I had made plans a few months ago to spend the weekend of the 28Th December with J's mum and her husband so we were all very happy that it was still going ahead, so oxygen had been delivered to their house on the Thursday and there was enough leading to get me around the whole house and we had emergency cylinders and portable cylinders so everything was in place. My mum helped me pack my suitcase - well i say helped me she packed the whole thing whilst i watched and pointed at various items i wanted to take with me. I took so much stuff I looked like I was going away for a very long time but everything I took I needed, I was picked up by Colin J's step dad- he loaded everything into the boot for me and off we went.
I had a little tickly cough when I woke that morning and it didn't feel like a CF cough so I brought some cough medicine and thought that would help. When we got to their house it was all very lovely, their house is always very tidy, nothing out of place and they had a nice new carpet fitted so it looked even more so. We had lots of tea, chatted loads, they played the Wii (i still have not much energy so haven't had the courage to play - I think I'm a little bit scared of not knowing how out of breath i will get but I need to give it ago sometime otherwise it'd be a big waste of money) and had dinner, by this time I felt a little poorly so I went upstairs for abit but I didn't come back downstairs as I was sick and feeling quite rotten by this time, so I just watched some TV and went to bed, the next morning was pretty much the same I woke up with absolutely no energy, felt awful, felt a little dizzy, drowsy and had this rather annoying cough, i had a high temperature of 38.3 and thought I'd feel abit better later on, but I didn't, so I made the decision to go home. Everyone was so lovely, they packed up my bags for me and helping me so much I couldn't have asked for anything more, I was quite scared as I'd never actually felt like this before and I asked J to carry me to the car and Annie to call my mum and ask her to call the hospital as I defiantly needed to come back in. Whilst in the car J held my hand and it was lovely to have his support but I realised how scary this all must be for him - yes he's seen me poorly before and in hospital but he's never seen me sick and needing constant help from someone else and this must have been quite a shock to him. We arrived back at my house and just swapped my things from one car to another and I kissed everyone and off we went to the hospital. Once I arrived it was half 7, I had an x-ray, bloods done and various other samples done and the decision was made (finally) to change my drugs and the Dr said it had a viral infection and a low sodium level and was dehydrated so I was connected to a sodium chloride drip for 48 hours to help me feel better. So two days on I am slowly feeling better but I feel so tired and just like I've been completely wiped out, but hopefully things will pick up in the new year.
I think this new years eve I will be asleep before midnight.
Have a a fabulous 2008.
31 December 2007
30 December 2007
Christmas time
This is quite a long post so will do two installments.
On Friday 21st December I was discharged from hospital (with antibiotics), which I was delighted about as it meant I got to be home for Christmas and would be able to spend it with family and friends. When I got home I was going through my post (which is usually bills - mainly from topshop) and I had a wonderful totally unexpected surprise, a friend of mine had nominated me for a 'gift' from a charity the Chloe Janet Ball Trust, this was set up by a family who lost their daughter Chloe to Cf and wanted to help other CF sufferers have a lovely day out, the letter was beautifully written and they spoke of Chloe with such love and warmth, they gave a list of suggestions for what to spend the money on such as a weekend away, theatre tickets, a meal or if I like on bad days just spend it on lots of take-aways, on-line shopping - just spend it on myself. It was a wonderful surprise and I thank Emily for nominating me for this, I don't know what I will spend the money on yet but whatever I do I will do it in memory of Chloe and have a drink for her and her family.
Christmas did not run smoothly for me - Christmas eve was spent at the hospital as I felt quite ill and just plain rubbish so me and my mum decided to come up the hospital and see whether the Dr could swap my antibiotics around but unfortunately as Christmas in hospital's is rather manic (as I have found out) none of my samples were back so they could not see which drugs I was resistant and sensitive to so we came to the plan that i would take both an IV and an oral antibiotic and return on Thursday to see where we were at. I finally left the hospital at 8pm and one of my friends had organised a Christmas eve get together so I got my mum to drop me off there and pick me up afterwards. I only stayed for 2 hours as I was completely knackered. It was nice to see my friends but it also made me quite upset as they were all laughing, dancing and drinking and I couldn't do any of those things this year and probably won't next year either.
Christmas day I woke up and my brother jumped into my bed (mine is all snugly and soft so when in hospital he likes to sleep in it much to my disapproval). In the mornings it takes me quite a while to have a morning cough and wake up - I don't have any get up and go anymore, we went downstairs all opened up our presents, had breakfast and then played with everything we got.. I say played as if we are children but were not I am 22 years and my brother is 15 years but I got a Nintendo Wii this year (big smiley face) so when I am feeling well enough to play it for hours I shall be keeping fit and having fun all at the same time - perfect!. Towards the end of the day my chest was feeling very bad and even having a bath proved too much to bear so I just went to bed hopeing that boxing day would be better.
Boxing day arrived and every year all my dad's side of the family get together around my nan's house and we have a big Christmas dinner together which is absolutely delicious - in my opinion Nannies always make the best food. I was having a much better day the Christmas day with regards to my naughty chest so when I went back to the hospital on Thursday the Dr said to keep on with what I am doing and come back on the 2ND Jan to stop antibiotics.
