Just a very quick blog to let people know whats going on. Chris was transferred to ICU on Thursday as they felt he needed one to one care and possibly more help with his breathing than the ward could provide. Since then he’s been on c-pap with oxygen at 100%, once or twice they’ve tried to take him off it but he’s got into a bit of difficulty and has had to be put back on. They suspect that he has a virus rather than a bacterial infection which makes it much more diffucult to treat, loads of rest is the best treatment so his body can fight the infection, unfortunately one can’t just click one’s fingers and sleep when feeling very poorly and anxious. Last night there was a big improvement and he was able to cope with just a normal oxygen mask for a couple of hours and even ate some tea, however he had a rough night so was put back on c-pap at 100% and remains on it now. Because he had very little rest last night I’m afraid we’re back to square one today and they’ve requested he dosen’t have visitors until this evening, including me and John. Things can change from one minute to the next and I wont be blogging very often as I’m staying in a bungalow at the hospital but I’ll try to let you know through Andy or Lorraine.

Whatever your faith please say a prayer for his recovery.

Chris say’s he feels a bit better today, which is good. However his blood gases have dropped again and sats are lower so he’s on oxygen continually for the time being, he’s having two units of blood tonight presumably because he’s anaemic, I don’t know for sure as there were no doctors around for me to ask. When I was leaving tonight I saw the transplant sister and voiced my concern about his breathing, she said he’s fighting a major infection, I asked how do you know its infection rather than rejection, she said rejection usually looks like cloudy patches on the xray, ‘did you see his xray’ she said. I had and agreed with her that it looked very like his xrays before transplant, so hopefully it is just infection which should show signs of improvement as the iv’s kick in. They’re not going to do a bronch until he’s a bit better and stronger.

Despite being a bit under the weather him and Mike managed to wind me up tonight, it was all to do with CHEESE, there was a question in the latest edition of ‘Nuts’

How many cheeses does the U.K. produce.?

I was allowed as many guesses as I wanted but got fed up after 20 and pleaded for the answer, as by now it was imperative that I had this information. Mike ripped the answer out of the page and said because I was impatient I would now never know how many cheeses were produced by the U.K. So if any avid readers of Nuts read this will you please trawl through your copy and put me out of my misery….Thank You.

And Goodnight.

Monday morning Chris seemed a bit better but as the day wore on he became lethargic and complained of a stiff neck and flu like symptoms, so he rang Wythenshawe. He explained that he hadn’t been to clinic for about 4-5 weeks as his last appointment was cancelled when they’d taken him in to have his wires sorted, he’d ended up coming back home because he had a slight cold and they didn’t want to risk a general, but no further appointment for clinic was made at that time. Because of the wires being in a sticky out position he hasn’t been able to do his blows properly, so he didn’t know whether the low reading he got on Monday was a true one or not.

On Tuesday morning it was a mission to get him to Manchester, he was obviously a very unwell bod, even with his parka on with the hood up and the heater blasting out on full he was shivering so much that his back sort of went into spasm. We had to pull off the motorway for him to be sick and that made him colder, so he shivered more.

He was admitted as he has a nasty chest infection blood pressure is low he’s dehydrated and sats are down, he’s on oxygen as his blood gases aren’t brilliant and his blows are down to 54 from about 90. Because they don’t know what the infection is until all results are back he’s on iv’s for psuedo, aspergillis and cmv virus. Once the results are back they’ll be able to target the infection and hopefully we’ll see an improvement over the next 48 hours. The doc’s have tried to reassure him its not unusual to get an infection in the first twelve months after transplant, but he’s extremely anxious at the moment because of what happened with our James, I can’t imagine how hard that must be for him to deal with.

He’s never allowed his friends to visit him when in hospital and poorly, they usually have to wait until he’s a bit better but last night his best mate insisted on going up which was a good move as he had him laughing his head off within minutes of arriving. I was told I could go and I should send his mates in future because I’m no good at it any more, to which I replied, I’ve been doing it for 24 years and the novelty has worn off now, cheeky git.

