Monday, November 17, 2008

Overdue update...

So ok I have not blogged in ages (as several people have pointed out!) but to be fair my life for the past few months had resolved itself into a fairly boring mixture of work and clinical exhaustion, that was not really worth writing that much about. The doctors still have worked out exactly why I am so tired all the time, but I'm now on Insulin and having Iron infusions in an attempt to improve this. However, I've been having both for over a month now and have not noticed any marked improvement-marvellous...
Some of the only bright spots in the past six months or so, were the three lovely wedding dresses that I have made over this summer (sometimes working at the sewing machine whist staying in the CF Unit you can't say that's not dedication!). The first was for the lovely Rachel James a friend of my lovely mate Fran, for whom I made this rather sophisticated gown and veil. I particularly liked the long train and the swarovski crystals on the veil! But then again I love anything sparkly...

I nearly missed the lovely Kate and Colin's wedding due to another stupid bleed which landed me in hospital and on IV's. But thanks to my lovely parents ferrying me about, I managed to make the ceremony and dinner in between doses and sleeping! Kate's dress used some of the best and most complex embroidery that I've ever done, although it was rather stressful!

Finally came Polly and Will's wedding, for which I made Polly's dress and Will's waistcoat. Unfortunately I missed the actual ceremony as whilst I was on the train down to London someone threw themselves in front of the trainin front of mine causing the line to be closed and several hours of delay. I did eventually get into London for the wedding breakfast and reception. This was at the Reform Club in Pall Mall which was sooooo posh! I've not really got any good photos from this yet as I forgot my camera but am hoping to nab a few of the official ones. Polly's dress was gorgeous and the blue shrug was such a great idea.

Friday, April 04, 2008


So having had all those bleeds the Doctors recommended that I have them sorted out permanently by getting them embolized. Now I have to say I was not that keen on this, as it sounded a truly horrible experience. Basically what they do is insert a set of wires into an artery in the groin, work these around your body to the abnormal bronchial arteries that have been bleeding and plug them up with small coils, sort or angioplasty for your lungs. To be honest I was totally scared about this thinking that the coils might float off and enter my blood stream, or that I would get DVT or something ghastly, because having foreign bodies in your lungs does not sound like fun! Luckily my lovely Doctors calmed my down and the lovely Dr Appleton that did the procedure explained how safe this procedure is and that recovery was very quick, so I finally bit the bullet and agreed (that and the idea that my lungs might bleed again and not stop clinched the whole thing!)

On Wednesday I went back to Papworth and on Thursday morning I was off to the radiotherapy suite and away we went. I was quite impressed by the number of radiographers and nurses I had, 6 including Dr Appleton, made me feel much better. Getting the wires into my artery was luckily not as painful as I thought it would be, although it was a very odd feeling. The worse part was the dye they use to highlight the abnormal arteries that have been bleeding as its the same stuff they use in a CT and it makes you feel just weird and hot. Dr Appleton talked me through the whole thing and afterwards showed me some of the pictures they had taken and in a strange way they were really beautiful, the shapes of your bronchial arteries are like a trees branches in winter- how poetic! You can't really feel the wires and coils in your chest as pain, but you are aware that there is something going on which is not a pleasant sensation but is not as bad as I thought it would be! To block off about four abnormal arteries took about forty minutes, although it felt a lot longer! The most boring bit was having to stay flat for 4 hours afterwards to reduce the risk any clots happening at the wound site in the artery, but once that was done I was back up and home by Thursday evening. All in all not a fun experience that I would recommend as a holiday entertainment, but really not too awful either.

Tuesday, February 05, 2008

Well that was weird...

So yes I have been overdoing it recently and the result has been a couple of nasty bleeds from my lungs-not much fun at all. So to make sure that they have stopped bleeding and that there is not some underlying reason for these bleeds that is not due to my CF, Dr Howarth sent me for a lung CT scan. Now I've had CT's before of my sinuses, but never one that involved using a dye. I turn up not realising that I would have to have dye injected into me so had not told the CT people about my crappy veins... The day before it had a taken a couple of attempts to get a long line into my arm vein and so one elbow has the line in it and the other is a swollen, inflammed lump of soreness from where we failed to get the line in and hit tissue instead- and no one was going anywhere near that with any more needles! Luckily the wonderful CT doctor got a venflon (tiny little mini iv line) into one of the veins on my wrist so more trauma and bruises were averted.

Now, to have a lung CT you have to lie on your back with your hands above your head in the CT machine (which is rather like an enourmous ring donut) with your line connected up to a remote infusion pump that will fill you full of dye when the CT machine is ready-a really odd way to spend 20 minutes! Whilst this is going on the CT doctor is next door to avoid getting irradiated chatting to you through the speaker. The weirdest part tho has got to be when they actually inject you with the full shot of the dye. Apparently the dye is iodine based as this stands out as bright white on the X rays and its side effects are really odd. First you can feel it travel down your arm into your body, which is weird enough, then you suddenly have a massive hot flush and feel convinced that you've just been lowered into a large bath of warm water-I am not joking! I could have sworn that I had just been dropped hot water except I clearly had not! Then to finish things off you get this very strong metallic taste of tin. Now I have not idea what tin does taste like but that's just what my brain identified this taste as.... All in all a really odd way to spend a morning.

Friday, February 01, 2008

Just disgusted!

I may not be a huge David Beckham fan but now I really think the guy is a selfish, childish idiot! He was scheduled to host a Charity Gala Dinner in aid of the Cf Trust at the Dorchester and pulled out at the last minute (literally there were only two hours before the dinner started!) with no proper explanation. He was probably in a strop beacuse he was not selected for the England team. According to his agent he was ordered back to LA by his football team for fitness tests- could he not delay for one night? Its not like he can't afford the plane ticket. Also if he knew it was a possibility that he would have fitness tests at this time why did he agree to the event in the first place- its all rather too coincidental. What makes it even sadder is that Theirry Henry who organised this event asked him to be his substitue as he knew he would not be able to host the event, and he was saying how great it was that Beckham had agreed to be his sub and what a fantastic guy he is- all rather hollow now.

Apparently a freind of Beckham is quoted as saying "David is beyond gutted. All he wanted was to play and get a 100th England cap.” Well quite frankly big deal! It is not like he is never going to play football again, or that he might not get reselected and it certainly is not the end of the world as football is just a game (whatever anyone says!). Just because he does not get what he wants at this point in time he goes off in a huff back to LA leaving the CF Trust and Thierry Henry's event in the lurch. Its bad enough that he left a charity it a difficult position but letting down your freinds like that is unnacceptable. He should be ashamed!

Here's the newspapers reactions-

And yes, before anyone points out that the main reason I am annoyed is cos its The CF Trust and that he does loads of charity work, I would like to say that I would be righteously indignant which ever charity it was. When someone as fortunate as Beckham-and lets face it he has pretty much everything anyone could want and a stupid amount of money for just playing a game, lets people down like that it just shows how selfish he is and sets a really bad example to all his fans. He should realise just how lucky he is and be grateful that he is in a position to help charities and not be one of the people who need the help.