On Friday 21st December I was discharged from hospital (with antibiotics), which I was delighted about as it meant I got to be home for Christmas and would be able to spend it with family and friends. When I got home I was going through my post (which is usually bills - mainly from topshop) and I had a wonderful totally unexpected surprise, a friend of mine had nominated me for a 'gift' from a charity the Chloe Janet Ball Trust, this was set up by a family who lost their daughter Chloe to Cf and wanted to help other CF sufferers have a lovely day out, the letter was beautifully written and they spoke of Chloe with such love and warmth, they gave a list of suggestions for what to spend the money on such as a weekend away, theatre tickets, a meal or if I like on bad days just spend it on lots of take-aways, on-line shopping - just spend it on myself. It was a wonderful surprise and I thank Emily for nominating me for this, I don't know what I will spend the money on yet but whatever I do I will do it in memory of Chloe and have a drink for her and her family.
Christmas did not run smoothly for me - Christmas eve was spent at the hospital as I felt quite ill and just plain rubbish so me and my mum decided to come up the hospital and see whether the Dr could swap my antibiotics around but unfortunately as Christmas in hospital's is rather manic (as I have found out) none of my samples were back so they could not see which drugs I was resistant and sensitive to so we came to the plan that i would take both an IV and an oral antibiotic and return on Thursday to see where we were at. I finally left the hospital at 8pm and one of my friends had organised a Christmas eve get together so I got my mum to drop me off there and pick me up afterwards. I only stayed for 2 hours as I was completely knackered. It was nice to see my friends but it also made me quite upset as they were all laughing, dancing and drinking and I couldn't do any of those things this year and probably won't next year either.
Christmas day I woke up and my brother jumped into my bed (mine is all snugly and soft so when in hospital he likes to sleep in it much to my disapproval). In the mornings it takes me quite a while to have a morning cough and wake up - I don't have any get up and go anymore, we went downstairs all opened up our presents, had breakfast and then played with everything we got.. I say played as if we are children but were not I am 22 years and my brother is 15 years but I got a Nintendo Wii this year (big smiley face) so when I am feeling well enough to play it for hours I shall be keeping fit and having fun all at the same time - perfect!. Towards the end of the day my chest was feeling very bad and even having a bath proved too much to bear so I just went to bed hopeing that boxing day would be better.
Boxing day arrived and every year all my dad's side of the family get together around my nan's house and we have a big Christmas dinner together which is absolutely delicious - in my opinion Nannies always make the best food. I was having a much better day the Christmas day with regards to my naughty chest so when I went back to the hospital on Thursday the Dr said to keep on with what I am doing and come back on the 2ND Jan to stop antibiotics.
22 December 2007
Busy days
Sorry for lack of postage, the last few days have been rather busy.
On Tuesday I did some more of my assessment and went out with Jean again and some of the other patients. We went around London to look at the various Christmas lights they had to offer, we went to Parliament square, Covent garden, Regent st, Oxford st, Carnaby st and some others - in Covent garden at 7 dials they had huge chandeliers hanging down they were gorgeous, the best lights I think - it was really lovely to get out and enjoy seeing the lights with other CF patients - something that rarely happens these days due to cross infection.
On Wednesday I went over to the Sydney street wing (the royal Brompton hospital is situated on two roads, Fulham road is more of a lung hospital where as Sydney street is more cardiac) to have an operation, I had my operation and was put to sleep for four hours, they gave my lungs a good clear out and when I woke I was talking about my exercise test and facebook which was funny. I was put out by anesthetic which is always a bit risky when you have problems with your lungs as this shuts down your entire body and causing the cilia to stop working, mine doesn't work too well anyways as my sectretions are rather thick so this can cause a chest infection and set you two steps back, so now I have a cold and another chest infection which is rather unfortunate as the plan on Friday was to come home off antibiotics but the good news is I have come home even if it is on antibiotics, I am due to go back to the hospital on Thursday to review my infection and see where we go from there.
Today I am just going to chill at home as I am rather tired, washing my hair took up a lot of energy this morning but I am going to have days like this and I don't want to complain too much as there is nothing I can do about this.
p.s - Assessment is all done!!
Much love over the Christmas period. xx
On Tuesday I did some more of my assessment and went out with Jean again and some of the other patients. We went around London to look at the various Christmas lights they had to offer, we went to Parliament square, Covent garden, Regent st, Oxford st, Carnaby st and some others - in Covent garden at 7 dials they had huge chandeliers hanging down they were gorgeous, the best lights I think - it was really lovely to get out and enjoy seeing the lights with other CF patients - something that rarely happens these days due to cross infection.