More Sun

I worship the sun, it’s a god and I hold it in the highest regard, great big yellow shiny ball in the sky pleeeeeeez stay out forever.

I increased everything at the gym this morning, went for more reps on the weight things rather than upping the weight and jogged faster rather than longer on the treadmill, no idea if that’s the way to go so must check it out with them that know. I’m applying for a job down there, its in the bar in the restaurant, the good bit is, if you work there you get your membership free and also get to nominate someone else for free membership, now at over £600 a year per person that’s a dam good perk…so if I get it Chris can join me and Mike in our manic quest to be fitter than is humanly possible. I’m rather hoping for one on reception to come up, not that I’m a snob and the bar is below me but I really shouldn’t be placed too close to voddy for too long and anyway they get a much snazzier uniform on reception.

We have a very exhausted Chris here today who’s running a temp and totally whacked out. After returning from his holiday on Saturday he only paused for half an hour, then went shopping, then paused for half an hour, then went clubbing, then was brought home by car by a bouncer, who must have been a very very nice man to do such a deed. He’d had a dramatic hypo in the club and no hypo-stop gel with him, which is the only thing that works quickly enough for Chris, after pouring much coke down his neck which just kept him from fitting he decided he should head home. So after only one pint and a whiff of a dance, like Cinderella he was whisked away, fortunately after some gel and lucozade his sugar’s rose and he went to bed Mike said. The after effects are an exhausted son with a temp, but I wont comment about doing too much, I wont even incline my head or raise my eyebrows because I’ve learned to shut up now, I just come on here and write it, works a treat.

Still can’t think of that song…arghhhhhhh.

Sun Swim Song Son

Hasn’t the weather been absolutely brilliant today eh!!

I did 26 lengths non stop this morning at 9am…life’s good.

Something is driving me insane though, I can’t remember the name of a song, in the video the singer (not unlike the one on the Halifax advert) is walking through a train carriage, then he’s on a platform and there’s lots of people either walking along or on the escalator, I’ve asked everyone I know and nobody can remember it……help.

Chris got back, stayed half an hour and went shopping not seen him since, judging by the 93 photo’s he took he had a brill time and walked loads..all uphill naturally because Wales is.

The title of this blog looks like it should be a tongue twister but its not, I said it fast 10 times and it was still right.....fascinating!

A lot of nothing

Time for a blog methinks, nothing of note has happened here apart from our Mike’s results which are, he doesn’t have cf, its asthma and an allergy to dust, so I now have to clean his room, It’ll be a long job and protective clothing will be a must for health and safety reasons in fact I may be wise to have a safety rope attached as well just to be sure I have a means of escape.

The garage saga goes on, the first bit went quick but hubby found a crack in the only wall that had been left standing and which they decided WAS safe to build off. So progress since then has been snail like while they have a million looks and discuss how best to proceed. This is how its looked for 2 weeks, the cat’s are having a ball diving in and out of the holes where the windows and door should be, glad it makes someone happy, actually I couldn’t really care less how long it takes to rebuild it, things like that don’t bother me in the least, I just don’t care but the men are impatient and pace up and down and go in and out sighing and shaking their heads because it’s a den in their eyes and that’s another blog for another time.



I am still loving the gym and am progressing marvellously, you have to say that to yourself loads, its called positive thinking or maybe brainwashing. I can do 8 minutes on the treadmill of intermittent training which is alternating 2 mins on very fast walk (6.0) and 2 mins on a bit of a jog (7.2) , I can also stay on the ball while lifting very very small dumbbells and I now don’t feel faint after I’ve done the Versa Climber, which is the most wicked machine in the world. I also think I need to up the weights on the other machines now as its become easy. Pat on the back for me and a gold star because I never had this much commitment before.

