CF Week

Today it is CF Week so I have been doing my best to try educate people about CF by posting blog posts on facebook everyday. A fair few people have looked at them (I can look how many people have viewed posts etc) so hopefully it has done some good. I'd like to arrange some kind of fundraiser one year but I'm not very good at stuff like that so wouldn't know where to start!


Yesterday I finished my IVs thank god! This course has been horrid and seemed to last forever! The headaches settled down slowly after the first week which was a massive relief but then my eyes really started playing up, so puffy, weepy and sore. I looked like some kind of drug addict with my red, baggy eyes! It got to the point where I couldn't see properly at times and I considered phoning the hospital as I wasn't sure if it was an allergic reaction, I'm sure it is but if it's not serious I tend to put up with it. Anti histamines do not help at all, neither goes putting lots of aqueous cream around them to help with the dryness. The only thing that seems to help a little is if I put some comfort eye drops in my eyes a few times a day. I think its the Tobramycin that causes it as they are worst on a night when it's going in me and the following morning.


On Wednesday I looked a right mess, my eyebrows desperately needed  waxing, my hair looked shocking, puffy red eyes and to top it off I woke up with a coldsore! Grrr! I got my hair done on Wednesday, finished my IVs yesterday so my eyes are looking better already and I got my eyebrows waxed today, the only remaining problem is the coldsore! At least I am feeling back to my normal self anyway!


My fev1 was 44%, my weight is 54kg and my sats were 95% so all is looking OK!


I had a fit to fly test about 3 weeks ago and failed miserably. My sats fell to about 85% when given oxygen for 20 minutes that would be the same as on a plane. Therefore I need extra oxygen on our flight to Italy, I've never needed oxygen for a short haul flight before so I'm a bit gutted really. Luckily Thompson who we are flying with provide free oxygen (we checked when booking just in case) and the form my Doctor needed to fill in was really simple. However the letter needs to be signed no more than a month before travel so they have said they can't accept it and I need another, so annoying! I've just changed the date on the letter and will send it again in a few weeks...! I've also sorted our travel insurance, the quote I got before was no longer valid as I needed oxygen on the flight and they wouldn't cover me anymore. Luckily the broker (Gill Noble) found another company for me and I also called Insurance Choice but the brokers quote was cheaper at £185 for Pete and I, so we went for that. The joys of having an illness and going on holiday!!

Busy Weekend

I've had a busy few days so think I'm just going to relax today and take it easy, I might attempt to go food shopping and walk Alfie, but we'll see!

On Friday night we went for a curry with my dad and his partner and my brother and his girlfriend which was very nice and I also had a few glasses of wine.

Then on Saturday we went to a surrogacy social event, which involved doing a two hour walk. Not the greatest idea for me to agree to take part in, but needs must and all that! As we got closer in the car I kept commenting to Pete how hilly it looked and started to panic! I really don't need to be coughing my guts up for two hours in front if people I hardly know and when I'm trying to make a good impression! At the start of the walk there was an easy route and more difficult one and we were all to meet up about 15 minutes later, I do not think labelling it 'easy' was the correct term. There were two really steep bits so not easy (!) but I managed OK and then once we were on flat and going back downhill it was even better. I think I would have struggled if I wasn't feeling great, but since my chest is feeling good at the moment I managed. I slept well on Saturday night anyway and coughed some very thick sputum up in my physio session that night! I really had to push myself to do my physio, I hate doing it when I feel really tired, it's the last thing you want to be forcing yourself to do!

On Sunday we went to a barbecue at Pete's parents as it was his sisters birthday. The weather was beautiful and we had a good day just sitting in the garden. Here are some pictures

Pete's sister the birthday girl!

Pete's sister, baby due in 11 weeks :o)

I couldn't sleep at all on Sunday night and managed to get about an hours sleep, even though I was so tired. I hate it when I can't sleep but then I'm too tired to try and do anything else! I can't understand how your body can not fall asleep when it's so tired!

On Monday my mum and I went to this barber workshop that was supposed to be on 3D patterns but it was like a basic barbering course, we managed to sneak out before the end. We sat there for two hours and didn't even get a break or offered a drink and the chairs were so uncomfortable! Couldn't wait to get out!

In the afternoon I had a flight test as we are going on holiday in a month, wahoo! I just managed to pass the flight test. When you have a flight test they put some gel on your ear for 10 minutes and it heats up your ear so it bleeds more. They then cut it , and collect some blood from it in a thin tube. They put the blood in this machine and it sucks it out of the tube it then gives some numbers about blood saturation levels and CO2 levels. They then put a monitor on your finger to measure your stats and then attach you to some oxygen and you have to wear the mask for about 20 minutes. During this 20 minutes they deliver you lower %;s of oxygen as what would happen on a flight. My stats were 94% at the beginning and the lowest they dropped to were 88%. After 20 minutes they cut your ear again and take some more blood and take the same measurements in the machine, they then remove the oxygen until your stats have returned to normal.

