Lucky Number 7!!

LUCKY NUMBER 7??

As arranged Judith turned up to take me over to Llandough hospital.  I was nearly ready apart from my socks and shoes.  I haven’t worn socks for ages until my mum bought me a sock strap sort of thing that u place your sock over it then slide your foot in.  Pull the two long canvas straps and hey presto it pulls your socks on, well most of the time it does.  Occasionally it goes on strike and only pulls them half on meaning you have to start again grrr!!  Shoes these days come in the form of slip ons as there is no way I can bend down that far anymore let alone play around at getting laces done.  I can just imagine it I’d get half way through and collapse due to lack of oxygen as all the organs in body will be crammed in tight leaving no room for my lungs to work.

Right then, after sorting out my notes or finding them to be more honest, they knew I was going yet when I asked for my notes etc they all looked at me as if to say where are you going??  Anyway off we go, freedom at last and I was thinking really seriously of going on the run as Heath Towers disappeared in the distance but then remembered I’d left my laptop there. Damn it I will have to go back for that!!!  We arrived in Llandough with plenty of time to spare after popping into Tesco’s along the way of course.  I had not eaten dinner before I left as I would have had to rush it down and besides I was not overly interested and inspired by Dry Turkey dinner and I think it was Chicken & Veg pie which as a rule is 80 percent pastry 15 percent and 5 percent Chicken.  When I say Chicken I mean chicken tasting bits of something it could be anything at all I guess.  Okay whilst munching away on my gorgeous bar-b-que chicken drumsticks and spicy jumbo sausages we arrived at the hospital.  Judith managed to wolf her food down in record time as it’s a bit hard to eat sushi when you’re driving so she had to wait.  

In we went and as usual were told to go and have a lung function test before I get to see the doc.  As usual they tried there best to kill me.  Having me coughing and puffing and panting away, then there’s the pin prick in the earlobe for blood gases and back to more waiting for the results to be formatted.  I had a look at them when we were heading back to the waiting room for the doc and to be honest they were not a pretty picture at all.  They included the last 5 or 6 test results too for comparison and there seemed to be quite a remarkable drop in all areas compared to the rest.  I know I felt fairly well last time I came in to see him.  It must have been about 3 months ago or so and the results compared to them are at least halved if not more in some tests.  The only thing I like about this particular clinic is that all the patients notes are placed in full view on a table outside the doctors room so you can see where you are in the queue and thank fully I was only third and there was another registrar helping out too so I shouldn’t be long at all.  Finally my notes which are staggeringly large and in fact are split into two huge folders and the second one won’t be long before that’s full too disappeared into the room.  I heard the dulcet call and off we went.  His face told it all to be honest.  He just looked dumbfounded.  He said “I guess you’re not doing too well at the moment then”?  ummmmm you could say that.  I went on to explain all that’s been happing of late with my chest and after asking me a couple of things it was off into the side room to strip off for him to listen to my wheezy  chest.  There was nothing new there he has heard it all before.  Okay then what can be done??  Well as per usual he seems to edging towards having another Lung Biopsy done which will mean another 4 weeks or so in hospital and then the slow recovery afterwards and to be honest I still haven’t got over the last one and that was about 15 months or so ago I think.  It involves a tube thing being inserted through your rib cage then into the lung, robbing a bit of it and then sew up the hole and will need to be done on both sides.  he knows my thoughts on this, that unless he can give me some assurance that they will be able to get to the correct diagnosis and of a possible treatment for it by doing so then I just don’t feel happy having it done.  He seems to think it might be something called Bronchialitis which is narrowing of the airways in your lungs or more likely it is GVHD there’s causing the problems.  The only conclusive way to tell if it is GVHD is to take the lung biopsy sadly and the result would be a definitive yes or no.  So in some ways I am in a bit of a tricky situation and to be honest I am not sure what to do at all.  Do I take my chances and go ahead with the Biopsy knowing what it entails.  At least this way I will have for the first time an accurate diagnosis as like the heading says I have had about 6 different diagnosis’ in the past and all from him.  Or do I try and sort it out with a change in medication that would be able to clear up the Bronchialitis if it is indeed that.  I think and have done for some time, that it is probably GVHD causing at least some of the problems all along as since the very first time I contracted Pseudomonas I have never recovered 100 percent regardless of what anti biotic treatments etc they have given me.  But on the other hand if it is GVHD then surely the imuno suppressants and steroid approach they have taken for the skin GVHD would have had some effect at least yet I am getting worse.  Well he decided that another more specialised lung function procedure would be a good idea and managed to get me straight away.  It just involves them pumping different gases etc into your lungs and see what absorption rates etc are like.  Then there’s lots of huffing and puffing and coughing and spluttering, all good fun for them to watch but not much for me.  We took the results back and his opinion was that it does look like its Bronchialitis but still doesn’t rule out GVHD.  He has recommended a change in both my nebuliser and my inhalers too.  He wants to see me in a couple of months then or earlier if need be.  Off back to prison, oops I mean Heath Towers.  I know how prisoners feel on day release now it is hard to go back in once you’ve been given a little freedom.  It was nice to get some fresh air to be honest because there isn’t any in here as you are not allowed to open the windows and as you know the door is permanently shut so I am breathing in the same old stale air and bugs and germs day in and day out.  This thing about not opening the windows has been going on for years.  It’s something to do with the rendering or rather some mould or something that is growing on it is not very good for you and there is a chance that some of these particles might get in and cause problems.  Well correct me if I am wrong but did I not pick up Pseudomonas and probably a lot of my infections whilst being in here with the windows shut and the door too and eating the same old rubbish but lets not go down that road shall we..

Okay then back now and with a few things to think about as well.  I need to have a chat with Merlin too as his opinion is vital in all this and unfortunately he is not back till next week.  There may be a technical problem that would mean I don’t go home today unfortunately.  They are trying to arrange for a physio to come to my home to torture me daily.  There are 2 services they provide.  The first one which I would think is more suitable and the physio hear strongly agrees is that the physio’s come 5 days a week for 6 weeks then reassess to see what further help is needed and the second option is to go on the community register and probably be seen about once a week which to be honest would be a waste of time anyhow.  The problem is that in order to get the 5 day a week treatment they need to come and assess me as an in patient and they only do it on a Tuesday and Thursday therefore I may have to stay till they come on Tuesday.  I know the doctor and the regular physio were trying to push for me to be assessed whilst in the day unit if I could come in on Tuesday and I am waiting to see what the outcome is later on.  It is a bit of a pain I know but if it has to be it has to be I guess.

Okay then I going to tuck into my Bacon and tomatoes for breakfast as one of my favourites is on this morning and she loves to spoil me.  You see we don’t get bacon on this ward at all its just that she borrows it from another ward she regularly works just for me.  Bless her she is sweet.

See Ya!!