Just a wee quick update to let you know where things are at. I am still in hospital 8weeks and counting :) but things are pretty stable and I am still on that list which is good. They aren't too keen to send me home cause me being me likes to try and do too much when she goes home and shall we say maybe pushes the limits a little bit, and they are worried that if I go home for good I will just detoriate and end up back at square one which I so don't want to happen. Whereas being in hospital I am forced to sit here and do nothing. I don't like to admit this but I do kind of see their point. So we reached a compromise and I'm going to stay here as long as I get home one or two nights a week and then maybe we can look at being home long term. So pretty much I get out for good behaviour lol.
This week has been a good week with me weighing in at 42kg(can we say OBESE!!!!) and then on Tuesday night I was allowed to get out for the evening to go and see my boys (Westlife) I even took Dad along but secretly I think He really enjoyed it (though he would never admit that :)) It was a brilliant night and I must say Shane just gets better looking every time lol. Also my inflammatory markers in my blood went from being like 200 to 42 in the space of a few days which is really good. So that pleased us all. Lets hope it stays there!!
Got home overnight last night and slept in my own wee bed for the first time in weeks. AMAZING.So Im looking forward to my next wee outing home.To be honest its what keeps me going. This morning we had our first Newcastle scare. Mum, Dad,David Poppa and me went out for coffee and didn't mums phone go off with a witheld number, sure enough it was Newcastle so there was Dad and me looking at each other trying to piece together what they were saying to mun on the phone. Turns out they needed a blood sample from me and that was it. To be honest thats ok cause at least it means they are working at my stuff over there and keeping me in mind, and anyway it wouldn't have suited me anyway I was out enjoying coffee thank you very much :)
On Hidden Treasure front things are going really well and we are now up to about £94,000 which is awesome but keep it coming people cause I have an orphange to build afterwards. Also Dad was talking to the folks at Fields of Life yesterday and they are going to start building within the fortnight how awesome is that. God is just amazing and I am so excited to see the things that are achieved through this wee school and all the little kids that will hopefully get the chance to get to school thanks to all you guys. Thank you all so much. You are all legends. God Bless you all <3
Char
Friday, 7 May 2010
Tuesday, 20 April 2010
A New Chapter Begins
Ok so as you guys know I have been working to get my weight up to the necessary 39kg so that I could be placed on the transplant list.Well yesterday was weight day and I am pleased to say my weight is 39.7kg( I know Im a wee Fatty but aw well) I know this probably sounds strange but I am actually thrilled, I know this probably doesn't say alot for my faith in God but there was alot of time between September(when I was first placed on the list for all of...a week) and then with the stupid abcess and me losing a load of weight I honestly doubted whether or not I would actually get to this stage because for months and months the weight just wasn't going on. Although I was sick when I was away I only lost like 0.4kg which was really good(probably all the good food at Center Parcs) so if anyone from the NHS is reading this Center Parcs trips are fantastic forms of treatment lol :).
Well anyways as of now although I am still in hospital I am on the list and the only thing we are waiting on now is THE CALL which really could come at anytime, which means for once in our lives the Barrs will have to be organised and once I get home I'll have to pack that bag ready to drop everything and go once the phone rings.
I swear people God truly works miracles. To consider that I have went from having a lung abcess(which is pretty serious) to being placed on the lung transplant list all in the space of 6 months is pretty amazing and something tells me He is not done working miracles just yet.
God Bless you all and thank you for your continued prayers
Char
xx
Well anyways as of now although I am still in hospital I am on the list and the only thing we are waiting on now is THE CALL which really could come at anytime, which means for once in our lives the Barrs will have to be organised and once I get home I'll have to pack that bag ready to drop everything and go once the phone rings.
I swear people God truly works miracles. To consider that I have went from having a lung abcess(which is pretty serious) to being placed on the lung transplant list all in the space of 6 months is pretty amazing and something tells me He is not done working miracles just yet.
God Bless you all and thank you for your continued prayers
Char
xx
Thursday, 15 April 2010
Back After A Lovely Break
Just a quick blog entry to let you know after a LONG 6 weeks in hospital I managed to get away to The Barrs favourite place in the World (Center Parcs) It was so nice to get away with the family for a while and just to chill out and the weather was FANTASTIC. However all I really managed to do was sit and drink Starbucks (who's complaining lol). We got back on Tuesday and I ended up back in hospital the very same day, however things aren't too bad and I think a few days of good physio and rest and I will be flying. On a postive note my weight hasn't budged which is good and now it is starting to go up again. We are getting oh so very close to the necessary 39kg.
On the school front there isn't really much to report other than we are still waiting for them to begin building which we are hoping will begin really soon.
Sorry for such a quick update
Char
x
On the school front there isn't really much to report other than we are still waiting for them to begin building which we are hoping will begin really soon.
Sorry for such a quick update
Char
x
Sunday, 28 March 2010
Back on This Again
Oh my goodness I have just looked back on my blog and it has been a month since I have updated. Oops. There has been a lot happen in that month but one thing that hasn't changed is that I am STILL in hospital.
