A Quick Update

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

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

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

A Good Day All Round

Just a quick update on how my appointment with the transplant folk went today.

Obviously I have been suspended from the list since I got that stupid abcess about three months ago and the risk of it bursting during the operation would have been too great to take(trust me to do things in style huh?) The team from Newcastle wanted to review me to see what the situation was with the abcess and my weight.

All and all they were pretty happy with me and although the folk from England had not seen the results from my repeat CT scan the general feeling from the doctors here is that the stupid thing has decreased significantly in size. So what they are going to do is go back over to England and discuss the results with the rest of the team but certainly he can't see why if it has decreased I won't be put back on the list in the next few weeks as long as I continued to put on weight. On that front things are going well and I am at the 38kg mark which considering the way I was a few weeks back is a miracle. Seriously if there is anyone out there that doesn't believe there is a God take a look at my story. He is seriously just working miracle after miracle in my life now.

Things are now all set for the dolly walk which takes place tomorrow night and a BIG thank you has to go out to all the staff and pupils at Waringstown Primary School who had their own walk today THANK YOU SO MUCH

Char xx

Video

I will do a full blog tomorrow as it is getting late but I just wanted to get this little video up. We are going to use this video to promote the project. Hope you like it and sure let me know what you think. If you think you can use it within your church or whatever contact me and I will get a copy to you. Thanks
Char x

Chest Infection

This is Dickie, Charlenes Dad updating her Blog. She has been on IV antibiotics for over a week and unfortunately over the last few days she has been feeling things are going down so today she was readmitted to hospital again. Tonight when we were with her she was in reasonable form, her IV antibiotics have been changed and thankfully her weight hasn't dropped, still being 39.6kg.
Hopefully things will pick up quickly - we still haven't heard officially that Charlene is on the transplant list - hopefully we will have that confirmation early next week.
Thanks so much for being with her on this journey.

Good News

So today was the big day where I would find out whether or not I would be put on the waiting list for a lung transplant. So as mum and I walked into the room I was rather apprehensive as to what was going to be said particularly as I was working so hard to reach the necessary 40kg. So off I went and stepped on the scales and the final number was 39.3kg/6st 3 lb (which they were happy enough with provided it continued to increase) Apparently the average weight for my height 148cm /4ft 8.5in is 45kg-55kg.

So basically the consultant from Freeman Hospital, Newcastle said that there were a couple of things to consider.

Initially there had been a query over my liver as it was a bit enlarged. However after exploring this they were not too concerned. Phew

Next was getting the right mix of antibiotics that would work best for me afterwards if i was to receive a transplant. So the microbiologists in Newcastle have found a couple of good mixes and have just to find the BEST one that will work.

At the assessment back in August they had to check my blood type and it turns out that I am O+ so as this is the most common it will work in my favour if I was to be listed.

So at this stage I was feeling pretty ok about the situation as they had not said anything that made me feel like it wasn't going ahead. However they then proceeded to tell me that there are antibodies in my blood that would mean that 20% of organ donors would be a no go. At this point i was not sure where the whole thing was.

Then after giving me a quick summary the consultant basically told me that if I continued to progress with my weight gain they were happy enough and that I would be placed on the list by… THE END OF NEXT WEEK.

Will Keep You Updated

Tomorrow is the Day!!!

Ok so tomorrow is the big day where I will find out what the craic is with the whole transplant issue and whether or not they are going to list me for a double lung transplant. To be honest Im feeling quite mixed about the whole thing as after working so hard to get my weight up to what was required I want them to give me the go ahead.

The fundraising for the project is going really well and my new target is to reach £7000 by the end of Septemeber. Also if anyone would like to hold a fundraiser for the project please let me know as I would be only too delighted to pass on any info about the project that is required.

GMTV went well the other night oh and look out for the Sunday Life this week as I may make a wee appearance.

Portacath back in

This is Charlenes Dad, Dickie updating her Blog. Charlene is back in hospital and disappointed that she does not currently have internet access.

She went back into hospital on Tuesday for insertion of her portacath (the central line - that allows her to get her intravenous drugs easily when they are needed).

We all were a bit concerned as we didn't want her to have a GA with her chest as it obviously could have put her back weight wise with her appointment with the transplant sugeons coming up in about 10 days.

A lot of people prayed as she went down to theatres yesterday and the line went in easily under local.

Charlene was back in the ward and enjoying pizza last night. Her and her Mum had ordered so much pizza, there was even some left for me and Natalie when we visited later in the evening.

Although over all the medical staff are pleased with things, Charlene's white cell count is up a bit, so she has been started back on intravenous antibiotics again.

Her weight is over 38 kg so we are hopefully still on target for the 40 kg mark for her big appointment coming up with the transplant doctors.

The other big news is that GMTV want to interview Charelene - you can imagine the panic she is in - lol

We still need offers for coffee mornings, sponsored walks, table quizzes etc etc by many good folk to start the ball rolling well and truly with the fundraising.

Over 12,000 hits on this Blog - please please pass on about Charlenes blog site to all your friends and work colleagues so we make this all happen for her in Uganda.

Thanks, thanks, thanks for all your support and prayers.

Time For An Update

Thought it was time that I updated this thing. Since my last post things have been going really well and I have been feeling great with the main focus being on getting my weight up to the necessary 40kgs. I have also come off my IV antibiotics after 10 very long weeks and so far so good. I can't believe the "summer" is over and I have really enjoyed having everyone around home so it will be strange when they all go back to uni, school etc but hey.

On the project front things are going really well and the fundraising is fantastic (thanks to everyone that has visited my Justgiving page) Also a number of people have volunterred to hold a few coffee mornings for it so we will see how that goes. If anyone has any other fundraising ideas please do not hesitate to e-mail me on charlenebarr15@hotmail.com. Thanks again to everyone
God Bless
Char

And so the dream begins

Well have finally got around to starting this blog. It is here that I aim to keep you guys up to date with what is happening with my plans to build a school in Uganda and also my journey as I prepare for a lung transplant.

I have recently just completed a series of tests in Newcastle England to test my suitability for a double lung transplant and if everything goes according to plan I hope to be on the list within the next few months. God willing.

As many of you know I have been unwell for quite sometime now and as a result had to leave school early . It was then that I came up with the idea of building a school in Uganda. I had been out previously once before and was due to go out during this summer however couldn't due to ill health. The need of the children shocked me and I saw that they were even been deprived of something as small as an education. Something which in this country we take for granted and children complain about going to school. As a result I want to make a difference to a small number of children in Uganda by providing them with a chance to go to school. When the Love For Life team were out in Uganda this summer I sent them with strict instructions to try and find me a primary school that they thought could do with help. they viewed a couple of different schools and found Hidden Treasure Primary, it is simply one little room made of sticks and mud where all of the children are taught together. I really do feel like this is the right school to be starting my project with and I pray to God that it will be the first school of many that the Charlene Project has helped to contribute towards. Thanks to everyone for your continued support and prayers.

Charlene
p.s. below are a few pictures of what Hidden Treasure Primary school currently looks like.

The ChalkBoard used to teach the kids

Outside the School

Here are some of the kids in the school and just look at what they are expected to sit on all day