Pleurisy

So clinic was on thursday! Lung function is up from the start of the course to 75%. This is right at the lower end of my normal range. so I guess it is acceptable but I would of loved to of seen it higher.

After a long discussion with the physio, it was decided that the cause of all my chest plain is probably pleurisy. This is where my lungs have got really inflamed and are rubbing against the chest wall. Well actually its the pleura which is a layer between your lungs and your chest wall that is doing the rubbing.

On examination my chest sounded slightly muffled on the right side (although I have been having more problems with my left) and the physio heard "rubbing" sounds on the right near where I have been experiencing on that side. However when she held my chest while I took some deep breaths in and out my left wasn't expanding at all at the bottom. So that correlated with how I was feeling but not with when you listen to it. However as my physio said she has learnt that CF chests can be very deceptive and can't just go with what they hear through the stethscope to diagnose what is going on.

As well as the pleurisy my physio thinks that on the left side I might have alot of consolidated phlegm which is why it isn't really expanding in the same way as the right (although my sats were nice and stable at 99% so they aren't worried about a lung collapse) and the pain on the left side is a mixture of pleuritic pain and also because the IVs have got into it and is slowly breaking it up.

So whilst the infection has gone for now, I am left with some residual problems. The chest pain can only be treated with ibuprofen and rest. However it is very frustrating when you wake up feeling ok and then discover that the simple act of making a cup of tea and making a bowl of cereal causes the pain to flare up and so you do need painkillers and rest after all. My chest was aching so much today and all I had done was make a cup of tea and wrap my sisters christmas presents ready to send to Cyprus!

It seems I will be on the ibuprofen for awhile and if it hasnt cleared up by the time I go back to clinic I am going to get some prescribed. I'm hoping I wont need them for much longer though.

To end this post I will leave you with my halloween socks :o), which seems completely random I know. However I think they are quite cool and will end this post on a slightly smiley note after the report from clinic, so here they are:

Tomorrow is meant to be the end of IVs. I say meant to be as today and yesterday I've been feeling worse than when I started them, so I'm not convinced I will get away with finishing IVs tomorrow.

Yesterday and today my chest has been aching all day no matter what I've done to try and make it go away. Interestingly yesterday the pain was predominantly on the lower left side which during the night shifted to general all over pain. Today it has been predominantly on the lower right side of my chest with occasional periods of all over chest aching/pain. It is now currently at the all over aching stage. I don't quite know what my CF team will do or say when I pass on this news tomorrow.

Yesterday I was feeling so rough I didnt get up until 9.30am, had a snooze for an hour at 2pm and was in bed at 7pm until 9am this morning! Then today I went into town with my mum thinking I was better. Only to end up sat on a bench in the local shopping centre while my mum finished off a couple of essential shopping items in a few shops before coming back to collect me to take me home again! I couldn't even get halfway round town without bad chest pain. I was just getting slower walking round and my mum could tell something wasn't right. This is worse than when I started my IVs.

My biggest worry is they will decide to take me onto the ward, so in preparation tonight I've downloaded some tv programmes onto my laptop for viewing incase I can't get net access. I will also take a small bag with me, that contains a few days clothing just incase!! As it's an hour each way to my hospital, so it's just too far to travel back for a suitcase and then back to the hospital in one day. therefore if I have a small bag I can stay and my mum can bring in more clothes for me friday or saturday when she would next be able to make it over!!

Fingers crossed I will be coming home IV free and definitely no hospital stay on the horizon!!

Pictures

Attached are some pictures I said I would add over the last week.

This picture is me with my port needled and the normal dressing over it:
This picture is my port needled without a dressing on it. I like to change the tegaderm half way through as I find it abit itchy and so like to give my skin some air for abit if I can:

This is a close up of my port needled without the dressing on. You can see where my skin has gone wrinkly where the tegaderm has been for a week:
This a weeks supply of intravenous antibiotics! The top shelf is Tobramycin in eclipses and the bottom shelf is my Tazocin:

This is me doing my Hypertonic Saline and getting bored, so decided to take a picture. I have to do it through the old pari boy nebuliser as its too powerful in my eflow and I can't cope with it:

This is the results of my skin prick test. My right arm is the first one where you can see a reaction to the House Dust Mites (HDM) and a rather large reaction to cats (C). There is no reaction to grass (G) and a slight reaction to the aspergillus (asp). There is also a large reaction to the histamine (+) but that is what they expect. My reaction to the cats was as large as the one to the histamine! On my left arm is the repeat test for the aspergillus. This was taken quite early on in the second test so you can't really see any reactions as yet but I got as big a reaction to the control (+) again the second time and a slight reaction to aspergillus again:

So I think thats all the photos I said I would post.