On Wednesday I went over to the Sydney street wing (the royal Brompton hospital is situated on two roads, Fulham road is more of a lung hospital where as Sydney street is more cardiac) to have an operation, I had my operation and was put to sleep for four hours, they gave my lungs a good clear out and when I woke I was talking about my exercise test and facebook which was funny. I was put out by anesthetic which is always a bit risky when you have problems with your lungs as this shuts down your entire body and causing the cilia to stop working, mine doesn't work too well anyways as my sectretions are rather thick so this can cause a chest infection and set you two steps back, so now I have a cold and another chest infection which is rather unfortunate as the plan on Friday was to come home off antibiotics but the good news is I have come home even if it is on antibiotics, I am due to go back to the hospital on Thursday to review my infection and see where we go from there.
Today I am just going to chill at home as I am rather tired, washing my hair took up a lot of energy this morning but I am going to have days like this and I don't want to complain too much as there is nothing I can do about this.
p.s - Assessment is all done!!
Much love over the Christmas period. xx
17 December 2007
Highs and lows
My life feels like it is all about CF and transplant at the moment and today it has really got me down, I am told to expect days when I am on a high and days when I am feeling really low but it's quite worrying as I am not even on the transplant list yet. Today is indeed a low day, I feel as though anything will set me off into a crying state, I was just speaking to my nan on the phone and I said I so desperately want my old life back but I know I can't have that and I need to learn to accept that but I'm finding it really hard.
Today I have done two assessment tests, a full lung function which involved me sitting in a big glass box and blowing into the machines and another blowing and inhaling a mixture of oxygen, helium, carbon monoxide and nitrogen, I also did an excerise test - this was a bleep test so I had to walk from cone to cone and keep in time with the bleep, I managed 130 metres on 2 litres of oxygen and was told to stop due to high heart rate and low saturation's - both of these tests I had been dreading but they weren't as bad as i had thought.
Today I have done two assessment tests, a full lung function which involved me sitting in a big glass box and blowing into the machines and another blowing and inhaling a mixture of oxygen, helium, carbon monoxide and nitrogen, I also did an excerise test - this was a bleep test so I had to walk from cone to cone and keep in time with the bleep, I managed 130 metres on 2 litres of oxygen and was told to stop due to high heart rate and low saturation's - both of these tests I had been dreading but they weren't as bad as i had thought.
16 December 2007
Weekend
I have become some what addicted to sudoku! J lent me his Nintendo DS for brain training as my memory could be a little better ;) but I seem more interested in sudoku. I remember when all the hype was about and I really didn't understand it but now that I do I find myself browsing when shopping and saying such things as 'ooh look a sudoku puzzle book' something I never thought I would be saying! it has become part of my daily routine - wake up, have tea, physio, meds, 'must play sudoku and brain training' then I begin to get ready for the day ahead, can someone cure my addiction?
Friday afternoon I had an appointment with a dentist at the Royal Marsden hospital in Chelsea, this was part of my assessment and I am pleased to say that my mouth is medically fit - so that is another one ticked. When I arrived back from the Marsden my mum was in my room waiting to take me home for the weekend, but before we went home we took a minor detour and went shopping down the Kings road, we got some more Christmas presents and that is it, finally all of my Christmas shopping is done and I must say it has been rather expensive but I did most of it on the Internet (another addiction I have, topshop, me, card = bad!) my mum calls me everyday saying 'you have another parcel' and tomorrow will be no different. So when I got home from shopping it was late but I had enough time for a hot bath which was gorgeous and then I was snuggled up in my own bed, looking forward to a well deserved lie in. Saturday came and I did not get my lie in, my mum woke me at half 9 with a cup of tea and said Sunday's are for lie In's and so the day began, I went to superdrug to get odd beauty bits I needed, I walked around the whole shop and was very pleased with myself and decided that I deserved to treat myself to all those expensive things i brought which were not on the list ;) then we went to the cemetery to visit my sisters grave (it was her birthday on the 10Th and due to being in hospital I didn't get the opportunity to go) and again I walked to the grave and back to the car, then we went to a local shopping outlet to look for some things my brother needed. Whilst parking a man parked into the disabled bay next to us and clearly was not disabled and did not have a badge so my mum politely said to him 'these bays are for disabled people' well I shall not repeat his response to this but lets just say he did not move his car he just walked (quite well) to the sports shop - some people are so ignorant, don't they stop to think someone less abled then myself needs to park closer to the shops? it makes me so angry.
Sunday I woke up early as me, J, his mum and his step dad were going out for Sunday lunch. I was picked up at 1ish and we went to the harvester, it was very busy as people were having their Christmas meals and I was worried we might be seated up stairs but luckily we got a booth near by, I had a little glass of wine with my meal. It was really nice to be out with J's family as I don't get to see them often and when we do meet it's really good to have a catch up and hear about the things they have been up to. I am planning on staying at theirs on the 28Th Dec, but those with CF know never to plan things as your health changes from day to day so it makes planning things quite difficult but I have arranged oxygen to be delivered to theirs and if i do fall ill (which I am preying I won't) all i have to do is cancel it, but I am really looking forward to a nice break away and spending some time with J. After the meal I went back to J's and we watched Chelsea vs Arsenal and then we took some funny photo's of ourselves on his laptop (when he emails the pictures to me I'l be sure to put one up on here) anyways I think I have written too much and I think I might begin to ramble.. I've had a lovely weekend at home and I feel really good - it feels strange being back in the hospital now when I don't feel UN-well (well there's a first for everything isn't there?)
