Very short post today I’m afraid, have not had too good a week, been increasingly breathless everyday and feeling generally a bit rubbish so today I called the doctor. Blood tests show raised levels but nothing too significant so am just having 3 days of higher dose steroids and a week of extra antibiotics at home. Hopefully they will sort me out.
Just to keep everyone updated and explain why I haven’t responded to emails and texts, I will catch up asap, sorry! Xxx
This week has been quite a bit easier, breathing seems more settled and I am getting a good amount of sleep. Eating well and weight finally up a bit to 37.4kg.
Had a bit of a shock when my iPad didn’t work- I was internet less for 2 whole days and had to find something else to occupy my time! So Mum and I have been filing nearly 2 years worth of paperwork this week, it’s been tiring for me and all I have had to do is boss about! We have done well though and I’m feeling very organised and even better I now am back online 🙂
I watched my first bit of tv in 2011 this morning and watched the end of Chris Moyles, I really like him. Think I would like to meet him, more than most celebrities anyway!
Think that’s about all I have to report for his week, apart from I have started a transplant sweepstake! Guess the day of my op… £5 a go and the money goes to the winner or a lung charity. Anyone interested then let me know! Just a bit of fun really… But I need the £5 before il write your date in- I’m being strict with the rules otherwise it will all get too confusing!
Hope you have all had a good week! Xx
Im a bit fed up I’m afraid! Not going to moan too much but it’s not been a great week breathing wise, haven’t actually been ill but breathing has just been very hard work and so I get incredibly tired. Thankfully I have been sleeping well so that’s going to help me get on top of it hopefully. Feeling a bit better today 🙂
With breathing being difficult, I have been struggling to keep the eating up and have therefore lost weight since coming home. I got my new scales yesterday and was slightly depressed by them. I’m 37.1kg today so not great. The thing is not to dwell but just keep eating- this is exactly what happens with lung disease, it’s a constant battle to keep the weight on because of all the energy you use breathing. Im really pleased to be at home but i do think it is harder work and making me a bit more tired.
I have come across a brilliant story ‘the spoons theory’ which sums things up pretty well I think! Follow this link and have a read:-
I have seen a specialist respiratory nurse today who will visit and monitor me at home which is very helpful.
So that really brings another week to a close, will be spending this weekend resting and eating…. Oh and listening out for that phone call!! Xx
So it’s been a whole week at home, so far so good and it’s been fairly uneventful which is usually a good thing!
Not a lot to report, just been settling back into home routines, and getting used to being responsible for myself. Had a slight cough and throat thing going on but never bad enough I felt I needed more help but enough to make me more wheezy. Been very tired but have been sleeping really well thankfully.
Weight was coming on but the scales broke at the weekend (unfortunately not because I’m too heavy!!) so haven’t got current figures available!
My oxygen concentrator died on Sunday morning which was our first little panic but phil got me sorted on a cylinder and went and picked me a new one up so all sorted. This one is a nicer grey colour rather than brown and quite a bit quieter which is good.
I have a telephone appointment with Harefield hospital tomorrow morning, hopefully they should be pleased with me and we will see if that helps with any future planning. Still no plans to move to uk yet.
Overall, I’m just really enjoying being at home after so many weeks in hospital and think Disney is very pleased to have her constant company and markie supply back!
Pancake day tomorrow which i will be making the most of! Xx
Firstly and most importantly I am typing this from home! 🙂
Had a rather frustrating day yesterday, still hadn’t had much sleep for quite a few nights and although my chest is clear I do have a bit of a cough starting. First of all they decided to keep me in until wednesday and then they changed their minds that I should go but they will hold my room for 48 hours to see if I’m ok at home.
I was happy with that decision as really wanted to get home but obviously not taking any risks.
My transport was booked for 2pm so Phil came and cleared my room and I got all ready and then I sat there ready to go for over 2 hours waiting to get picked up. It was very annoying and I was really tired by the time we started leaving.
Anyway, the ambulance men were lovely and the journey all went smoothly, Disney was really pleased to see me and keeps coming over for little cuddles which is lovely. Phil doesn’t but I think he is pleased to have me home too! 😉 I should mention the house is looking great and has obviously had a sort out while I’ve been away so well done Phil…. Just hope all my shoes have made it through the cull!
I slept like a baby last night, all through the night which I don’t often do and all seems fine so far. Just watching the cough and obviously I still have a lot of sleep to catch up on.
Weight today is a whopping 38.7kg, let’s see if I can get over the 39kg barrier soon which I haven’t been anywhere near for a year.
Will update soon when I have more news but for now it’s just relax and enjoy being at home xxx