Work on my secret garden has been halted for now but I have found someone with a digger who’s dad is mates with the farmer so bringing it through the back field wont be a problem he says. It was actually Chris who found him its one of his mates who was present at a wee party that took place at our house while we were away in York. As well as digging up muck and making the ground flat so I have a nice canvas to work on in my secret garden this chap is doing us a patio outside the back door apparently, it was arranged by Chris on the night of the party and all we have to do is pay the £1,060, how thoughtful is my son eh!!!!

Mike came home from work and wanted me to do a number 3 all over his head as he’s fed up with his hair, I’ve never clippered hair before and tried to get out of it, but remembering the title of my blog ‘Try it and see’ I did it and it looks brill. You can do this forever now he said, saves me a fiver a time, sling it on the housekeeping why don’t ya I said but he just laughed…loudly.

Chris is back tomorrow, I've missed the little git, we were honoured with a phone call last night and it sounds like he's having a brilliant time, done loads of walking and hardly seen the local......yeah right.

Good

Mike doesn't have cf, this is good news.

Overstretched

Yesterday at the “stretch” class, deemed essential if you’re intending to run a race, she said, now while sitting on your left leg bring your right leg across your knee, stretch your right arm up, then down over your shoulder now bring your left arm round your back clasp your right hand and PUSH your right forearm towards your back. I’m sure that was the one that’s rendered me incapable of doing any slight movement today without a kind of Uhhhh or Ahhh, and my backs not happy the bottom of it feels like I have a toothache in there.

Moan over, no sympathy expected as its self inflicted and all me own fault.

Anyway I thought a swim might be a good idea this morning as the thinking today is keep it moving, don’t lie up or you’ll stiffen…more. I went to dig out the cozzi, its been about 2 years since I had any swimming gear on and I wasn’t happy with what the lying toad of a mirror had to say. So! off to bloody shops to purchase new cozzi, I was going swimming no matter what, eventually I found a suitable thing in Next, they call it a tankini I think and it has an inbuilt wonderbra to make us with nowt feel in proportion.

2nd moan over, again no sympathy expected as losing weight is a side effect of going to the gym again self inflicted.

The boys are still 10 steps ahead of me in the winding up game, I did my ironing yesterday while being drawn on, clipped round the head with a newspaper and all kinds of bits and pieces being stuffed into the arms legs and pockets of items being ironed, I tried to keep cool but lost it in a major strop when my best pink jumper was dragged off the ironing board and flung on the floor for the third time.

I don’t see an awful lot of Chris nowdays but I was parked at our local shops today when a fist hit my bonnet, yep it was he, walking round, as I thought to speak to me he opened the door wide and shouted “I’ve been shopping” I started to ask when he might be appearing home but he’d already gone leaving the door wide open…bugger you, starve then.

3rd moan over, no sympathy here either, as they say its my own fault “ I borned em”

Deep Blog

Is it wrong not to want to watch tv programs such as The News or Comic Relief? I haven’t sat down to watch television for a very long time, I did tonight and I’m sorry but I won’t be doing it again any time soon. I know there’s lots of misery in the world and I wish there wasn’t, but for me and this is a totally personal point of view, for me to watch it all is destructive, I care and it makes me miserable to see it, a miserable me does nothing for my family or friends, so I don’t watch any more Is that selfish?
I can’t solve the problems of the world, I can be an ostrich and remain a positive person who will always see the good in people before I notice any faults they might have. I can make a difference in my small world, I know I can, so that’s what I concentrate on.

Does that make me a selfish person?

One Nil to them

I had to blog tonight because its all mish mashin around in my head, the boys are winding me up loads, I mean loads, they seem to have got together and decided it was time I entered a secure place and be spoon fed whilst in a straight jacket. Our Mike drove us to the gym last night, I say us as his mate was also on board, when we left he headed in a different direction and pulled into a place well known as dodgy, now I’m not saying anything else about this building other than beyond the car park its very very secure. He pulled in, turned to his mate in the back and said, right get the window down and for god’s sake be quick this time, he then said to me ‘mother say nothing about what you see..right , its whats known as a..by then I was rigid and speechless and white, they must have felt sorry for me at this point and burst out laughing, I was just turning the car round, don’t panic…it was too late, I already had.