I came in orginally feeling generally unwell and therefore knowing that I needed rest and a change of antibiotics. However, the doctors and everyone thought it would be best to keep me in here to get my weight up to a suitable level so that I could get back on the transplant list, as I had been sitting steady for like the past 6 months with no progress being made. I agreed to this just because I'm just sick of sitting with nothing happening so I knew if I stayed in it would give the team time to look at different ways in which I could put on weight. This is where the problems started! You may remember way back in October the time I had the abcess after my Portacath got infected I had a PICC line put in my arm for easy administration of my antibiotics, well the doctors thought we could use this to put through TPN which is basically just nutrition that goes straight into the blood stream. This worked well for all of em 48 hours and then my PICC line decided it had had enough and that it would pack in. GRR!!! So I then had to come off my IV antibiotics and I swear I must be addicted to them because the minute I came off them my chest started to go downhill so quickly.
So then last week the decision was made to put in another Portacath but until then they would try and get a long line into my arm so that I could recommence with the IVS because by this stage I was feeling yucky and my weight gain just wasn't happening. So I waited and got my new port in which surprisingly went in with no problems at all (lets just hope it stays there). This means I have been able to have IVS again and the difference is unbelieveable I feel so much better than I did when I was off them. However we had to dump the idea of TPN as the infection risk with a Port is too great. This means I have stepped up my feeds through my peg tube so that I am getting about 2800 calories through it a day and also they have increased the dose of the tablets they give me to stimulate my appetite because before this I was eating nothing and just feeling sick. So finally the weight is starting to creep on and I am now at 37.2kg which I know is still a good bit away from 40kg but its a step in the right direction. It has been hard being in hospital for so long but they have let me go home overnight for one night every weekend and to be honest I think it is those litte trips home that have kept me going and back in to the crazy ways of the Barr household lol
On the project side of things, it is progressing really well with our total now being just over £80,000 WOW. Also a meeting was held with Fields of Life both in Portadown and Uganda (the joys of technology egh?) and originally they were going to build the primary one to three block and then the rest but from the meeting the decision was taken to build it all together in wait for it... TWO MONTHS!!!!! This means that we should hopefully see a nice new Hidden Treasure Primary School in as little as FOUR MONTHS!!! WOOHOO. Its all very exciting. Thank you so much to all of you that have contributed to the project it is truley amazing the response that I got.
Anyway I think that is all of the news from the last month. Promise to update the blog sooner next time and hopefully from the comfort of my own home. HAPPY EASTER everyone
Char
xx
I came in orginally feeling generally unwell and therefore knowing that I needed rest and a change of antibiotics. However, the doctors and everyone thought it would be best to keep me in here to get my weight up to a suitable level so that I could get back on the transplant list, as I had been sitting steady for like the past 6 months with no progress being made. I agreed to this just because I'm just sick of sitting with nothing happening so I knew if I stayed in it would give the team time to look at different ways in which I could put on weight. This is where the problems started! You may remember way back in October the time I had the abcess after my Portacath got infected I had a PICC line put in my arm for easy administration of my antibiotics, well the doctors thought we could use this to put through TPN which is basically just nutrition that goes straight into the blood stream. This worked well for all of em 48 hours and then my PICC line decided it had had enough and that it would pack in. GRR!!! So I then had to come off my IV antibiotics and I swear I must be addicted to them because the minute I came off them my chest started to go downhill so quickly.
So then last week the decision was made to put in another Portacath but until then they would try and get a long line into my arm so that I could recommence with the IVS because by this stage I was feeling yucky and my weight gain just wasn't happening. So I waited and got my new port in which surprisingly went in with no problems at all (lets just hope it stays there). This means I have been able to have IVS again and the difference is unbelieveable I feel so much better than I did when I was off them. However we had to dump the idea of TPN as the infection risk with a Port is too great. This means I have stepped up my feeds through my peg tube so that I am getting about 2800 calories through it a day and also they have increased the dose of the tablets they give me to stimulate my appetite because before this I was eating nothing and just feeling sick. So finally the weight is starting to creep on and I am now at 37.2kg which I know is still a good bit away from 40kg but its a step in the right direction. It has been hard being in hospital for so long but they have let me go home overnight for one night every weekend and to be honest I think it is those litte trips home that have kept me going and back in to the crazy ways of the Barr household lol
On the project side of things, it is progressing really well with our total now being just over £80,000 WOW. Also a meeting was held with Fields of Life both in Portadown and Uganda (the joys of technology egh?) and originally they were going to build the primary one to three block and then the rest but from the meeting the decision was taken to build it all together in wait for it... TWO MONTHS!!!!! This means that we should hopefully see a nice new Hidden Treasure Primary School in as little as FOUR MONTHS!!! WOOHOO. Its all very exciting. Thank you so much to all of you that have contributed to the project it is truley amazing the response that I got.
