Lung function drop

Well the last week has been what I would describe as slightly rocky. Since tx I have had minimal problems and had an amazing recovery. My lung function was fev1 98% and 103% so pretty damn good. I had been exercising 4-6 times a week with various class's and gym work. But this last week hasn't been so good, in the run up to this week my exercise had tapered off, I was becoming increasingly tired and lost a fair bit of weight. So last Wednesday I was doing a sign up stall but I had woken with awful stomach pains, unfortunately new lungs does not in anyway mean I'm cureds of CF but my lungs are cf free. I decided not to eat as I knew I had a stomach blockage building, next thing I knew I was very faint and feeling extremely faint. So I packed away and off to the hosp I went and x-ray later and it was confirmed, I had a nasty blockage, so down with the ng tube I went and started to put gastrographin down slowly over night, gladly the rocket fuel like stuff worked and my pooing regime returned. I had also been low on magnesium and had a little top up and some fluids as I was very dehydrated.

So back as home I had been having a few problems with my diabetes lots of high sugars, peeing like an elephant and drinking excessive amounts, I also had lost about 4 kg this was actually the first sign that that it was my sugars that were bad, yes I know I know I should check regularly enough to know it was my sugars but I had got it all under control and thought it might remain predictable and safe. Wrong.  So I started checking v. regularly straight away and next thing I know I'm getting readings of HI on my monitor which means its above 35 and a possible chance of ketones, which are very bad. So I started upping my insulin one evening but nothing was happening and several hours later it was still HI so I was advised to go to A&E off to honiton A&E I go, we have a very basic A&E hardly worth visiting but I thought a simple thing such as high sugars would be acceptable to deal with, apparently not. all I wanted to know I didn't have ketonotis but no all I got was a silly reject doctor telling me how to manage my some what brittle diabetes. Not helpful to say the least as I'm pretty sure he didn't even know what he was talking about. Apparently my lung transplant may have been serious but my sugars are more serious, I'm guessing he didn't see the documentary then (laughs to self) Anyway my sugars are still going nice and high and are not becoming much easier to manage despite regular monitoring and careful insulin management, Today I had a massive hypo of 1.9. Very scary, my heart was racing, my breathing felt scary again and all I wanted to do was lay down while I shook and sweated manically, but I had some jaffas and dinner and all was right again.

Which brings me to where I am now, London, Harefield hospital. I did my lung function the other day and didn't reach over my 4 litres that I usually do on my home monitor and as I looked back I realised that actually iv dropped quit a bit over a period of 2 or so weeks approximately 13%/15% not good, I left it over night, nebbed and physios and repeated in the morning yesterday and that when I rung Harefield who said to come to clinic today, so me and my mum made our way.

My lung function was roughly the same as last time I was here but I had gone up since then and it had come down by my home Spiro, my x ray looks good and my chest sounds better than it did 2weeks ago when I started pulmozyn because of hard lumps of flem. But it was decided I was probably due a bronch as I hadn't had one since tx and a ct. So I'm going back in 2mz morning and staying over night for ct and bronch and then we will decided a plan of action, possibly IV's or steroids depending on rejection or infection, both extremely common in early days but must be tapped on the head asap before causing permanent damage and stopping it tapering off anymore of my lung function. I personally think Its infection, I'm coughing alot still and it feel all a bit irritable.

So That's all really I will let you all know whats going to happen. all in all its no big deal and im not worried. In fact think im a little bit lucky as iv got away with out any blips so far until now.