Mid way through

Physio visited this afternoon. I'm about halfway through my ivs now (technically tomorrow morning will herald the mid way mark so this afternoon was close enough!). She did my lung function and listened to my chest to check things were going ok.

So at the start of IVs:

• chest was clear (on listening too but I was coughing away like a trooper and bringing lots of phlegm up!)
  

• Lung function came in at 71%

Halfway through my IVs:

• Not coughing quite so much, still bringing lots of phlegm up. On listening to my chest now has slight muffling on the left hand side and quite a few crackles at the bases of my lungs mainly on the right hand side.
• Lung function came in at 72%

Explain that if you can!!

I am still dealing with tingly lips and i've also had a sore throat the last few days. Feels like there is a lump at the back of my throat which just won't go away! Makes swallowing things abit sore so putting me off food slightly but doing ok.

Finally got online

Ok, so today is the first day I've managed to get on my computer....mainly because yesterday was the first day I brought it round to my parents from my house so I can use it!

Ivs are going ok so far. I'm getting a couple of side effects from them but nothing I can't live with, the main one is a tingly lips sensation. This usually kicks in about half an hour after a dose of IVs and last for 2-3hours afterwards sometimes abit longer. Not painful just abit of a weird sensation. I'm also starting to feel alot more tired and will have to start incorporating mid afternoon naps. My tegaderm is also starting to get really itchy!! So I will be changing the dressing probably tomorrow to give my skin abit of air for a short while before putting the new one on top. All of the dressings my hospital likes to use make me itch to some degree so I just have to live with it. The itching could be alot worse and its not so bad in winter when I'm not really sweating either. It's definitely alot worse when there is hot weather!


Saturday I was at a scouting event called JOTA/JOTI which is Jamboree On The Air/Jamboree On The Internet. It was an international event where all scouting districts are online/ on the radio airwaves at the same time for 2days allowing the kids to talk to other scouts/cubs in other countries. The radio part wasn't really my thing but I sent a few messages over the internet and we got replies from russia, netherlands, greece and the most exotic place: Portsmouth!! (we got quite a few places in the Uk but the kids didnt really care they just enjoyed it). I wasn't allowed to do alot because I'm on IVs so my main job was booking the kids in and out for the day (as they could stay for as long as they liked) and taking the money. It cost me a total of £1 and that is to pay for my badge to go on my camp blanket! I was abit gutted I couldn't stay the night like I originally had hoped to but never mind. I didn't go back on the sunday as I wasn't really feeling upto it but I still get the badge!!

I haven't really done alot since then except do my ivs and nebuliser and physio etc and rest quite abit!

Photos will go up eventually I just havent sorted them out yet.

IVs started......

........And so far so good!

Today has been a long long day. It started when I woke up at 5am and didn't get to sleep again until 7am.
My alarm then went off at 7.45am so I could be up and ready to go to the hospital!
I was showered, dressed and nebuliser and physio by 9am. No time for breakfast though as had to go to the hospital.
Me and my mum arrived in good time for my first appointment which was for the skin prick test (pics to follow later when I've uploaded to computer).
This wasn't as bad as I thought and they tested for house dustmites,grass, cat and aspegillus allergies. They also do 2controls, one you should react to and one you shouldn't!
I was shown to be highly allergic to cats and house dustmites and slightly allergic to aspergillus. The aspergillus one got repeated twice to doubly confirm if the first comes back as a positive reaction.
My reaction to aspergillus however is still not bad enough for them to start treatment, so it is being repeated in 2-3months to see if its got worse!

That took about an hour in total to do, so then it was time for some lunch before going to clinic to start ivs.
Port was needled fine and drugs went through ok. I am on tobramycin once a day which takes about half an hour to go through and tazocin 3times a day. The tazocin takes about 5minutes to do as I do it as a bolus in a syringe.
Also got the results of my bone scan-everything is all ok there which is good :o)

Sorry if this post has bad layout doing it on my blackberry will update properly tomorrow or saturday on the computer

Moving forward...

......ever so slightly since my last post!

Lots of phone calls received today!

My skin prick test for aspergillous is now happening tomorrow morning and is scheduled to take an hour, Might take my camera with me and try and get photos, otherwise I will just take them on my phone and upload them on here somehow.

Tomorrow afternoon I will be starting a 2week course of Ivs, the drug cocktail of choice is tobramycin and tazocin. Fingers crossed they will go well and do a good job.


Still no news on my bone scan results so I shall be hounding for them tomorrow afternoon while in clinic!

In other news my sister has landed safely in Cyprus, they love their new house. Apparently they have a massive garden and there is not one patch of grass and they woke up this mornig to nice sunny weather and a temperature of 25degrees celcius. I woke upto cold and miserable and no idea what the temperature was but needed my fleece on to go into town!!