Friday afternoon I had an appointment with a dentist at the Royal Marsden hospital in Chelsea, this was part of my assessment and I am pleased to say that my mouth is medically fit - so that is another one ticked. When I arrived back from the Marsden my mum was in my room waiting to take me home for the weekend, but before we went home we took a minor detour and went shopping down the Kings road, we got some more Christmas presents and that is it, finally all of my Christmas shopping is done and I must say it has been rather expensive but I did most of it on the Internet (another addiction I have, topshop, me, card = bad!) my mum calls me everyday saying 'you have another parcel' and tomorrow will be no different. So when I got home from shopping it was late but I had enough time for a hot bath which was gorgeous and then I was snuggled up in my own bed, looking forward to a well deserved lie in. Saturday came and I did not get my lie in, my mum woke me at half 9 with a cup of tea and said Sunday's are for lie In's and so the day began, I went to superdrug to get odd beauty bits I needed, I walked around the whole shop and was very pleased with myself and decided that I deserved to treat myself to all those expensive things i brought which were not on the list ;) then we went to the cemetery to visit my sisters grave (it was her birthday on the 10Th and due to being in hospital I didn't get the opportunity to go) and again I walked to the grave and back to the car, then we went to a local shopping outlet to look for some things my brother needed. Whilst parking a man parked into the disabled bay next to us and clearly was not disabled and did not have a badge so my mum politely said to him 'these bays are for disabled people' well I shall not repeat his response to this but lets just say he did not move his car he just walked (quite well) to the sports shop - some people are so ignorant, don't they stop to think someone less abled then myself needs to park closer to the shops? it makes me so angry.
Sunday I woke up early as me, J, his mum and his step dad were going out for Sunday lunch. I was picked up at 1ish and we went to the harvester, it was very busy as people were having their Christmas meals and I was worried we might be seated up stairs but luckily we got a booth near by, I had a little glass of wine with my meal. It was really nice to be out with J's family as I don't get to see them often and when we do meet it's really good to have a catch up and hear about the things they have been up to. I am planning on staying at theirs on the 28Th Dec, but those with CF know never to plan things as your health changes from day to day so it makes planning things quite difficult but I have arranged oxygen to be delivered to theirs and if i do fall ill (which I am preying I won't) all i have to do is cancel it, but I am really looking forward to a nice break away and spending some time with J. After the meal I went back to J's and we watched Chelsea vs Arsenal and then we took some funny photo's of ourselves on his laptop (when he emails the pictures to me I'l be sure to put one up on here) anyways I think I have written too much and I think I might begin to ramble.. I've had a lovely weekend at home and I feel really good - it feels strange being back in the hospital now when I don't feel UN-well (well there's a first for everything isn't there?)
13 December 2007
More assessment
I had more of an early start then usual this morning, I was sitting in my bed drinking tea when the nurse came in and kindly informed me the porter was on his way up to take me to the other side of the hospital (which happens to be on a completely different street) for a ultra sound on my stomach, So i had to quickly brush my hair, pop on a jumper and my slippers then off I went - according to the ultra sound man all is looking very normal which is good! and I came back here where there was a lady waiting to connect me to a 24 hour heart monitor, so that's another two things I can cross off my assessment list - yey!!!
This afternoon the hospital had carol singers come up to the ward, it brought everyone out of their rooms and all together chatting and laughing, there was malt wine and mince pies. It was really lovely to see. Tonight my friend and her boyfriend are coming to visit me should be good fun.
I would like to thank everyone for their kind comments, it's nice to know people are reading. xx
This afternoon the hospital had carol singers come up to the ward, it brought everyone out of their rooms and all together chatting and laughing, there was malt wine and mince pies. It was really lovely to see. Tonight my friend and her boyfriend are coming to visit me should be good fun.
I would like to thank everyone for their kind comments, it's nice to know people are reading. xx
12 December 2007
Dinner out
I've had such a good evening! My lovely boyfriend came to see me (big smiley face) it's always great to see him and he always makes me smile, laugh and just happy. First of all we had a nice catch up and he showed me his nice new coat - he looked very handsome, then we went for a walk to the lift and back, then we went out to a local restaurant called cactus blue for some dinner. I chose from the tapas menu so i had mini nachos, tiger prawns with chili sauce and mini tomato bruchetta's and a coke and J had a messy burger (proper name for it, and yes it did look like a mess with the amount of stuff they put in it!) with skinny chips and a coke, it was so lovely to be out for dinner with him as I have been in hospital for quite some time and I felt like I was back to myself again (I feel really good today) and it was great, we held hands over the table and I loved being out with him, then it was back to the hospital, J made my wheelchair ride back to the hospital somewhat interesting with little swerves here and there, felt like an obstacle course!! when we got back to the hospital we went to the kitchen and made some tea, popped in to see my friend Kate who had been admitted today then back to my room. I had a wonderful evening and I can not wait to do it again!!!! I am a very happy Lady tonight.
