Hypertonic Saline

Well as I said on Monday, I started IV's today.

At outpatients my fev1 was 39% so only down 3% from when I last finished my IV's, however my FVC is down by 15%. For those who don't know, Fev1 is how much you blow out in the first second, FVC is how much in total your lungs hold. My FVC was down to 55%, I don't know why there is such a large difference in the two, I think it's because they measure different airways and clearly there is a difference in my airways. If anyone can explain it to me, it would be great! Also anyone who doesn't understand the % stuff, its a % of how much a healthy person my age and height should get. So I think in my FEV1, I blew out 1.4 litres of air which is 39% of what it should be, obviously the amount I should get is an estimate, that's how people can get a FEV1 of 110% because they are blowing out more air than expected.
Fev1 is a more important indicator of how you are doing but obviously FVC is important too.

Anyway because my lung function was slightly down and this cold is making me feel tired and very chesty, plus the trip to London has tired out my poor little lungs, it was decided I should go on IV's. Also Pete and I are going away in September so I want to feel my best by then!

It wasn't a good start today, I only went and drove to the wrong bloody hospital! Outpatients is at Seacroft hospital whereas the ward is at St James, so I went to Seacroft on Monday and then today because I must have turned my brain off whilst driving I just went there on autopilot. St James is about 15 minutes from Seacroft so it wasn't too bad, but I did feel like a right muppet!

My Fev1 was 35% today, so a good job I am going on IV's, but also a good example of how much it can fluctuate day to day. I think I have to face facts that my lung function tends to sit in the 30% range these days rather than the 40%, which is scary to be honest, but i'm going to try my best to at least keep it in the high 30%-low 40% range.

I am going on tobramycin which is once a day and takes an hour to go through and ceftaz which is three times a day and takes about 30-40 minutes to go through. I also tried hypertonic saline today as I told the physio I felt like my physio just wasn't clearing my chest and she agreed an hour to hour and a half of physio a day is enough for any person. So I am now on hypertonic saline which I do before physio through my I-neb, so twice a day. It helps loosen the mucus by creating moisture or something or other, I didn't really listen to her! So now I am doing five nebulisers a day as I still have to do all my others, ekk! Everyone says it tastes horrible but I didn't think it was too bad, she said it's better through the I-neb as it only releases the mist when you breathe in, so it isn't swirling around in your mouth. It does make the back of your throat taste salty, because that's what it is, but it soon wears off afterwards, and it defiantly makes you cough! I'm on 7% rather than 6% as the research suggests 7% works better and I also get it in little nebules which apparently is quite new. I can do it upto 4 times a day if my chest feels really bad, but I think I'll stick to just before my physio sessions for now. I did my first dose at the hospital as they have to check it doesn't make you wheezy, she just checked my Fev1 before and after I'd nebulised it and my Fev1 only fell by 1% so it didn't make me particularly wheezy.

I saw a new doctor today and I didn't get a very good first impression of him. He looks quite young and he didn't even tell me who he was or anything. Then he just went straight into looking at my IVs and asked me if I was having my ceftaz 'TDS?', erm how do I know what that is! Then he referred to a prescription as a P something or other, erm hello I am a patient and don't know all your medical terms! Then he got my sputum pot I had by my side because I had been coughing after doing the hypertonic saline and just took the lid off and looked in! Now there are things you don't do and you don't look at someones sputum you have known for about 2 minutes without at least asking first. I just felt like it was an invasion of my privacy or something, no other doctor has ever done that. Maybe he was abit keen and I'm being harsh, he did seem very eager, I think this may have caused him to appear slightly rude. To be a doctor you have to good at the medical side obviously, but also at the communication with patients!

On Monday I went to yoga and it was like the teacher has read my mind. My back and shoulders have been hurting and feeling tense from coughing and getting out of breathe, and I've been hunching slightly as a result. I arrived at yoga and she told us we were going to work on our posture and spine through stretches, yipee! I'm not kididng you, some of the stretches felt amazing and by the end my back and shoulders felt so much better and I felt like my chest had just opened up. I really would recommend yoga to people with CF, its helps with your posture, your breathing, and some of it is quite hard work so gets some cardio in there! Then there is relaxation at the end which helps you de-stress and calm your mind, which I find can help me get rid of headaches. I've tried pilates and it's not the same, I didn't like that at all, he kept going on about my inner core and I didn't feel it helped me in anyway. But yoga is a big yes, go on, try it!