Sunday, October 31, 2010


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:

Wednesday, October 27, 2010

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!!

Thursday, October 21, 2010


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.

Wednesday, October 20, 2010

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.

Tuesday, October 19, 2010

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.

Thursday, October 14, 2010

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

Wednesday, October 13, 2010

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!!

Tuesday, October 12, 2010

Hospital rant!

Hospitals especially mine it seems at the minute are useless!!!

I will be starting IVs on thursday at home but still my questions have not been answered that I have been asking since last wednesday. These questions which I feel are quite important are just being ignored as if my health doesn't matter and they can't seem to understand why I want these things sorting if it means getting medication I might need sooner so I can stay as well as possible.

So questions:
1) Am I having a skin prick test for aspergillus or not? If so will it be done quicker if I am inpatient for my IVs?? (still being chased up if I need one or not and hopefully they will know by thursday 2whole weeks after saying it was being sorted and they still dont know if I really need one. So lots of time going by before I may start treatment for this, despite my history showing that actually clearly aspergillus is a problem for me and explains so much stuff).
2) What are the results from my DEXA bone scan? (They havent even checked the system for the results and again this was done 2weeks ago but they should definitely know the results on thursday).
3) Have you sent the fax you were sending the day after I was in clinic (so should of been sent on the 30th sept) containing details of a prescription so I can trial a new drug that is meant to make it easier to shift sputum?? NO! If it still hasnt been sent they will just do a prescription at the hospital tomorrow and have the drug ready for me thursday so I dont have to visit hospital pharmacy. I wont visit there unless it is an absolute emergency as the minimum waiting time for their outpatient pharmacy is 50mins!! and it's been known to be as long as 2hours. Well it takes me 50minutes to drive home from the hospital and when you've already been there for a few hours and know you will be hitting rush hour you just don't want to wait in pharmacy!

I'm just so frustrated with them. They don't ring me back when I leave messages so I have to keep chasing them and then they wonder why I don't like trying to contact them between clinic appointments!!

Saturday, October 9, 2010

Rediscovering blogging

I thought maybe it was time I rediscovered blogging. Alot has happened in the time since I last blogged which was March apparently.

So a quick run down of events based on the best of my abilities!


Nothing overly exciting happened. I went on my first scout leader training weekend and went on parade for st georges day with the scouts!


I was feeling pretty rough at the beginning of May but managed on just orals and didn't need more ivs. I went away for the weekend to PGL Caythorpe again with the cubs and scouts! They all had a good time and I enjoyed myself too (despite being pretty poorly and going against medical advice by being there!). We did some cool activities (leaders got to participate too!). I think my favourite was aeroball and I also had go on another activity (I cant remember its name) where we had to climb a very tall pole. When you reach the top you stand on a very small ledge and then jump and try and grab a trapeze type bar.

There was a couple of family birthdays in May and we had a day out to celebrate those.


I furthered my TRBL caseworker training and did a course that enabled me to fill in electronic form As, meaning the clients I go and see get there cases sent in quicker and seen too slightly faster (As they dont have to wait for the forms to arrive at the county office in the post). Since then I have completed 5or6 cases, which is quite a few for the summer months (This tends to be a quieter for the legion and it gets busier in the lead up to and just after christmas).

I also spent a week on holiday in Clacton-on-Sea. It's not really a place I would recommend, there isnt really a lot in the area to do but it was nice and peaceful. So if you like quiet and dont really mind not doing anything then go there!!

I also split up with my bf in June after 10months together. Things weren't working and I was increasingly more unhappy so it was the right thing to do (it has however consequently lead to alot of problems since which im not going to get into, but i am now having to keep a diary for harassment purposes and have been recommended to go to the police if it doesnt stop soon!).


The first weekend in July I was on scout camp at our local campsite. The weather was excellent and kids had a fantastic time doing scouting activities and I just enjoyed the experience of my first real scout camp.

My friend visited for a weekend which was fab as I hadnt seen her since March!! Lots of laughs and fun times :o)


This was a busy month!! I gained a new neice and my twin brother is making a fab daddy!! Just 12days later my sister got married! It was a beautiful service and a wonderful day all round.