Anyway I think that is all of the news from the last month. Promise to update the blog sooner next time and hopefully from the comfort of my own home. HAPPY EASTER everyone
Char
xx
Sunday, 28 February 2010
Back In
Just a quick blog to let you guys know that I have been back in hospital for the last week just generally feeling rubbish and my weight down to 35.9 kg . However I was able to get home for the night last night so that is always a positive. Don't really know when I will get out however they are talking of keeping me here until I put a sufficent amount of weight on so that I can get on the list. As much as I dont like that idea part of me is telling me to go with the idea because at the minute we are sitting in limbo with my weight not going anywhere. So if it was to move things forward I might just do it for a while. Anyway I will keep you all up to date anyway and thanks again everyone for your continuing support and prayers
Char
xx
Saturday, 13 February 2010
Hello
Sorry for lack of updates.
Things are going well. I am just out of hospital yesterday after just being in a week. I just hadn't been feeling great at the end of last week so with some precusion from mum and dad I rang and they were able to see me rather than waiting and maybe getting worse therfore having to spend longer in hospital. So all and all it worked out well and I even managed to get out for a wee while both on the Sunday and the Wednesday. So I can't really complain :)
Everything is remaining steady with the main issue still being my weight but we are working on it. I am still on IV antibiotics but to be honest I think that is just going to be a way of life for me at the minute because as soon I come off them I just go down hill rapidly and to be honest I want to be able to stay as well as I can so that I can work on gaining weight and getting on that list. So now my new hobbie is just going to have to be to eat all around me lol :)
Seriously though thank you so much to you all out there who I know are remembering us and praying for us. I actually do not think I could get through any of this without you, God or my amazing family. Trust me as I have learnt in the last few months it's times like this where you really feel God's hand upon you.
Project wise things are continuing along nicely. We are still pushing towards the £100,000 and I firmly believe that we will reach our new target. Also we are in talks with Fields of Life in Uganda to begin the building of Hidden Treasure. It is actually so exciting and I would defintley say that with in a few months we will start to see the new school coming together!!! Isn't God good?
Things are going well. I am just out of hospital yesterday after just being in a week. I just hadn't been feeling great at the end of last week so with some precusion from mum and dad I rang and they were able to see me rather than waiting and maybe getting worse therfore having to spend longer in hospital. So all and all it worked out well and I even managed to get out for a wee while both on the Sunday and the Wednesday. So I can't really complain :)
Everything is remaining steady with the main issue still being my weight but we are working on it. I am still on IV antibiotics but to be honest I think that is just going to be a way of life for me at the minute because as soon I come off them I just go down hill rapidly and to be honest I want to be able to stay as well as I can so that I can work on gaining weight and getting on that list. So now my new hobbie is just going to have to be to eat all around me lol :)
Seriously though thank you so much to you all out there who I know are remembering us and praying for us. I actually do not think I could get through any of this without you, God or my amazing family. Trust me as I have learnt in the last few months it's times like this where you really feel God's hand upon you.
Project wise things are continuing along nicely. We are still pushing towards the £100,000 and I firmly believe that we will reach our new target. Also we are in talks with Fields of Life in Uganda to begin the building of Hidden Treasure. It is actually so exciting and I would defintley say that with in a few months we will start to see the new school coming together!!! Isn't God good?
Monday, 25 January 2010
I Can't believe I'm Posting This!!!!!
Ok I'm not going to waffle (probably the first time ever :)) but what I do want to say is never in a MILLION years could I have seen myself writing this post in January 2010. Let me just tell you a little of how this came about. As a lot of you know my health has detoriated greatly over the last eighteen months or so. April/May 2009 was a particulary bad time and the whole transplant issue had just been brought up (something which I personally really was not expecting) So anyway one evening mum dad poppa david and the girls came and took me out to Nandos @ Victoria Square(seriously in the Barr household food makes everything better!!!) and basically the topic came up of building a school in Uganda for the kids out there that don't have the luxury of going to school. Well let me tell you I went back to the City Hospital that night and could not sleep at all I was that excited about the plans.
July 2009: I was unable to go to Uganda with the rest of the family and instead spent a lovely summer in the city hospital. This is where they found the school Hidden Treasure and between facebook, emails and telephone calls between us we knew that this was the right school to build. I mean just take a look at the classroom
So I then started this blog at the end of August with a view to keep people up to date with my progress healthwise but also with the fundraising efforts and the building of Hidden Treasure Primary school.
So at present I am just home from hospital today after just a ten day stay and am feeling really good. Thanks to everyone on this blog it is thanks to you that I am feeling as good as I am because I was coming home to the news that....
Charlene's Project has raised the necessary £70,000. I actually do not know what to say apart from a MASSIVE thank you to every single one of you for your prayers, donations and support I could never in all my life have imagined that we would have the money in in the space of just five months. Isn't God great. Thank You. Thank You. Thank You.
So what now? Well we have been in talks with Fields of Life who are ready to start building right away. However we have been advised that it is best for the school to have a well so that the children and community can have an outlet for water and also teachers accommodation so we have moved the goal posts and are now aiming for £100,000 to meet these extra requirements and I know we can do it.
Thanks Again to absolutley EVERYBODY
God Bless as the Ugandans would say God is good all the time All the time God is good.
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