I am still sitting on borderline, which means on short haul flights I'm OK and don't need oxygen, but anything longer than 5hours+ and I'm going to need oxygen as I could start to feel unwell such as feel very tired, sick and get headaches due to low levels of oxygen and even end up having a collapsed lung.

I then had an outpatients appointment but they had arranged to see me on the ward at St James since I was already there for the flight test. My lung function is 41% and my weight is 55.7kg. So overall I'm stable and although my lung function isn't the highest it can be, it's sitting at about my average so they are happy with me and I don't have to see them again for 6 weeks, fingers crossed! I also had my port flushed which went fine, got my letters to take with me on my holiday (one says I am fit to fly and one says I need to take my medication with me for medical purposes i.e I'm not a drug dealer!), got a prescription for salt tablets for my holiday and off I went very happy! I need extra salt when I sweat as people with CF lose alot of salt and can get ill if it's not replaced, so whenever I am in a warm environment I need to take salt tablets. I took some at the weekend too as it was quite warm then. If I don't take them I tend to feel very tired and my body aches, especially my legs!

Ps- Sorry about the massive gaps between paragraphs, blogger is a pain lately and I can't get it to leave smaller gaps!

Holiday Coundown Begins!

Went to the hospital today to finish my IVs even though I technically finished them on Saturday. My fev1 is up to 42% and fvc is down slightly at 59%, but fev1 is the most important and its gone up and is back in the 40% range so I am happy!
My weight was 53.5kg, I don't get it! How can I put on and lose 3kg in 3-4 weeks? Its crazy, I think I am going to stop paying attention to my weight, its like its on a yoyo! I haven't had any supplements for weeks, I just couldn't be bothered making them when on my IVs, maybe I'll start them again after my holiday, I mean who wants to put weight on before a holiday?!

The best news of all is that I don't need oxygen for my flight! Apparently my blood gases fell to 7.3 and 7.4 is the bracket they use, so I am still borderline and therefore only need oxygen on long haul flights. I rang BMI Baby yesterday to find out what I'd need to do if I did need oxygen, I was told it was £100 per flight (so that would be £200 as I have a flight there and flight back) plus £30 for medical clearance! I really do not know how they get away with it, I was so angry I cried afterwards because if I needed oxygen there was nothing I could do about it and they know it! It's taking advantage and I think it's disgraceful. It does not cost £100 to supply some oxygen for a 2 hour flight. Whats medical clearance? I'll tell you what it is, it's them sending my doctor a fax for the doctor to fill some details in. From now on whenever I book a holiday I shall make sure the airline provides free oxygen or the charge is reasonable. I don't know when I am going to stop being borderline and need oxygen on short haul flights and I won't let companies take advantage of my illness! Anyway now this is over I can just look forward to my holiday, without any worries!

This morning a lady came around from the council to check our second room is been used a treatment room. This means I can get a discount in our council tax, all my IV stuff is still in there plus my physio table, so she had a quick look and said that was fine.

I fear I may be seeing more assessors regarding benefits etc after the Budget yesterday. Everyone on DLA (new and current) is going to have a medical screening by 2013 apparently. This has worried me as I rely heavily on my DLA, it forms part of my income to help pay the bills, mortgage etc. I know I am not a fraud and people keep saying 'well if you are genuine you will be OK' but people can be very naive. Disability is whatever the government say it is, meeting with someone for an hour or so doesn't really give a fair few of all the problems someone with an unseen disability like me has to face. If I lost my DLA or it was reduced, I would possibly have to go back to work so we could stay in our house. This would have a negative impact on my health and help it to deteriorate quicker, I've tried working, I'd love to be able to work and I still do work a few hours a week (which tires me out!), but I know from experience that even working part-time affects my compliance, energy and overall health. So yes I am a tad worried about these so called assessments! But I also agree that there are loads of people on benefits who are not disabled or ill and they need to be made to go back to work. So it's a catch 22 really! However I'll worry about it when the times comes and have faith in the system...!

Arghhh Matey!

It feels so good to be getting back to living and enjoying myself, when you are on IVs and they are making you feel so emotional and rubbish, its difficult to see any light at the end of the tunnel. Yes I know in a few months it will all happen again, I'm not like other non-CF people, it's not a one off, it's something that happens regularly. However the months in between make it worthwhile, the few weeks after when I know I'm free and I don't have to go back to outpatients for awhile. I can just be me and enjoy life!