10 December 2007
situations
You learn to adapt to the situations you are in and it's the same with poor health, my decline has not been a rapid decline it is progressive and slow, so slow you don't see it happening and you slowly adapt to the things you can and can't do, like walking for instance - when I would go shopping I'd walk to a certain amount until i needed to sit down but I'd make up excuses to sit down such as 'my feet are hurting' 'I've got a text/I need to send a text' little things that enabled me to sit down and get my breath back and make others totally oblivious to the fact that I was indeed struggling. But there comes a point when you need to accept that you are indeed having a tough time and you do need some help even though you don't want to believe it. In May this year I was told I'd need to use some oxygen whilst walking as my saturation's would drop dangerously low and make my heart need to work harder and cause strain on my heart (an added problem I could do without) but at the time I refused to accept that I would need oxygen and I went home with it but never with the intension of using it. I carried on doing the things I did before, using the same excuses and getting away with it, it was only in August when I came in for 10 days intra-veinous antibiotics which turnout out to be a 3 month stay in hospital on oxygen 24/7 and still with the hope that my saturation's would indeed go up and I'd carry on as before, but this never came and I have had to learn to accept that I do indeed need oxygen to help me live my life and carry on doing the things I enjoy doing without the struggle. October came and I had planned a big evening out with my mum for her Birthday, we were going to go out for an expensive dinner in London and then out to watch a show and I had every intension of walking in and out of the restaurant and into the theatre but as time grew closer to the event itself the physios gently suggested to me that it would indeed be an idea to look into getting a wheelchair and use this to take to the theatre - again i found it very hard to accept this as I would be relying on someone else to take me out and lose what independence I had, it took a while to get my head around the idea of using these things to make my life easier but I now have chose to accept it and I do get upset about it and I hate the fact that I can not just nip to the shops randomly as I did before but my wheelchair and my oxygen are my tools to help me get around and continue to live my life as best as I can.
I never think of myself as 'ill' this is because I know no different, it's only when someone from the outside asks me questions about my health and I begin to tell them such things as my daily regime that I realise this is quite bad. I was telling a woman today about CF and she asked if i took medication and I said yes, I take 12 with meals, antibiotics, nebulised antibiotics, physiotherapy, inhalers, various other nebulisers and so on and she said 'oh my god' and I just thought to myself gosh to someone who has never done anything like that in their whole life it must sound like an awful lot to take on but when you have done it your entire life you don't think twice.
I never think of myself as 'ill' this is because I know no different, it's only when someone from the outside asks me questions about my health and I begin to tell them such things as my daily regime that I realise this is quite bad. I was telling a woman today about CF and she asked if i took medication and I said yes, I take 12 with meals, antibiotics, nebulised antibiotics, physiotherapy, inhalers, various other nebulisers and so on and she said 'oh my god' and I just thought to myself gosh to someone who has never done anything like that in their whole life it must sound like an awful lot to take on but when you have done it your entire life you don't think twice.
8 December 2007
Weekend leave
Whilst in hospital I get weekend leave which is fab as the ward is so quiet on a weekend the days just drag - it's OK to be here in the week as your so busy seeing Dr's, nurses, having various observations done that the time just fly's but weekends are quite boring, so this week I managed to get out early and leave on Thursday.. Yey! Thursday evening was a nice relaxing one at home, spent time with my family, had a nice bath and snuggled up in my bed watching Eastenders, yesterday I did pretty much the same - except my boyfriend came over and stayed the nightwhich was very lovely as after the transplant talk I have been quite down but my friends and family are so amazing that they make me smile and take my mind off things, which is another great thing about weekend leave - I get to see all the people I care about who I otherwise don't get to see in the week as my hospital is quite a way and when you've been at work all day, had dinner, waited for the congestion charge to end it can be quite tiring driving here and then back so that makes weekend leave great!
Unfortunately my weekend was cut short as today (Saturday) I feel quite tired and just plain rubbish really so I have decided to come back just in case I got worse during the night, so here I am I'm going to have a shower and an early night. Was suppose to go to the cinema tonight with my boyfriend too :'( but he's on Christmas holidays from uni so hopefully we'll get to do it very soon!
Unfortunately my weekend was cut short as today (Saturday) I feel quite tired and just plain rubbish really so I have decided to come back just in case I got worse during the night, so here I am I'm going to have a shower and an early night. Was suppose to go to the cinema tonight with my boyfriend too :'( but he's on Christmas holidays from uni so hopefully we'll get to do it very soon!
7 December 2007
Transplant talk
Yesterday I had a big transplant talk with my CF specialist nurse, my parents were going to come to this to help support me but unfortunately my mum couldn't get anyone to cover her work so I said I'd be fine to have it alone and they will book their own appointment with her and have the talk another time.
