Today I was up at clinic to have my port flushed and pick up some drugs that have proved a bridge too far for my *ahem* crap *ahem* pharmacist to supply. More about him another time...

This was the third port flush that Brad has been attending as part of his learning process for being able to access my port himself at home. We both feel it would be an advantage for him to be able to do this as it means that if we are on holiday he can flush it and also that we don't have to do a 3-hour round-trip to the hospital every 4 weeks. At first I think he found it difficult to get his head round the idea of pushing a two inch steel needle straight down into his wife's chest. I've assured him it hardly hurts but I think its a strange psychological situation to get used to when you are not medically trained!

This appointment helped him quite a bit because the nurse gave him two ports to feel, hold and play with, along with a port needle. One of them was cut in half down the middle which was really good as it enabled us to both see clearly what is inside a port and how the needle needs to hit the metal back plate of the device when it is inserted. I think he can now envisage what he is dealing with under my skin better.

He still watched again today but I've told him that next time he absolutely has to have a go himself. I expect it won't go right the first time (even the nurse missed at first today because my legendary rhino-skin caused the needle to bend in half!) and I am expecting that he won't have anticipated quite how hard he is going to have to push down on the needle to get it through the skin, muscle and silicon centre of the port, but I'm happy to grin and bear it while he gets his confidence and I'm sure in the long run he will be doing it just fine without even thinking about it!

During the procedure one of my consultants came in and told me some good news. Well it may not sound like good news but it is to me...I am seriously anaemic! Why the positive response to this news? Because it seems that I have been anaemic for quite some time, which is exactly what I had suspected for the last 18 months but which I have never been treated for until now. I've struggled with tiredness for a few years but it has been particularly bad for the last 18 months-2 years...so much so that I have become more dependant on my wheelchair, have had to plan each day with meticulous precision so as to ensure I "spend" my meagre allowance of daily energy wisely (e.g. resting all day if I'm going out for the evening etc) and have been generally feeling so utterly exhausted that I can barely function a lot of the time.

About 18 months ago (when I was at my previous CF centre) I tried and tried to get the doctors to take this exhaustion seriously. Unfortunately I think they had already made their mind up that it was all in my head (my history of depression appeared to hang like a cloud over my notes every time they opened them) and after running various tests they as good as said so. Well they said that since the blood tests were all fine there must be a "psychological element" that was causing it, though when I asked what that was (taking into account that I was no longer depressed) they had no suggestions. Winner.

When I tentatively asked if having a Serum Ferritin level of 12 when the normal level is 15-200 could be an issue, I was told that although it was below normal, I didn't need any treatment for it and it was irrelevant. I tried to suggest that at least a trial of iron supplements might be worthwhile, as a final attempt to find a solution, but again was told this was simply not necessary and that actually iron supplements could lead to susceptibility to pseudomonas. Bad idea, please close the door on your way out.

I moved clinic a few months ago and things have been so different that sometimes I feel like crying with relief after visitng the team at my new hospital. They were determined that they were going to find ways of combatting my chronic breathlessness, exhaustion and constant infections. After running some specialised lung function tests my consultant identified that my smaller airways were functioning very poorly and he put me on a new type of inhaler called Spiriva that is usually used in patients with COPD.

Within about a week I noticed a massive difference in my breathlessness. I went from getting hugely out of breath just having a shower (and then collapsing exhausted on the bed and needing help with dressing) to being able to walk round the shops without my wheelchair and without experiencing any noticeable breathlessness. I could have kissed my consultant! The effect wore off a little with time, but I am still so much less breathless than before that it is amazing.

Next on their list of problems was my constant infections . A week after finishing a course of IV's (with minimal results) I would be back heading downhill again. My lungs were also bleeding more and more regularly. After 6 courses of IV's in one year, the team and I decided that an option other than yet more IV's was needed. They decided to try me on nebulised Tazocin, a powerful antibioitc that I am sensitive to but which is not licensed for use in nebulisers as yet (though has been trialled at one other centre before). The difference this has made to me in the last 8 weeks is phenomenal. I haven't needed any IV's or orals and my chest is better than I can remember it being for the last 2 years!

However the one thing that just didn't seem to shift was the exhaustion, barely altering with variations in my chest symptoms. With hindsight I have had the classic symptoms of anaemia - debilitating exhaustion, breathless, looking very pale, flaky nails, a constantly dry mouth and occasional heart palpitations. My team, determined that they would eventually find the cause of my fatigue went back through my recent blood tests results since becoming their patient. When they asked to do some blood tests two weeks ago, I suspected they might be on to something.

Today it turned out my iron levels are skulking around with a miserable expression on their face at a paltry 7ng/ml (the normal scale is usually taken as 15-200 nl/ml in the UK, although one research report concluded iron deficiency was a likely possibility with results below 50ng/ml)). No wonder my poor body has been throwing major strops for a considerable length of time! They can't work out why the levels are so low but I am now popping my iron tablets with gusto and have high hopes of being powered through the ceiling by tomorrow morning with my new-found energy levels. May be a little optimistic, but at least I feel we are finally starting to work out the conundrum of my complicated little system!