I often say people with CF appreciate life more and people ask me what I mean by that, how do they appreciate it more? Well because we have to work so bloody hard for it! On Saturday I had to do my last dose of IVs, then work at my mums shop for a few hours, then go get my needle taken out, then get home and get a proper shower for the first time in 2 weeks. So yes that shower was amazing and I am sure I appreciated that shower alot more then anyone else appreciates a shower! Then I had to get ready and do my physio and nebuliser before going out. So yes I think I do think I appreciated that night out more than others, I haven't been out for three weeks, I've felt like crap and it felt so good to be partying!

I went to my cousins house party and it was a pirates and princesses party so naturally I dressed as a pirate! It was another friends birthday and she was in town so after midnight I rounded some people up and went into town to see her but I only saw her for a few minutes. After a few hours my friends wanted to go home so I went back to my cousins party. I mean can you believe that? I probably still had strong antibiotics in my system and drank rather alot, but I wasn't ready to call it a night yet! So yes I think I do make the most of things when I have the energy to do so! I'd just like to point out the idiot bouncer who thought it was extremely funny inspecting my firearm (I had a fake pirate gun), they really need to get out more!

Tell you what, I had a banging hangover on Sunday but it was nothing compared to how I felt on that first week of IVs! Ah the joys of a simple hangover...!

I had my flight test today. I explained what happens in a flight test in this blog entry so won't bother going through it again. My sats fell to 88%! This is not good, I was borderline at 90% last year so I have no idea what this means. I am guessing it means I might need oxygen even on a short haul flight that is less that 2 hours long. I am going to call the hospital tomorrow so that if I do need oxygen I have the documents to take with me on Wednesday to get the doctor to sign to get it sorted asap. I am not impressed, is this a sign my health is worsening?

I have received a letter through the post saying I need to start looking for a new car as my motability car will be getting replaced in September. No I do not get a FREE car as people always like to point out I do, 'oh it must be nice to get a free new car every three years', yeah well it must be nice to have a healthy body arsehole! I get money taken out of my benefits for the car, so it is not free atall, I think I lose about £50 a week in benefits to have the car, so no it's not free atall, it's not like my benefits make me a millionaire as it is. Plus alot of the cars, you have to pay an advancement fee, when you collect it. So yes I do feel lucky I live in a country where I can receive help with transport, but no it's not free and I'd much rather not have CF!!

I'll be quite sad to see my mini go, I can't afford another soft top car and I need something bigger really. I'll miss driving down the motorway with the roof down and my favourite tunes blasting out. There really is something great about going fast and wind isn't there? I imagine running might feel abit like that if you were a good runner, kind of like you are free and invincible, or riding fast on a horse! On the way back from the hospital today I went past my junction and carried on to the next then turned and came back just to stay on there abit longer because it's so good!

Fitness

This week I have been trying to get out and about again, mainly to get my fitness back up. Its amazing how quickly your fitness can decrease and then its difficult to tell if your chest is actually better or not!
I've been trying to take Alfie out everyday for a 20-30 minute walk and I also went to the gym on Wednesday which I did not enjoy atall. It was boiling in there and I went on the reclining bike for 10 minutes, then did 30 sit ups, then went on the bike for another 6 minutes and I thought I was going to pass out! I might try and go again today, but it gets so warm in that gym which makes the task so much more difficult. I'm looking forward to be able to start Yoga again, I haven't being for about a month now as the nurse said I probably shouldn't do it when I have a needle in my port, and I miss going!

I'm now not going to the hospital on Wednesday to finish my IV's, they can't see me on Monday, well they can but the main CF doctors can't see me and they think I should see one of them, I'm busy on Tuesday so Wednesday it is. I'm going to go have my needle taken out on Saturday so that's OK! They have also had a cancellation for a flight test so I am going in on Monday, yeay!

My friend is coming around tonight for tea, I feel like I haven't seen my friends for ages. There was a party last week that I didn't go to, so now I feel left out! I know it's only been a few weeks and my friends aren't that shallow, but I do tend to feel like I have been forgotten about and they are all having fun without me, which totally isn't true. They have probably all being busy at work and I wouldn't have seen them anyway! Nevertheless I am glad to be getting my social life back again even if it is just a friend coming around for tea!

Good and the Bad

The good news is I got the bikini from Warehouse. Although I went in and it had gone! So asked a member of staff and she said they had put it in the back, so kindly went and got me some to try on. Mondays must be when they get new stock or something and its only a small store. I also treated myself to three new tops, two are from the famous Primarni...!! (also known as Primark), you can buy things from Primark as a pick me up without feeling bad about spending too much money.

The bad news is that the hospital called me yesterday and they can't fit me in for a flight test before I go on holiday! They have requested if anyone cancels for me to have the appointment but other than that there is nothing they can do! My last one was before our Honeymoon which was just about August time I think, I will refer to previous blog entries to find out (I knew this blog came in handy for something). The doctor is going to see if she can agree I am fit to fly on Monday when I finish my IV's so it all depends on how I am feeling. My last flight test said I was borderline which meant I needed oxygen on long haul flights but not short haul, well this holiday is to the South of France so it's only a short haul, so fingers crossed she will say I am OK as Pete looked on BMI Baby's website (who we think we are flying with...) and it says oxygen is £100 for each flight!

