Outpatients

I was pleasantly surprised with my appointment today, first of all there was no traffic as I thought there would be so I got there nice and early. Infact I got there before the staff (outpatients is at a different hospital to the ward so they have to come over from the ward), I was abit worried I had come on the wrong day since I was sat there by myself for about 10 minutes, but I had a walk around and saw all the patient files ready in a box so I knew they were on their way!

I saw the nice doctor today who actually knows what he is talking about and easy to talk to , he is also quite cute which always helps :o) well apart from when you are describing your mucus and poos to him and then its not so good. I hate it when the doctors just fill in the stupid sheet they have and couldn't give a toss what response you give as long as they get their sheet filled in, like for example one of the questions is 'how many times a day do you have a no.2 (except they dont say no.2, they say 'opening your bowls'), if I said '60 times a day' they would just nod their head and put it on the sheet but not actually address the fact I am spending my life on the loo. These type of doctors are generally not proper cf doctors, they spend like 3 months in the cf section then move on, I dont really understand how it all works but if a doctor walks in the room who I have not seen before I sigh a little and think here we go, a waste of 10 minutes of my life! Whats also really annoying is they ask me stuff rather than looking in the notes and sometimes even ask me what I suggest! I mean come on, im good and can usually predict what they will suggest but they need to put that medical degree to some use!

My fev1 was 41%, fev 68%, so the same as when I finished my ivs really. My weight has gone up abit to 57.6kg and my o2 sats were 99%, I cant remember the last time they were that high!

I have been put back on tobi since promixin gave me the headaches, the doctor said this has happened to about 3 other patients and some have even had ct scans on their heads to check everything was ok up there!

I filled in a questionnaire for the psychologist, they are doing some study on depression in cf. I like to do my bit for research!! If im honest I love filling stuff in. Its abit of a weird thing about me, I like filling in application forms and stuff (as long as I don't have to go find stuff to go with it for evidence like birth certificates, statements etc I hate that as it involves me having to move!).

The doctor reckons my cough is being caused by my aspergillus, as my count is quite high and i'm sensitive to it. Aspergillus only causes problems if you are sensitive to it, in other words it is my body trying to deal with it that causes the problems, im sure its not that great for my chest anyway but im comparison to other things it probably would not be a big deal if I wasn't sensitive to it. I actually saw the results today from a cough swab and it would appear my chest has like a billion things growing on it (ok I might be exaggerating abit there, but there were at least 5 things). He says he could put me on steroids and/or voriconazole but as soon as I finish the course the symptoms will come back and the negative side effects from these medications may out weight the benefits. Since the coughing is more of an annoyance than actually affecting my health he said he would see me in 5 weeks and see how im going then. He said I might start some ivs then as I will be due some, I told him I was told not to have ivs 3 monthly anymore, I used to have them 3 monthly however I was feeling, but evidence has now shown it can be toxic or something so they were trying to stop it. The Dr said that because I haven't been well recently it might be a good idea to have some to keep me well, but we will see.

My port flushed well, I was so nervous about having it done! It didnt bleed back (I dont mean it didnt bleed when she took the needle out I mean no blood came out when she tried to get some out with the syringe),the nurse didn't need any blood but was just testing for in the future! I hope it does bleed back, sometimes it depends how you hold your arm or if you cough it bleeds back, weird but it works!

Pete is staying at his parents tonight as he is going out with his friends from back home. So ive had a takeaway pizza and going to watch the Tudors later, I love it! I love the Tudors, im such a geek. I always watch stuff about them and sometimes even find myself on the internet reading about them, how sad am I?! Oh dear, I like filling in forms and researching the Tudors, i'm a right weirdo!

Oh here is a picture of a book the hospital have created about everything to do with cf, 'a nice bit of light reading for me' as the nurse described it! Its got some interesting things in but alot of its too complicated and I cant be bothered to even try understand it! Its good that they make the effort to do these things though, I can refer to it like for example I looked up aspergillus and was going to pretend I knew loads about it when I wrote this blog but I wouldn't want to deceive you! I thought I would include my hand in the picture to show off my ring off again haha!