Chris has been the most irritating little toe rag on the planet today, he’s bored he has loads of energy and it has to go somewhere, I don’t ever remember him being so bloody annoying even before he got really poorly, he say’s he’s never actually felt this good before so couldnt be bothered, when I reach for my purse to pay for something its anyone's guess what my hand will end up in, he was somewhere today in Next but I couldnt find him, just heard a 'mum' every now and then. The cats downright refuse to eat anything labelled cat food as he opens a tin of tuna every morning and invites all three of them to join him. My nerves are frazzled and I know there’s more lined up for tomorrow as he bought me a pressy today, it was James Morrisons new album ‘Undiscovered’ when he handed it to me he said be warned mother, you owe me now, for the rest of the week I can terrorise you.

I used to be one step ahead, I’m going to have to do something to prove I still am. Watch this space!!!

Overdoin it

I’ve come to the conclusion that I’m an a person with an addictive personality, I can’t do things in moderation, I do it, I like it, then I love it and have to do it loads. Even after being warned by many people that I shouldn’t overdo it I’m now at the gym every single day, I missed Sunday I think and it mithered the life out of me. I’m hooked, cant wait to get my feet on the treadmill with my music banging out, in fact I’m not truly happy until the sweats rolling off me and I can’t steady my legs. It’s the same as when I decided to read something other than the usual historical romance drivel that I always stick to, If I find myself sitting nowdays you can guarantee I’ll have a book in my hand. I finished one on Sunday night…a weird one but I quite enjoyed it, then got a text from a friend on Monday who mentioned she was reading a bizarre one, well I had to have it didn’t I and seeing as though I was only 200 yards away from the ‘try before you buy’ bookshop and had a £20 voucher in my bag I went and got it.

I’m so addicted to everything I even got my vision finished in between.. Nice isn’t it. Your not allowed to see inside though because its secret.

To be honest I’ve decided I need a bobcat, or rather I quite fancy operating one so I’m convincing the men its not a problem that we can’t get it through the gate, I’ll go have a word with the farmer who owns the back field, I’m sure he’ll let me drive it through there and we can lift one of the fence panels out and drive it in…voilà !!!

Sunday

My reluctance to get out of bed this morning told me I’d done too much yesterday, but by eck I enjoyed it. I moved all the wood 80% of which was buried in deep slimey mud, got all my lovely chunks of sandstone together in a pile for rockery feature in secret garden, also rolled many slabs of very nice erm…..stone thingies which I’m sure will come in handy for something, no snails were harmed in all of this as I picked them off one by one and put them safely in a new home where they would reside in comfort until I planted my organic veg , when they could lesuirely come out and scoff the lot. Looking at it this morning it dosen’t appear to look much different but I know I grafted and that’s fine. I also did the gym as I have every day now for 12 days, then collapsed into bed mega early and when I woke this morning my body said ‘NO’, so I stayed there.

Today would have been slow, John got called into work as they had major problems, Mike had a lads night last night so I knew he wouldn’t surface until late afternoon, what I didn’t bargain for was a Chris who came home early last night so would be up and full of the joys in a how much can I annoy me mam mode. So I got him a Mr men cake kit to keep him amused, however he managed to balls it up by adding the icing mix into the cake mix so they oozed all over the baking tray, he thought it was brill. As he’s intending to move out as soon as possible he then wanted a cookery lesson and insisted on making the Yorkshire puds, stuffing and gravy, it was hard work but I look on it as an investment in his eventual flight from the nest which I’m sure will happen very soon as he's applied for a job..fingers crossed.

The vision

Stroling down the garden today, as you do once the weather has become a bit more clement I spotted a patch of ground and had a vision. I’ve always had this dream to create a secret garden, somewhere very quiet and private where you can unwind, maybe take a book or just enjoy the nature going on around you. Some moving water might be nice, just a small thing though no thrashing rapid type features, in fact nothing in this vision is big or noisy, its peaceful and tranquil. I’m there now in fact and I can even smell the scent from the flowers I’ve planted to attract wildlife and feel the warmth of the sun on my face.

