Wednesday 7 December 2011

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.

14 comments:

  1. Good luck Kirstie hope yr better n back home exercising soon thinking of u Rebecca x

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  2. You're amazıng. NOTHING wıll stop you.

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  3. Oh sounds like a crappy week but hey you've had worse. Keep smiling your amazing .High sugars are a sign of infection too so your most probably right. Hope your over this soon x

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  4. Thinking of you Kirstie. Good luck :)

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  5. Hope you get well very soon x

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  6. Good luck Kirstie. X

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  7. Good luck, I'm keeping everything crossed for you! Xx @mcewen29 xX

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  8. hope everything is going well for u i have 2 grandchildren with cf one of 5 and one of 3 the youngest has just come out of hospital after being in for 2 weeks in exeter its not easy but hope ur feeling better soon xx

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  9. Hello Kirsty. Firstly I hope you get your sugar levels sorted but someone like you with your spirit knows no bounds. I watched your documentary and I blubbed all the way through, happy tears though in the end. I hope our little Lottie is just like you, she had her liver tx in July before she was even supposed to have entered this world. You are both miraculous and am in awe of you and people like you, we are hugely trying to raise awarness of organ donation, who knows maybe you and Lottie could do something together sometime. we live in torquay and really keen to get in touch with you. In the meantime just really want to tell you just how much you have touched our hearts and to send love to you and your amazing family, love Julie Chris and Lottie (aka chip be) check out her website www.chipbe.com

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  10. ps only put anonymous as cant work out who how to post any other way (techno phobe) , Julie Chris and lottie

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  11. Hope you feel better soon Kirstie and are back home. I watched your documentary and you truly are inspirational to all of us with CF and your little dogs such a cutie. Take care XX

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  12. Would they put you on steroids if your blood sugars are all over the place? My other half w/CF/CFRD is always given IV's over steroids because of poor diabetic control despite ABPA flare-ups.
    Take care x

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  13. Hey,

    We watched the documentary and wow is all i can say. You are so strong and positive despite everything. Its amaxing really, as a lesser person would have given up long ago.

    I hope you have an amazing Christmas with your family and lovely husband, and that you get better soon.

    Lots of love, Laura

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