28 days later...

... And I'm finally line free! Hallelujah! I have gone through exhausted, past shattered and arrived at catatonic. I've tried to think of ways to describe it, having a head full of cotton wool making all my thought processes dull is one part. Having limbs like lead whilst trying to walk through treacle kind of gets the physical aspect. It's just all a bit blurgh. To be really rather annoying, it turns out that the original sample that set off the whole MRSA panic in the first place has been reexamined and reclassed as not MRSA but MSSA, or methicillin sensitive staph aureous... All that barrier nursing and schmozle wasn't necessary! Gah! A least the drugs do seem to have finally worked and my chest has improved and is drier than it has been for a long while, so I'm hopeful that I might actually be able to stay off the ivs for more than just a month - fingers crossed...

I have also had my first proper shower for 28 days! Yes, I know that sounds utterly disgusting and like I have not washed in all that time, but don't panic, I have! The problem with having a port is that the needle is in my left upper chest, and it's covered with a fairly large dressing. You have to try and keep this as clean and dry as possible to minimise infection risk. The port line goes all the way to just by my heart so if bacteria got into it via the access point it could go very quickly right round my blood stream, not something I want to happen. So you have to be really careful to not splash it- not easy, especially when you have long hair which needs washing. This means showering becomes a fairly comedy routine or trying to shower one side of your body whilst sponging round the dressing! The other rather ick thing is that when you take the dressing off after fourteen days there is rather a lot of dead skin and oil from your skin stuck under it, so after 28 days it is just gross, but now I am clean and fresh and can splash about in the shower as much as I like- bliss!

December disaster

Well so far I could really have done without December, and that's before I've even started thinking about Christmas. I had an awful head cold that rapidly went to my chest. So off to Papworth I went and got two weeks of Tazocin and Colomycin, annoying but necessary. It meant that I had to have a line in at the G and S ball, not really an accessory I'd chose to wear to a white tie event, but at least I got to go. The drugs didn't really fully get me better, so I was expecting to have to do another week. What I was not expecting was that a sputum sample I gave them at day seven of the drugs would come back as MRSA positive and that the doctors wanted to admit me for two weeks of three antibiotics to eradicate it.... Argh! Now MRSA in itself is not that much of danger to people with CF as it does not cause a massive decline to the lungs. However it's not something I really want lurking so I could see why the consultants wanted to be so aggressive in their treatment. What is really annoying is that by having an instance of MRSA I was immediately banned from the CF unit because of the risk of infection to the rest of the unit... So I had to have a side room on a different ward. Fortunately, the room was very nice and ensuite, sadly the air conditioning within was incredibly noisy and I could not turn it off. On the first night I was freezing and ended up with an awful headache. Also, the staff are just not the same as the CF nurses, who I've known for years, are experts in CF care and let you sleep undisturbed. They also don't quibble about heating up food that you've brought in yourself, home cooked or bought. As I was being barrier nursed the housekeepers simply woud not heat up anything for me... Apparently once something has been into a barrier nursed room it is not allowed out again, even if it's going to me nuked in a microwave! However, this was not a protocol observed by all of them, some of them would, some of them lectured me on infection control and would not! I've lost quite a bit of weight as a result which will result in the dietician yelling at me! Being barrier nursed is just frustrating!

To my further annoyance five days into the treatment the docs tell me that actually I might not have MRSA! Apparently as the lab has moved from Papwroth to Addenbrookes some communication issues have sprung up. The lab did not ring up the CF nurse to tell them of this MRSA as they are meant to, it just popped up on the computer when they checked for the results. So Sam the CF specialist nurse rang up and they confirmed it was MRSA. However, because the lab has had a few mix ups in the aftermath of the move my consultants got the consultant microbiologist to re-evaluate my results to make sure the diagnosis was correct. So possibly hurrah I don't have MRSA! Eventually the consultant got back to them saying that the initial pattern of growth for my sputum looked like MRSA but after a while of continued growing it didn't! So they are resending several of my samples to be more thoroughly tested to try and get a definitive result. So they know it's definitely staphaureous, which I have grown occasionally for years, the question is, is it methicillin resistant or not??? Apparently it is an 'unusual organism' and they need more data to decide. In the meantime I am left with all this to-ing and fro-ing as to whether all this treatment was actually needed. This regime is pretty hard core, ciprofloxicillin, fosfomycin and teicoplanin are all very strong. But I'm carrying on with it just in case, but it's only cos the lovely Dr Barker is very understanding, that she let me out after a week of incarceration and dropped the dose of fosfomycin from four doses to three. Doing a dose every six hours results in very little sleep and near hysteria! I also may not have needed to be barrier nursed at all if I don't have it, what a waste of bloody time that would have been. Darn microbiologists! I don't think they realise that the bugs are actually from people and how much stress messing up causes them...

Real life photos of a dress in action!

Yes I know I have not blogged in a month-total hat a week fail! But to be fair,I have had the head cold from hell for the past month, although it feels more like a year... I'm back on the IVs in an attempt to stop it going to my chest, which to be honest has not worked as it has and I am producing more gunge than a bad horror movie-sigh. Also, as is so typical as soon as I feel really grotty I get loads of requests for work which I have tried to keep up with, but some requests have had to be refused as I simply don't  have time when I feel this crap-its so annoying! This cycle of IVs every four to six weeks is just getting me down. I nearly missed the GandS Reunion Ball which would have been awful.  I did manage to go for some of it, but that was with a line in (not a particularly attractive look!) and doing no dancing (boo hiss!) and leaving early.  Better than nothing, but still so frustrating. I would have loved to dance with my lovely friends, but at least I got to dress up and see them.  I will try and get some photos of Mr EB and myself in our finery (white tie no less) but I didn't take my camera with us as it doesn't fit into an evening bag! Hopefully some of my friends will have got some shots of us...

Anyway back to the point of this post, I have received some lovely photos of an unusual gold bridal dress I made earlier in the year and it is so nice to see it on a person not my dress dummy. Helen actually wants me to remake the fabric of her detachable train into another garment (watch this space!) and very kindly gave me these shots when she popped over a while ago to talk about this new project. I have to say I think Helen looks amazing! She just has the style and personality to carry off this fairly unusual and dramatic dress-

I love these pictures! She just looks so happy and I like to think her dress added to her enjoyment of such an important day in her and her husbands life:-)