Headache

I've not been too good these past few days and still feeling pretty rubbish. Thursday I slept all afternoon and woke up covered in sweat. In the evening I could feel a headache coming on but it wasn't too bad. Friday morning I woke up with a terrible headache, I couldn't get out of bed and eventually took some ibuprofen and fell back to sleep. I woke up later and the ibuprofen had failed to do it's job, infact my head felt worse! It was a pain right behind my eyes and around the front of my head, I didn't dare cough or even move my eyes around too much as that made it hurt. I did some washing to try take my mind of it and even went into town to collect something, I felt like I was going to pass out walking around so came back home. It did get abit better then got worse again, I bought some paracetamol with codeine, when the boots pharmacist asked if I was on any other medication I said no, they refuse to sell me anything if I tell them I have cf, once another woman would not sell me a canesten tablet!

Anyway these taken with ibuprofen did not take the headache away and I went to bed at 8.30pm as I couldn't even keep my eyes open by this point as the light was painful to my eyes. I had a rubbish nights sleep and continued to take the painkillers even though they were not helping, I was slightly concerned I was overdosing since I decided I would take 3 ibuprofen as well as 2 paracetamol to see if that would help. It helped me sleep if nothing else. This morning the pain had gone abit but it soon came back. Then I started to feel sick and was losing my balance and my vision was abit fuzzy, I couldn't really focus on things. I was near to tears and asked my mum to phone the hospital to see what I should do, i've never had a headache last so long and not go with massive amounts of painkillers.

The ward said it could be my promixin causing the headaches so to stop doing it and they said it could be the codeine causing me to feel woozy. They said I should take no more than 4 doses in one day but I have decided to stop taking it. The doctor then called me back and was asking me if my neck was stiff, he indicated I may have meningitis as my neck is abit sore, he said to call back in 3 hours and I may have to go to A&E!! I had a bath and put my head in the water, its a trick my brother does when he gets headache, it seemed to work abit, the pink dots that were moving on the ceiling above the bath kept me entertained for awhile..... I called the hospital back and they said I could go to see them if I wanted, I said i'll see how it goes as I did feel better but still sick. Anyway, the headache is still there abit and I still feel abit sick but no longer woozy so i'm going to see how it goes. The headache means I have not dared cough for 2 days as it hurts too much, now I feel abit clogged up and flemy, I hope it doesn't affect my chest. Anyway don't think sitting at the laptop is a good way to look after my brain so I shall say goodbye xx

I neglected my car

Well today I had a problem with my car. The engine keeps overheating and making noises for ages after I turn it off, I have asked several people about their opinions on this and even looked in the the manual but it just said drive slowly until it goes back to normal or something along those lines. I finally decided to call the garage after my dad told me to do this. I asked if I simply needed to check the water as I decided this was the problem as my friend checked it when we went swimming last night and it was empty! But they told me they would send someone out to fix it. I had to cancel going to do my voluntary work and wait for him to come. To be fair it only took him about 40 minutes from when I called to get here and I was right (or should I say my friend was) , it was the water. He said once it has run out though that they have to check it has no air in it or something. Anyway it was ok and he says I have to check the water every month now. I have never checked the water before in any previous cars so this is new to me.....shows how much I know about cars!

I went for my hair doing, I got my roots done and about an inch taken off. I had to park miles away (well maybe it was about a 5 minute walk but it felt like miles) as all the spaces outside on the road were taken (all the spaces are reserved for disabled so it is usually ok). By the time I got there I was knackered dodging people, its not very level ground and it was warm. On my way back I stopped into Argos and got a fan, yeay! I thought they may have sold out but they had some, wahoo!

I have realised something else was missed off my prescription and was going to go to the GP's again to get another prescription, its never ending! But by the time i'd had my hair done it was 3 and I was hungry for my crumpets in the cupboard at home. I stopped off at my mums to collect Alfie as he was hanging with Murphy whilst I went for my hair doing and she was vacuuming out her car so she did mine too. Thats was nice of her! I've been meaning to do it for ages but I always put if off as its too much hard work and get all out of breath etc.

