Sunday, March 27, 2011


At last I've been released from Papworth! The port went in successfully and after a week in hospital to do some amminophiline and extra fluids to try and clear my chest out as much as possible, they agreed I could finish the second week at home. I am totally knackered as I am on fosfomycin and tazocin, and unfortunately fosfomycin is four times a day or every six hours, and tazocin is three or every eight hours... Now even stretching the numbers a bit so i can do both drugs on some doses, I end up doing a minimum four doses a day which takes up loads of time! It also means I get a maximum amount of six hours sleep in one go. I usually get a minimum of nine, so I do feel rather like I've been sat on by an elephant! However on the olus side I am feeling so much better compared to the usual drugs i take. So hooray for the port as I could not take the fosfomycin in a long line as it buggers my small veins up. I am still fairly bruised and sore, but hopefully this will all have been worth it and I will actually feel better for a decent length of time. Fingers crossed!

Saturday, March 12, 2011

Port Update

Well yesterday can only be described as a disaster. For some reason the consultant could not get the stupid guide wire into my jugular vein far enough to use as a guide for the port line. Even after several attempts the wire would only go in about 10cm before it would not go any further. This is no where near far enough which means I've been left with a neck that looks like I've been savaged and still no access.... I am seriously sore and seriously pissed off. I was not looking forward to this procedure at all and now it's all gone wrong and I am left in discomfort but with nothing to show for it.   Being poked and prodded like that is seriously uncomfortable even with local anaesthetic and knowing that I'll probably have to try again next week is just not appealing, in fact I am more than a little scared that I'll have to try again. The surgeon had never had this happen to him before and neither had my CF consultant or the specialist nurse, so clearly I am just weird and my body is trying to piss me off again.

I had a contrast CT after the disastrous attempt at insertion, and on Monday will hopefully find out the reason why the guide wire would not thread and whether they can try a different vessel or do something different that will work.  In the mean time, I am still hanging on waiting to get access so I can have some decent drugs and actually feel better, cos I am still feeling pretty rubbish lungwise and need some IVs. My Cf consultant did suggest trying to get a line in me, but quite frankly anyone who wanted to try anything with a needle anywhere near me yesterday was going to get beaten up! Not at all impressed by the whole thing really and don't know if I can bear to try again...