had been cut open as the PEG got 'lost' and a new tube put in place. Horredous month :(
May: Scott's 21st birthday which consisted of a meal and a great night out at the o2, and our 4 year anniversary. However, i also spent most of May being sick, feeling sick. Eventually rushed to hospital, sedated and had a camera down where they pulled the PEG tube out of my bowel as it had made its way into there. Meanwhile, I lost all my weight and went back under 40kg.
June: Rushed to hospital by ambulance due to an allergic reaction to iv antibiotics and couldnt breathe. Good month as I went on a Chelsea football club stadium tour with Steph, my little bro's 18th birthday, had my PEG tube changed to a button, and went to Malaga in a villa with my friends.
July: Went back to the gym for the 1st time in years, had a 7 hour shopping trip with mummy for my 22nd birthday and my weight started to go back up!!
August: Day out with Steph at Madame Tussuads, day at Legoland with Scott, went to London for a photoshoot for 'Love It' magazine. Horrible news that my friend James who had CF suddenly passed away and I had a fight at the Jobcentre!! xx
September: 1st attempt at Yoga class with mummy, lung function and weight the highest its been since last year, article in 'Love It' magazine was published. Bloody feeding pump which beeped all damn night and ended up in the porch wrapped in a towel!!
October: Hospital m.o.t, getting drunk for daddys birthday, another great night out at a party, got a new smaller feeding pump, weekend in Rainham, and changing my PEG button which was terrifying but easy.
November: Holiday to York for a week with Scott and the doggies which was brilliant, and referred to Healthwise scheme for exercise. But was summond to court by ESA benefits as apparently i am well enough to work. Wankers.
December: Snow, lots of shopping for pressies, back to blonde hair, JLS concert, great xmas eve and xmas day!!
I have thought about my new years resolution: of course, it goes without saying that it will be to put the weight on and get my lung function up. However my target is....to be able to run. This may sound silly to some people but to me it would be great, even if its only for about a minute. I also want to continue to make the most of things and 'do more'. 2010, although the obvious bad things that happened, i can say that i had a good year and did lots!! I hope that continues and Ive already started a list on this blog on the tab 'My Year 2011', which has things im looking forward too. Positivity is very important to me, as without this, it's very hard to get through things.
I just want to say thank you to all the special people that have really helped me through this year: I have had many messages from friends and every single one means alot and makes me smile, however, i cant mention you all...so here are a few: my family of course who are amazing, scott and his family, my best friend Steph, my mates Ria, Joey, and Sirin, my family friend Michelle, and of course my brilliant CF team Lance and Jen. xxx
x Lots of love x
January: Went to see Avenue Q at the theatre with Scott and Legally Blonde with Steph, both were brilliant, and i finally plucked up the courage to have a PEG fitted.
February: Me and Scott made our own valentines day cards and I got my PEG fitted (yes - i do class this as a good thing) :) However, it was a month full of pain to be honest. I had plurisy and I had a bad chest infection which meant an admission to hospital.
March: Still in hosp after PEG operation due to trapped air which was squashing my lungs. Dyed my hair brunette for the 1st time ever and went on a cheap holiday to Dymchurch with Scott in a caravan which was great!!
April: Shit hit the fan basically!! My stomach decided to grow over the inside of my PEG tube. Operation to change it happened, went wrong and I woke in intensive care on a ventilator. My stomach had been cut open as the PEG got 'lost' and a new tube put in place. Horredous month :(
May: Scott's 21st birthday which consisted of a meal and a great night out at the o2, and our 4 year anniversary. However, i also spent most of May being sick, feeling sick. Eventually rushed to hospital, sedated and had a camera down where they pulled the PEG tube out of my bowel as it had made its way into there. Meanwhile, I lost all my weight and went back under 40kg.
June: Rushed to hospital by ambulance due to an allergic reaction to iv antibiotics and couldnt breathe. Good month as I went on a Chelsea football club stadium tour with Steph, my little bro's 18th birthday, had my PEG tube changed to a button, and went to Malaga in a villa with my friends.
July: Went back to the gym for the 1st time in years, had a 7 hour shopping trip with mummy for my 22nd birthday and my weight started to go back up!!
August: Day out with Steph at Madame Tussuads, day at Legoland with Scott, went to London for a photoshoot for 'Love It' magazine. Horrible news that my friend James who had CF suddenly passed away and I had a fight at the Jobcentre!! xx
September: 1st attempt at Yoga class with mummy, lung function and weight the highest its been since last year, article in 'Love It' magazine was published. Bloody feeding pump which beeped all damn night and ended up in the porch wrapped in a towel!!
October: Hospital m.o.t, getting drunk for daddys birthday, another great night out at a party, got a new smaller feeding pump, weekend in Rainham, and changing my PEG button which was terrifying but easy.
November: Holiday to York for a week with Scott and the doggies which was brilliant, and referred to Healthwise scheme for exercise. But was summond to court by ESA benefits as apparently i am well enough to work. Wankers.
December: Snow, lots of shopping for pressies, back to blonde hair, JLS concert, great xmas eve and xmas day!!
I have thought about my new years resolution: of course, it goes without saying that it will be to put the weight on and get my lung function up. However my target is....to be able to run. This may sound silly to some people but to me it would be great, even if its only for about a minute. I also want to continue to make the most of things and 'do more'. 2010, although the obvious bad things that happened, i can say that i had a good year and did lots!! I hope that continues and Ive already started a list on this blog on the tab 'My Year 2011', which has things im looking forward too. Positivity is very important to me, as without this, it's very hard to get through things.
I just want to say thank you to all the special people that have really helped me through this year: I have had many messages from friends and every single one means alot and makes me smile, however, i cant mention you all...so here are a few: my family of course who are amazing, scott and his family, my best friend Steph, my mates Ria, Joey, and Sirin, my family friend Michelle, and of course my brilliant CF team Lance and Jen. xxx
x Lots of love x
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