I've started on promixin today as my tobi has now run out and now I am sensitive to promixin again I can go back on it. Its better because it doesn't take as long to go through (although compared to when I had that porta-neb even the tobi seems to take no time at all now!), but the trouble is that promixin comes as a powder and has to dissolve with the liquid which takes awhile. You cannot shake it as it makes it get bubbles and then takes ages to go through. I mix mine with salbutamol as mixed with saline it makes me all wheezy. I forgot how much it makes me shake after i've taken it through the nebuliser, hopefully this will wear off in a few days from what I can remember. Not sure why it makes me shaky, think its because the salbutamol is so strong?!

In the afternoon I did LOADS of cleaning, I was like a mad woman! Im rather tired now but feel a sense of achievement lol. I dunno how people manage to do all this cleaning and work as well I just couldn't do it. Not at the moment anyway, i'm shattered from just doing that!

first full day free of ivs!!

Well it was good not having to get up to do my iv's this morning, but I still ended getting up at 9.20 due to some builders outside. Your probably thinking 'wish I got to stay in bed until 9.20!', well haha, yes it was very nice!!

The meal last night was good, the first pub we went to wouldn't let babies in so we went to another. Our nephew was good all the way through the meal anyway, he hardly made a noise! He's getting quite big now and is smiling! He's really cute!! I want one but Pete won't let me!! :o(

Before the meal Pete's sister and mum came into the flat as his sister has never seen the flat, I used the opportunity to get Alfie used to having strangers in the house (Alfie has behavioural issues and we have seen a specialist who has given us a plan to follow...). He barked at them and they gave him some treats whilst looking away (apparently looking a a dog when they are barking is threatening) and eventually he calmed down abit which was good.

Now i've finished my iv's I need to start on my nebulised antibiotics again, I have some tobi left over so i'll use them first and then move onto promixin. I became resistant to promixin so had to move onto tobi, but now im sensitive to promixin again. Tobi is pretty expensive so unless it works better than promixin, they prefer you to have the promixin. Since i've been ill recently I don't think the tobi works that well for me! plus it makes you get a croaky voice and tastes gross, and it takes longer to go through. I took some pictures to illustrate how the nebuliser works, I use an i-neb, others with cf may use an e-flow but they all do the same thing but in different ways. So anyway, the tobi gets squirted into the chamber.

Then a lid goes on and then the mouth piece


Then I have to breath in and it squirts a mist into my mouth, I keep breathing in until it vibrates or for as long as I can. Each time I manage to breathe in until it vibrates, it makes me breathe in for abit longer the next time and keeps doing this, if I cant breathe in for that long the next time it reduces the time abit until it finds the right time for me. I keep doing this until it beeps and the smiley face comes up


Then with Tobi I have to do it again, overall it takes under 15 minutes if I can breathe in for a long time but tobi can make me cough and get tight chested. I've got my Dnase down to about 5 breathes which is great, it takes about 2 minutes! Once completed I take it apart, put the bits in the container, give it a rinse then stick it in the steriliser

I called the travel insurance today for when we go to Greece. Getting travel insurance to cover your cf is a NIGHTMARE! most people wont cover you or will for £100's. I managed to get insurance with a company for £86 for me and Pete for the year for worldwide cover as we went to Africa in April, I found this off someone on the cf forum, thank you! ps - people with cf do not use Endsleigh, they say they cover any pre-diagnosed condition but they don't cover cf even if they assure you that they do! Anyway back to my insurance I have, I had to sign a declaration saying I had not been in hospital for 12 months which at the time I hadn't. But since March I have been in hospital twice, so I had to call them to see if they would still cover me. I was so scared they would say no, they asked me like a million questions such as 'do I have blood in my sputum' (no), 'am I on antibiotics' (yes) etc, very specific to cf which makes me think they must have researched it very well!! Anyway they have agreed to cover me as I booked the holiday before I went into hospital. Phew! But if I book another holiday, i'm not sure if they will cover me. She did tell me, but I was so nervous I didn't take in everything she said. She's sending me it all in the post anyway. So that's a relief!

Met up with my friend today, we went to the pub for a light lunch and took Alfie so we sat outside. We then took Alfie for a walk an got an icecream as it was quite sunny. Then coming home it started raining and we had to stop and put the roof up on my car lol! I'm meeting my friends again tonight for a few drinks.

Alf with my friend in the car

Me eating my icecream! (not one of my best pictures!!)