Hospitals and Holidays!

Ok so last week I was at the hospital twice, once on the Monday which I put in my last blog and once on the Wednesday. On the Wednesday I went for my appointment about my port and as I had been waiting about 10weeks for an appointment I was a bit shocked to find out it was in just under 3weeks on April 21st! I'm quite excited in a nervous sort of way! Fits in quite well though as I have a clinic appointment next Tuesday to review if the flucloxacillin has worked so they can check then if I need a few days of IV's before hand. I'm sure at the moment, the orals have really worked but I don't think I am 100% yet... still see what happens next week, in a way I would rather have some IV's and not really need them rather than need them and not have them and them cancel my port and have to wait ages to get another date! Popped up to the ward and saw the physio quickly for a chat about the gym and got told that because my lung function is now over 55% and o2 levels stay stable I don't have to make any allowences for my CF when doing my workout, just go in as been very unfit! Went on Saturday and have got a good rountine started up. Going again tomorrow, was going to go this morning but I had a bad night sleep last night so didn't wake up till really late!

Have found some dates that I should be able to have of work, John has already booked them off and found some flights that we can afford so fingers crossed I should be going to Spain on the 26th May and hoping that Marcus will have entered the world by then! Just need to speak to my team and check that 5 weeks will be long enough to fly after having my port put in. I really hope I can go as I've been looking forward to seeing Marcus since I found out that Shelly was pregnant and really looking since it was a boy and now I've felt him kicking a few weeks ago and I'm just so excited to be a big sister, I'm mean yeah I'm a big sister to Ben and Sofia but Ben is only 4 and 1/2 years younger than me and a foot taller and Sofia wasn't my sister when she was born so I never knew her as a baby, she hadn't long turned 1 when they got together, to me she will always be my sister not my stepsister but I do miss the fact I never saw her as a baby. Can't believe she will be 2 in a few weeks! Everything is going on... between now and end of May I have Mum's birthday, my mate Heather's birthday, my port, Sofia's birthday, my mates the twins Birthday Dad's (my stepdad) birthday, my mate Lyns birthday, Shelly due to have Marcus, John's birthday and hopefully going to Spain!

Anyways I'm getting pretty sleepy so I'm off to bed! x x x

Very Happy Me!!

In a bit a rush so going to try and keep this brief(ish)...





Sunday was 9 years since my liver tx, can't believe how fast the last 9 years have gone, it's crazy! Wasn't feeling too good but went to the cinema and saw 'Marley and Me' really sweet feel good movie! Next to the cinema is Virgin gym, popped in and had look round... AMAZING! More about that in a minute though!





Yesterday was my check-up at Heartlands, was really expecting to have a crap lung function and need IV's as have been feeling quite crappy for the last week... no by some miracle my lung function has increased! My FEV1 has gone from 1.79 to 1.87. Have been given some oral antibiotics (Flucloxacillin) to deal with my infection and go back in a few weeks to see if they have worked or if I need IV's but I'm hoping I can go a little longer till I get my port, meeting my surgeon tomorrow morning to have tests and sort out a date and stuff! But I was so stunned, 1.87!! A few months ago when I was feeling lots better I only blew 1.51 so was only expecting about the same, maybe all these really hard sticky bits I'm getting off my lungs are unblocking some airways! Anyway its great news, I didn't even have to see the dietitian, 60.2kg from 50.1kg at the beginning of the year kinda shows my weight isn't really a problem!





So back to the gym, I'm about to go join it in about an hour, it's £41 a month, off peak!! So why am I joining the most expensive gym in town?

1. It's beautiful, yes I'm a sucker for things that look good! But as well as beautiful it's very very clean, I couldn't go if it wasn't clean, I don't want to exercise in someones sweat!



2. The power plates. As far as I know it's the only one in town with power plates. As I do acapella for my physio, which basically sends vibrations into my lungs to shake the mucus out, standing on a vibrating platform for 10min's should really help, plus I have heard it is good for joint pain which I have in both knees now



3. The exercise bikes have TV screens in them, this will be a good... I don't really want to say motivator but I can't really think of another word! Basically I hate the bike and I get bored very quickly but once in hospital I was reading whilst on the bike and I did 30min's before I knew it so I think watching TV while on the bike will have the same effect.



4. The distance, I walked there on Sunday and it's not as far as I thought, possibly a bit closer than the council gym. And the bridge at the end of my road has nearly been rebuilt which is a direct route (pretty much as the crow flies) so will be even easier to get to.



5. The pool, the pool is pretty quiet and the council pool is mainly packed as it's the main swimming pool for the town and post transplant I have been twice and picked up bad chest infections just after twice so I won't go there anymore. I still use quiet pools whenever I can and don't seem to pick up anything!



6. I get a free massage from their masseuse when I join!


7. I don't have to sign a minimum contact, I can cancel after just one month if I chose.

I may still get exercise on prescription from my doctors which will make it cheaper but even if not I would rather pay a little extra to get the results I want than pay for somewhere I won't be motivated to go to! (and if I don't go I can just cancel and try somewhere else!)