Hmmmm…back to reality now, it looks like this at the moment, so first of all a big clear up and a skip on the drive, I’m very excited as I love working in the garden especially when I have a project., however I won’t rabbit on about it too much on here as I’m sure there’ll be a gardening forum where many anoraks get together and be passionate about muck and stuff.



Chris may or may not give me a hand, it all depends how busy he is, though his creative side is more than a little interested. He’s off again on the 20th of March for a week this time I think, in a cottage at Lake Vernwy to do some serious fishing in between visits to the local.

Him & Me

York’s nice and The Dales are if you know where you are.

Been travelling this weekend but with a slight difference, had hubby on board too as it was his birthday and I couldn’t very well sod off without him now could I. We made our escape around 1pm on Saturday headed North and ended up in York, that was the smooth bit. They say opposites attract, well it doesn’t come much more opposite that me and John :

He keeps to the speed limit-- I dont

He’d pay £85 for posh hotel-- I'd do B&B at the Edinburgh Arms

He’d pay £45 for a meal in posh hotel -- I'd eat practically anywhere

He’d watch the rugby in the lounge -- I wouldnt, but did

He’d watch the footy after meal -- I wouldnt, but did

He’d drive for 4hrs without a break -- I wouldn’t, but did

After leaving York Sunday morning we headed for The Yorkshire Dales and spent 3 hours being lost, we must have passed the same hill at Yockenthwaite-on The Wold (doing about 27½ mph) 20 times and each time it was MY fault because I had the dam map book. There were some lovely places to stop for coffee and cake but they were driven past at a now terrifying speed of 37½ mph, by now my tongue had swollen to twice its size due to great thirst so He pulled into the services on the M6……I was grateful so I never moaned that the carrot and corriander soup was freezin and the croutons were soggy.

Deciding not to spend another night somewhere strange we headed home earlier than planned to find a party had taken place in our absence.

That’s all for now!!!

Read the book and seen the film.

Hmmm…. emotions back to the forefront here today as we got to see the filming channel 4 had done. Considering they’d filmed for 21 days pretty much every day at some point, it only came out to about 15-20 minutes. Having said that we all thought it was pretty well put together and covered the main details that they wanted to convey to the public, which was transplant and organ donation.

The subject of the film was multi organ donation, and they wanted to follow all organs, eyes, tissue etc..donated from one person. When you see it for real on film its mindblowing, this is a real person/ family deciding to give many people the chance of a new life/ sight/ skin/ etc….how brave of that family to do that at a time when they must be so distraught.

We also learned today that there were problems in theatre with Chris, I don’t imagine that’s unusual but its unnereving to see it after the event and in a way its good that we didn’t know at the time.

We’ve all had a natter and its been interesting to hear all our points of view, for instance I didn’t know that Chris had predicted how John (hubby) me and Mike (brother) would feel, he was spot on though, on the night he was waiting to hear if the op was going ahead he said that I would probably be upset, his dad would be quiet and his brother would be making us all laugh.

The program isn’t going to be on tv until December, they want to film 20 transplants and put it out to coinside with the 40th anniversary of the first transplant and they did say that Chris’s was a great one to film as he was so positive.

I still get up every morning and think its unreal.

To the family/donor that gave our Chris a new life, thank you so much for your decision to donate.

Funny walk

I had my coffee delivered to my bed yesterday morning by a wide awake son. After spending half of Monday catching up due to his weekend away Chris was up at the crack of dawn and raring to go, as I was showing no signs of wanting to move myself he brought me coffee, fed the cats and got his neb on. This is a major turn around as I can’t remember a time when he’d been up before me and nobody ever feeds the moggies unless I’m away from home. I’d been to the gym again the night before and everything felt like a lead weight so was tempted to turn over again but he hollered up the stairs GET UP you lazy git.. so I did. Couldn’t get in the shower though as he beat me to that as well.