It started at 3 and we went through all the various topics such as death before transplant as unfortunately not all people on the transplant list get their call in time and sadly die waiting, she said that they will not offer me intensive care ventilation if I got to that point as they don't think it's the nicest way to die, I need to talk with my family about my wishes - if not talk write it down so they have some help when I have gone, they usually offer a transplant to a patient when they have about 18 months to 2 years left to live and that the waiting time for transplant is minimum 18 months (which doesn't sound too good when you only have 18 months to 2 years left to live.) Transplant is not a cure, you are swapping one set of problems for another set, side effects of drugs, then she said now for the good stuff - transplants when they work are great, you can go on holiday (ideally to places with good medical care and transplant care) which is a shame as I have always liked the idea of going to Thailand and seeing the beautiful beaches they have to offer but I would much rather be able to be alive and breathe so Thailand can take a back seat, we spoke about the procedure, the lines I'd wake up with - a neckline, 6 chest drains, a line in my wrist, a cafater - and she said whilst in recovery you do not have any dignity but they've seen it all before - the talk was really tough and I've only written some of the things that were said as to be honest there was lots to take in and slowly bits of what she did say are coming back to me as when she said about the whole dying before transplant thing my mind kept thinking about that which I guess is why it's best to do these things with family or partners as people can talk about things you may have missed.
This talk has really made the situation I am in hit home and transplant is tough it is not an easy decision and it is not as black and white as people on the outside may think, I am going to take my time to think about what I'd like to happen if I do pass away before transplant which is a very upsetting thought and is something no one should have to do but it needs to be done and I'd like to make it easier for my family if that does happen - I never thought I'd have to plan my own funeral.
It started at 3 and we went through all the various topics such as death before transplant as unfortunately not all people on the transplant list get their call in time and sadly die waiting, she said that they will not offer me intensive care ventilation if I got to that point as they don't think it's the nicest way to die, I need to talk with my family about my wishes - if not talk write it down so they have some help when I have gone, they usually offer a transplant to a patient when they have about 18 months to 2 years left to live and that the waiting time for transplant is minimum 18 months (which doesn't sound too good when you only have 18 months to 2 years left to live.) Transplant is not a cure, you are swapping one set of problems for another set, side effects of drugs, then she said now for the good stuff - transplants when they work are great, you can go on holiday (ideally to places with good medical care and transplant care) which is a shame as I have always liked the idea of going to Thailand and seeing the beautiful beaches they have to offer but I would much rather be able to be alive and breathe so Thailand can take a back seat, we spoke about the procedure, the lines I'd wake up with - a neckline, 6 chest drains, a line in my wrist, a cafater - and she said whilst in recovery you do not have any dignity but they've seen it all before - the talk was really tough and I've only written some of the things that were said as to be honest there was lots to take in and slowly bits of what she did say are coming back to me as when she said about the whole dying before transplant thing my mind kept thinking about that which I guess is why it's best to do these things with family or partners as people can talk about things you may have missed.
This talk has really made the situation I am in hit home and transplant is tough it is not an easy decision and it is not as black and white as people on the outside may think, I am going to take my time to think about what I'd like to happen if I do pass away before transplant which is a very upsetting thought and is something no one should have to do but it needs to be done and I'd like to make it easier for my family if that does happen - I never thought I'd have to plan my own funeral.
5 December 2007
Before I go to sleep
I usually find that before I go to sleep my mind spirals out of control with thoughts and feelings about there here and now and the future, last night I was thinking about if I get to go on the transplant list and what it would feel like to get the call and my toes curled at the thought of this as it is so very scary. I often think that I'd pass out with excitement, anxiety and every other possible emotion, I also think about what it'd feel like saying goodbye to all my loved ones before the procedure and not knowing what the future holds for me. I get really scared by the thought of not getting the call but I also get scared about the call and I don't know why all I know is I don't want to die, I'm not ready.
My mind also drifts in and out of day dreams of my possible future, what I'd like to do, where I'd like to go, how it'd feel to do things everyone else can easily do - yesterday and today I have been for small walks with the physios to help strengthen my muscles and stop me relying on the wheelchair so much and I felt like I'd accomplished something, I felt so proud of myself and I thought to myself it's stupid really because it's something others find so simple and my news for the day to family and friends is 'I went for a walk today' where as other peoples days are somewhat more interesting and I want mine to be like others so much -a friend of mine just text me and said she was sorry she hadn't called me tonight she'd been at work, done stuff after work, had dinner and has just sat down but she'll call me tomorrow & for some reason this upset me, I think it is because I have waited all day for people I love to finish work etc so I can speak to them about their day and all the interesting things they have been doing and today I didn't get a chance to do that and I do understand how busy people are but it is just disheartening when something doesn't happen. I just want my life to be full of things other then this hospital, I want my life to be different to this and it really gets me upset but i guess patience is the answer.