A few days after that it was my birthday and in the same week I also had the test for my Annual Review at the hospital. Those all went well on the day and all ran to time, which was highly unusual but definitely a good thing.


I got some good news on my diabetes front, my HbA1c (which is the blood test done to measure your blood glucose levels over the past 3months) came in at 7.4!! The top end of acceptable is 7.5. I am within normal range, this is very exciting and good news. After a number of years of denial and ignoring my diabetes really I finally started to care in December last year. This was the time I was sent on the EDWARD course (which I think I blogged about). At that time my HbA1c was 12.9- this is very not good as indicated my blood sugars on a daily basis were running in the 20s, they should be between 4-7! My current result means I am mostly within the 4-7 range but still having the odd high. This is accurate as I also do my own daily blood glucose tests with a glucose monitor. Since being on the course I have tried so hard so was very happy to see those results.

I also spent a week away with my friend B in Great Yarmouth. It was a good time and have a lot of good memories from it.

Unfortunately when getting home we had some bad news, we found out our mutual friend A had taken her own life. I have mentioned A before in my blog, she was very ill with some mental health problems and was haunted by events in her past. This had not been her first attempt and I am just very sad that she finally succeeded in taking her life. I just hope it frees her from what she couldnt escape in life. I found this a shock because she had been doing so well over the last 6months or so and seemed quite positive as she had got married and was trying for a baby. R.I.P. AW

At the end of September I attended a beaver sleepover. This is not my usual group but they needed some leaders and I said I was happy to help out. I love beavers!!! They are aged 7 or 8 and it is such a fab scouting section to be a leader for. I think it might help that I have such a love of childrens crafty activities and playing games that I get on so well with the beavers. I'm currently a scout leader but if i was given the choice to move to a beaver section permanently instead of the scout I would move without hesitation! As much as I love the scouts I enjoyed being with the beavers so much more. It's alot more hands on in terms of the activities you do and it was just enjoyable.

So that brings me to October!

The weekend after the beaver sleepover (1st-3rd Oct) I was on a scout survival camp! This involved sleeping in a marquee, getting very muddy and wet and cold! The kids all had a fab time. It was actually cubs and scouts there and they werent bothered by the rain at all. They also loved the fact they got so muddy as they couldnt have a shower the whole time we were there as there aren't showers at the campsite (we do have proper toilets and running water but only cold water in the sinks). My main job was to keep the altar fire going and keep hot water on the go at all time for drinks. I did a good job of this! It was mostly fun and we survived the rain and definitely earnt our camp blanket badges.

Since then I've had my flu jab (ok, no side effects except an achy arm for about 36hours afterwards) and been back to clinic for my Annual review results. These were mixed!! There are some questions over aspergillus because some blood results came back high and I may or may not be having extra tests for this (its not 100% clear after finally getting hold of my nurse by phone a few days later to confirm things and I will find out monday). I am still awaiting results of my bone scan, my vitamin levels are still low but others were all ok.

I've been on oral antibiotics for the past fortnight. These havent made a lot of difference and I will be starting IVs on thursday. I am hoping these will all be at home, but if I need the extra tests for aspergillus I will be having one of the weeks in hospital so they can be done sooner rather than later!! So will find out for definite on monday.

In other news I had to say goodbye to my sister today :o( She is moving to cyprus for 3yrs with her new hubby (who is RAF and has been posted there with his promotion!! He asked for lincolnshire, uk and got Cyprus!). It was a good afternoon, the whole family were together. We had some laughs and enjoyed a meal together but at the end there were some tears as we said goodbye. I was doing well until I saw my sister to cry and then I couldnt hold mine back either. She doesn't fly until tuesday but has so much stuff to do that I won't see her again between now and then. I will miss her so much, but we all have webcams and msn and internet connections. We will still be in touch and Cyprus is only 2hours away on a plane to visit. I will only be able to visit in the "winter" months though as the heat and humidity will be too much for me and will play havoc with my health (mainly the control of my diabetes!). She will be back in the UK in february, so it will be 4months before I will see her again in person. It's going to be weird but I know she is so excited to go and I will send her lots of parcels and messages and stuff like that.

I think I'm upto date again and will be blogging again with some kind of frequency (hopefully!).