Other good news is I am starting to feel more myself, I can't tell if my chest is feeling better, it's so difficult to tell when the IV's are still making you feel tired and messing with your chest. The good thing is, I finish my IV's on Saturday but not going to the hospital until Monday so by then the drugs will be out of my system and I will hopefully know if I actually feel better than when I started. Although it's hard to remember since it seems like I have been on my IVs forever! Seriously, it feels like forever! I am getting so frustrated now and want to be off them!

Edit: Just looked and my last flight test was the 11th June 2009, gulp!

Flight Test part 2

Well I received a nice letter this morning informing me I needed to call the doctor as my flight test was borderline. My oxygen level in the blood sample fell from 9.5 to 7.1, a value of less than 6.6 means you definitely need oxygen and between 6.6 and 7.4 means borderline. He said it would depend on if my flight was long haul or short haul to whether I would need oxygen.
Since I am going to Thailand I wasn't holding much hope!
So it turns out the lady lied at the flight test, she said I'd be fine. Peh!

I have contacted Emirates and oxygen is free (I checked this before we booked just incase), they have sent me a form to fill in which I have to send back a month before we fly. The form looks abit complicated! There is a part the doctor has to fill in so I'll take it to outpatients next week.

I guess there are positives and negatives to needing oxygen:
+We will get to sit at the front so have extra legroon
+I will get my own air supply so less likely to breathe in any bugs etc in the air
+I will feel more refreshed and less tired at the end of the flight
+The air attendants might be extra nice to me
-I wont exactly look sexy at the start of our honeymoon
-I have never needed oxygen before in my whole life so have no idea how anything works
-Its an extra worry when checking in etc

I have felt abit groggy these past few days. On Tuesday morning I felt randomly sick and thought I might pass out, I laid down for half and hour and it went away. How random!
Then yesterday I developed a headache which seems to have carried on into today, not very impressed!
The physio three times a day hasn't really worked out, my sputum also seemed to get better so I didn't bother trying to pursue it. However it now seems to be all thick again, oh joy!

The front tyres on my car seem to be going bald so I took the car to Kwik Fit yesterday, they have ordered me in some new ones and are going to call me when they get them in. On motability you get 2 free tyre replacements and you have to take the car to Kwik Fit to get them replaced. I always get nervous going as I think they are going to think I'm an idiot, but i think I sounded like I knew what I was talking about yesterday. The guy seemed to take me seriously anyway!

Flight Test

I had my flight test today, I was abit nervous because a) I didn't really know where to go and b) I was scared they would say I needed oxygen.

Turns out the thing I needed to be nervous about was actually having a bloody appointment! I asked ages ago about a flight test and was told they would book me one for June/July, I never heard anything so at my last appointment I asked about it again and someone rang me up to say she had booked me one for the 11th June. She then called back about 10 minutes later saying I already had one booked for the 20th July. I said I thought this was abit late to arrange oxygen if required, I will have alot of stuff to arrange in August so I don't want to add to the list!

I received 2 letters with both dates asking me to confirm the appointments so I called up and told a different lady that I was going to the one on the 11th. She was not happy, she had booked the other one for me and basically said I was having it too soon and why did I ask for another one? I explained noone had told me she had booked me one and it didn't leave me enough time anyway, I explained I was getting married bla bla. Anyway she said 'fine go on Thursday' and hung up on me!!!!! How rude!!

So I turned up today and they had no record of me apart from my appointment on the 20th July. The guy called the ward and spoke to the rude lady (I could tell it was her) and she denied she had anything to do with it! He didn't tell me this but I gathered it from his side of the conversation. He then spoke to the other lady who had changed it for me originally (who is very nice) and then she was passed through to someone else.
In the end they agreed they could fit me in, thank goodness!!!!

When you have a flight test they put some gel on your ear for 10 minutes and it heats up your ear so it bleeds more. They then cut it which yes it does hurt abit, and collect some blood from it, my ear bled like crazy and I got blood all down my neck and on my chest!! They put the blood in this machine, it sucks it out of the tube which is quite cool. It then gives them some numbers that I don't understand.
They then put a monitor on your finger to measure your stats and then attach you to some oxygen and you have to wear the mask for about 20 minutes. During this 20 minutes they deliver you lower %;s of oxygen as what would happen on a flight. My stats were 95% at the beginning and the lowest they dropped to were 89%.
After 20 minutes they cut your ear again and take some more blood and then remove the oxygen until your stats have returned to normal.
She said I won't need oxygen as stats falling to 85% is when they start recommending it. That's it for the test and yeay I passed!!