The stupid and the expected!

I want to join my local gym and as my flatmate is a member I asked her to get me a price for the gym-only membership when she was there. She asked at reception and was told she would have to ring. Which I think is quite stupid but hey! Turns out you need to speak to someone else, not the receptionist, someone from sales I think. So I googled them and got a number which I couldn't get through on! Asked my flatmate if she could ask for the proper number and they have given her the same one! GRRR! There is another gym nearby but the opening hours are not as good. All the others are quite a walk away and I don't drive. Might go in and ask to speak to the person I need, if they say I need to ring, get my mobile out and do it there and then!

It's bonus vouchers time at work, to get them you need to firstly get a good staff review, secondly they look at your sickness record, 0-3days in the last year gets you 100% of your weeks wages, 3-5days gets 75% and 5-7days gets 50%. I had 56days off meaning I will get either £7.50 or £12.50, same as last year and the year before, oh and the year before!

Haven't felt too great today, quite tight and breathless. Have been feeling quite tired all week, thought it might have been cus I over did it last week but after today think it might be an infection creeping in :-( Have got clinic on Monday so going to see what happens over the weekend, keeping my fingers crossed!

Back from Spain and major congrats to Sally-Anne for her new lungs!!

Got back from Spain yesterday, really didn't want to come back but here I am! I went on Monday and arrived late pretty much went straight to bed! Came back yesterday lunch to an empty house, John is in Gran Canaria until Saturday and it might sound a little sad but I just feel quite lost with out him!

Anyway whilst in Spain I checked my facebook and saw that Sally-Anne has had her transplant on St. Patricks Day! Haven't spoke to her but I have heard she is doing well! Have got her a card to send. Also got a message last night on facebook from a friend AJ, who had a lung transplant not too long ago but had been back in hospital with rejection, telling me that he is back home, feeling like he has been ran over by a truck but is OK.

So with Sally-Anne having had her transplant in the UK I am now doing the walk for the CF trust. Have got a lot to sort out in a short time although there is a small chance I will have to cancel/postpone the walk as I have got my appointment to see the surgeon to have my port put in on the 1st April so I may be having IVs prior to it been put in or recovering after. My appointment is at 8.40am and it can take up to 2hours to get to the hospital on public transport so not really looking forward to it! Anyway I am in clinic the day before but I'm gonna ring up and see if I can get an appointment on the 1st even if I have to hang around for a few hours still better than going over 2 days in a row! I will be quite curious to see what's happening with my lung function. When I had IVs in Jan my FEV1 was 1.76 mid IV it was 1.81 then at the end it was down 1.49 even though I felt really good. Was put on a new neb and it went back up to 1.83 so I was discharged and my follow up was down to 1.79 but I was feeling amazing and had put on loads of weight so they weren't too bothered. I'm not completely sure what the % is because after my IVs in Oct my FEV1 was 1.9 and that was meant to be 51% but for my 1.79 it says its 56% so I need to question it find out the proper one! It kinda feels weird to feel so well with only a bit over 1/2 of the lung capacity I should have, it really makes me wonder how amazing it must be to not have CF! Anyway I think I might be losing a little weight as I'm struggling to eat properly at the moment with feeling sick! Hoping it doesn't last long as I drop weight very quickly when I'm not eating properly (nearly 4kg in a few days after Xmas)

Have been sleeping a lot better, still not perfect but loads better... and talking about sleeping I think that my bed is calling me!!

Night Night!

Sleeplessness!

OK so my sleeping has been getting me down over the last few days... I have, for quite a while now, been unable to sleep before 4/5am, some days this can be 8am, and I tend to wake up between 2 and 3pm. Then Monday night I just could not get to sleep... I wasn't at all tired, at 7.30am I was singing (well sounding like a cat been tortured!) so anyway the later it got the more I realised that I wasn't getting any sleep! So all day yesterday I was shattered but refused to have a nap! When I got in from work I had something to eat and about 10.15pm I took some herbal sleeping aids and about an hour later I dropped off... till just after 1am, by 3am I was really frustrated and had some toast and after the toast I just dropped back off again till 10.45am! Today I feel really refreshed so I'm going to try these herbal tablets again and make sure I eat something before I go to bed cause I think I was only awake cause I was hungry. Hopefully they will help sort out my sleeping to something resembling normal!

Another thing is that I have decided that 60mins just isn't enough to do the walk in as that gives me just 12mins which I would have to jog, now I know I want to push myself but there is pushing myself and killing myself! Have now decided between 75-90mins is slightly more sensable, but still going to be a challenge!

Spider and George

Some pics of Spider and George from last summer! Spider is at the top and George is at the bottom

Jack.

Some pics of Jack when we first got him about a year ago, he is so huge now though! Will try and get some recent pics soon!