Chris got a phone call from Wythenshawe around midday to tell him to come in before 4pm, this was to sort out the wires in his chest. Normally they don’t cause a problem but the one’s on the front of his chest at the bottom of his rib cage had decided to move around and were causing him some discomfort when coughing or sneezing, he’s also unable to do his blows properly and that’s an important part of monitoring his progress. Anyway he told me I couldn’t go with him (love it) and off he went, but returned a couple of hours later as they said they weren’t happy to give him a general because he had a slight cold. This turned out to be a good move because this morning he’s not too good and the cold seems to have got worse so he’s gone back to bed.

I’ve been to the gym again this morning, note I’m now calling it the gym not the torture chamber, if I ever start referring to it as ‘the club’ please give me a reminder to get real. I’m a bit bothered about one of the floor exercises I’m supposed to do for balance and couldn’t bring myself to do it this morning. I was telling our Mike about it last night and he was horrified, said he’d never seen anyone else doing it down there before and I better not let it be known I’m his mother if I carry on doing it. Do you ever remember how Basil Fawlty used to do the stoooopid german type walk, well its that one, I have to go from one end of the gym to the other sort of lunging, naturally because my balance is so rubbish I’m all over the place anyway. Mike reckons they’ve thought to themselves lets get this one on that Basil walk and they’re all p*****g themselves laughing in the staff room…..so I didn’t do it this morning. I also clocked some poor guy in the ear when I rolled off me ball. All good stuff, its really quite addictive. Am I boring you?

The bad, the good and erm.....

Well I finally got my rear into gear and went to the torture chamber tonight. I'd love to say I feel invigorated and I might...in a few days when everything stops trembling. As the one and only time I'd put in an appearance was at the induction a few weeks ago, naturally I had forgotten which particular intrument of torture does what to which bit and how to set the thing up. Not wanting to look a complete wally I pretended I knew exactly what I was doing, stuck my earphones in and did the treadmill and bike hoping that some official looking slave driver would show up before I finished. One did and he was very patient bless him. I ended up doing only three quarters of my program because I forgot to look at the back of the sheet which was good really because had I seen it and tried to do it all I'm pretty sure I would now be on ward 34

And them balls, what are they all about eh!! balance is not my thing, I cant do it, I CANNOT DO IT. Try as I might I always end up slithering to the floor. I'll just swim tomorrow I'm good at that.

*********

Number whatever it is has been knocked off the list thanks to my neice going on holiday for a week and throwing her car keys in my direction.

I've had this little toy to play with for a week only downside is you cant fit shopping bags anywhere so they're all looking a bit thin in my house at the moment.

*********

Quick update on Chris, he had his peg removed on Thursday as his weight has continued to climb despite becoming vegetarian a week ago, in fact he's probably eaten better since becoming veggie than he did before. The peg going was a big landmark for him as he's always hated it with a vengence. He's away this weekend with some friends in a log cabin in Snowdonia and out of range I presume by the lack of text....all good.

Phew!!!

Well I finally got Chris's transplant blog finished and posted on the cf forum, its been a mission finding all the bits and pieces I scribbled on but its done. Still not sure whether it was appropriate to put on the forum but Chris and I felt it was a positive and the feedback from the people I asked to preview it was good so I did it. In a way its a closeure for me, its been a rollacoaster ride for a few years now and the forum has been a godsend but I feel its time to move on. Thank you to everyone who helped me out since I joined in 2004, its been a very special time in my life.

I'll be keeping me blog going and no doubt will post a game now and then on the forum.

Take care everyone.
Sue xxx

OMG How easy was that!!

Ignore this blog, I stumbled across something I'd been wondering about while I was rounding up Chris's blog.

Here's a little chocolate number I threw together while standing on my head, hands tied behind my back and blindfolded. Thats number 8 off the list.....hah!

Drive time

My feet have become itchy again so I'm gone till Sunday, unless they have internet access in Whitley Bay. Take care all, have a good weekend.