My mind also drifts in and out of day dreams of my possible future, what I'd like to do, where I'd like to go, how it'd feel to do things everyone else can easily do - yesterday and today I have been for small walks with the physios to help strengthen my muscles and stop me relying on the wheelchair so much and I felt like I'd accomplished something, I felt so proud of myself and I thought to myself it's stupid really because it's something others find so simple and my news for the day to family and friends is 'I went for a walk today' where as other peoples days are somewhat more interesting and I want mine to be like others so much -a friend of mine just text me and said she was sorry she hadn't called me tonight she'd been at work, done stuff after work, had dinner and has just sat down but she'll call me tomorrow & for some reason this upset me, I think it is because I have waited all day for people I love to finish work etc so I can speak to them about their day and all the interesting things they have been doing and today I didn't get a chance to do that and I do understand how busy people are but it is just disheartening when something doesn't happen. I just want my life to be full of things other then this hospital, I want my life to be different to this and it really gets me upset but i guess patience is the answer.
4 December 2007
A little trip out.
I had a really nice afternoon, I managed to get out for a little trip out- yey! it's so nice to just get out and away from the hospital and think about something else for a change.
I went with a woman called Jean who comes to the ward every Tuesday and offers to take the patients out on trips - not many people go on these trips due to cross infection risks so this afternoon it was just me and Jean but it was great as I got to choose where we went so I chose Covent Garden. We left the hospital at 2 so I had to make sure I had ordered a full tank of oxygen and had my drugs early. I discovered Covent Garden is not exactly wheelchair friendly as the cobbles are all different shapes and sizes but that didn't stop us going around all the market stalls and seeing everything they had to offer, the Piazza was decorated so lovely, with lights and there was a big sculpture outside - four baul bauls, so big you couldn't get your arms around them! I never really realised how beautiful it is as most times I've been I've been thinking about my breathing and got all hot and flustered from getting from one place to the next so I have never really had the chance to stop and take it all in and I had that opportunity today and it was a wonderful experience. We went around the market from stall to stall and into some shops - my boyfriend works in Covent Garden and we had arranged to meet at some point whilst I was out, so he called when I was in one of the shops and asked where I was and for a moment I hesitated to tell him and I got worried he was out of work and might come to the shop to meet us and I really didn't want him to see me in my wheelchair and on oxygen, my eyes watered at the thought of this, it's stupid really as he's seen me in the chair before and I have been using oxygen since August and I know he doesn't care as it makes things easier for me and makes me feel alot better and he loves me for me. So we arranged to meet in Starbucks for a drink and it was really nice I had a hot chocolate with cream, Jean had a hot chocolate too and J came in and ordered a tea, we all had a nice little chat and J went back to work whilst me and Jean went around some more of the market and I brought a studded belt (one I've been wanting for ages and now with all my new weight I can finally buy a proper leather belt.. woo! and next on the hit list is a new pair of jeans but I'll save those until another shopping trip) on the way back to the hospital we drove past all the major landmarks in London which was really nice. We got back to the hospital around 5 which was just as well as I had used up all the oxygen and was on the red, I saw a few people in the patient room from my old hospital so I stayed in the patient room for a while and had a nice little chat with a cup of tea then went back to my room to try on my new belt and get settled for the evening.
My over all thought of the day - A wonderful day out.
I went with a woman called Jean who comes to the ward every Tuesday and offers to take the patients out on trips - not many people go on these trips due to cross infection risks so this afternoon it was just me and Jean but it was great as I got to choose where we went so I chose Covent Garden. We left the hospital at 2 so I had to make sure I had ordered a full tank of oxygen and had my drugs early. I discovered Covent Garden is not exactly wheelchair friendly as the cobbles are all different shapes and sizes but that didn't stop us going around all the market stalls and seeing everything they had to offer, the Piazza was decorated so lovely, with lights and there was a big sculpture outside - four baul bauls, so big you couldn't get your arms around them! I never really realised how beautiful it is as most times I've been I've been thinking about my breathing and got all hot and flustered from getting from one place to the next so I have never really had the chance to stop and take it all in and I had that opportunity today and it was a wonderful experience. We went around the market from stall to stall and into some shops - my boyfriend works in Covent Garden and we had arranged to meet at some point whilst I was out, so he called when I was in one of the shops and asked where I was and for a moment I hesitated to tell him and I got worried he was out of work and might come to the shop to meet us and I really didn't want him to see me in my wheelchair and on oxygen, my eyes watered at the thought of this, it's stupid really as he's seen me in the chair before and I have been using oxygen since August and I know he doesn't care as it makes things easier for me and makes me feel alot better and he loves me for me. So we arranged to meet in Starbucks for a drink and it was really nice I had a hot chocolate with cream, Jean had a hot chocolate too and J came in and ordered a tea, we all had a nice little chat and J went back to work whilst me and Jean went around some more of the market and I brought a studded belt (one I've been wanting for ages and now with all my new weight I can finally buy a proper leather belt.. woo! and next on the hit list is a new pair of jeans but I'll save those until another shopping trip) on the way back to the hospital we drove past all the major landmarks in London which was really nice. We got back to the hospital around 5 which was just as well as I had used up all the oxygen and was on the red, I saw a few people in the patient room from my old hospital so I stayed in the patient room for a while and had a nice little chat with a cup of tea then went back to my room to try on my new belt and get settled for the evening.
My over all thought of the day - A wonderful day out.
3 December 2007
Assessment
This year has been the hardest year for me, my health has just been so up and down and over all I'd say I've managed to spend about 6 weeks out of hospital.
In October the professor said to me I needed to think about whether I wanted new lungs and I do, but it's so scary. I want it but I don't want to have to go through it and it almost feels as though It's not happening to me like I'm watching it happen to someone else. I have days when I don't think it's really happening then all of a sudden it creeps up on you and I get so scared and just cry, have so many emotions floating around I just don't know what to do with them all.
I am currently in hospital and have been for the last 3 weeks, and every day is the same, your rudely woken by the cleaners changing the bins and trying their hardest (well it seems that way) to wake you, 8 o'clock - the catering staff change your water jug (still trying to sleep) 8.15am the student nurse turns on the light (because she needs to see) to do routine observations - these are blood pressure, oxygen saturation's, heart beat per minute and temperature, 8.30am catering staff come in and shout (I'm not lying) 'BREAKFAST? TEA OR COFFEE?' I usually say yes and they put in on my bedside table so I can eat it at 10.30, and at 9.30 the physio comes in to help me clear out the stuff from my chest which does help I just wish it didn't need to be done so early but it does so I shouldn't really complain. As you can tell I am not a morning person and don't get me wrong I am not complaining about the hospital as I can not fault them at all, the staff are brilliant at what they do, the facilities are fantastic and the care is great - I just don't like the ridiculous times things need to be done.
So today The Dr came to see me (he's quite young so he's a lot easier to talk to and have a joke with) and we did some more of my transplant assessment. He needed some information about my medical history and asked things such as 'have I ever had major surgery? have I had a pneumothorax? Have I ever done hard drugs? (of course not!) do I smoke? (of course not!) have I ever had any major bleeds? and then he handed me a blood testing form with lots of various different tests circled - there must have been about 20 different things I am being tested for, as I said in the beginning of the post transplant is scary but the assessment is also very scary but someone said to me last week to think of this a a bigger annual review so that's how I am looking at it.
In October the professor said to me I needed to think about whether I wanted new lungs and I do, but it's so scary. I want it but I don't want to have to go through it and it almost feels as though It's not happening to me like I'm watching it happen to someone else. I have days when I don't think it's really happening then all of a sudden it creeps up on you and I get so scared and just cry, have so many emotions floating around I just don't know what to do with them all.
I am currently in hospital and have been for the last 3 weeks, and every day is the same, your rudely woken by the cleaners changing the bins and trying their hardest (well it seems that way) to wake you, 8 o'clock - the catering staff change your water jug (still trying to sleep) 8.15am the student nurse turns on the light (because she needs to see) to do routine observations - these are blood pressure, oxygen saturation's, heart beat per minute and temperature, 8.30am catering staff come in and shout (I'm not lying) 'BREAKFAST? TEA OR COFFEE?' I usually say yes and they put in on my bedside table so I can eat it at 10.30, and at 9.30 the physio comes in to help me clear out the stuff from my chest which does help I just wish it didn't need to be done so early but it does so I shouldn't really complain. As you can tell I am not a morning person and don't get me wrong I am not complaining about the hospital as I can not fault them at all, the staff are brilliant at what they do, the facilities are fantastic and the care is great - I just don't like the ridiculous times things need to be done.
So today The Dr came to see me (he's quite young so he's a lot easier to talk to and have a joke with) and we did some more of my transplant assessment. He needed some information about my medical history and asked things such as 'have I ever had major surgery? have I had a pneumothorax? Have I ever done hard drugs? (of course not!) do I smoke? (of course not!) have I ever had any major bleeds? and then he handed me a blood testing form with lots of various different tests circled - there must have been about 20 different things I am being tested for, as I said in the beginning of the post transplant is scary but the assessment is also very scary but someone said to me last week to think of this a a bigger annual review so that's how I am looking at it.
1 December 2007
First post
This is my first post so I think I should start with introducing myself..
I am 22 years old and am currently being assessed for a double lung transplant caused my an genetic illness called Cystic Fibrosis which is slowly destroying my lungs. I have spent large amounts of time this year in hospital due to re-occurring chest infections. I am trying to remain as positive as I can whilst I wait to find out whether I am eligible to go on the waiting list for a double lung transplant which will save my life and enable me to live a happy and healthy life. If you want to learn more about Cystic Fibrosis please visit the website www.cftrust.org.uk or if you want more information about organ donation please visit http://www.uktransplant.org.uk/.
Well it's late and I will post more soon.
I am 22 years old and am currently being assessed for a double lung transplant caused my an genetic illness called Cystic Fibrosis which is slowly destroying my lungs. I have spent large amounts of time this year in hospital due to re-occurring chest infections. I am trying to remain as positive as I can whilst I wait to find out whether I am eligible to go on the waiting list for a double lung transplant which will save my life and enable me to live a happy and healthy life. If you want to learn more about Cystic Fibrosis please visit the website www.cftrust.org.uk or if you want more information about organ donation please visit http://www.uktransplant.org.uk/.
Well it's late and I will post more soon.
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