Thursday, 9 February 2012

Slowly, but Surely...

After last week's little 'blip' I am beginning to feel more positive. My heart seems to be behaving itself a bit more consistently. The doctors genuinely seem to think that it is a combination of my heart having to work harder due to my rubbishy lungs, as well as my underlying anxiety surrounding my health and the whole uncertainty of it all. I am a bit annoyed by this, mainly because I thought that I had been doing a good job of lifting up my worries to God and generally trying to chill out over the issue (as much as you can!)... However, while one can control their conscious mind, there's always the subconscious lurking underneath! The doctors have arranged an ECHO, where the heart and major vessels are examined through ultrasound, mainly to placate my worries and to prove that there is nothing structurally 'wrong' with my heart. The team seem very confident that it will be fine and that this is an exercise to help lessen my anxiety.

My exercise tolerance is increasing (I use the term exercise very loosely here!) and am able to walk a bit further each day. My lung function has also improved since admission! I'm hopeful that I can get it even better before I go home! My infection markers have also come down too, which is indicative of the infection being reduced. Luke has also taken me out a few times in the wheelchair to get some fresh air and get out of the four walls of my room! We had a nice stroll down the King's Road this morning, which made me realise how COLD the weather actually is!!!

The doctors seem to think I'm going to be a 'three week girl' which means that I could potentially come home late next week (in time for my birthday, yay!)... Before this though, they are still aiming to reduce my dose of steroids (which they whacked up when I was first admitted to open my airways!) this needs to be done in stages and I think this will begin early next week. As my steroid dose is adjusted, my insulin dose will need adjusting too, as higher doses of steroids mean higher blood sugars, so if I lessen the dose, then I may require less insulin. I am also going to have my oxygen needs re-assessed. At the moment I am still using 3 litres a minute of oxygen at rest, I had previously only required 2 litres a minute at rest. However, I have not been admitted as an inpatient for 2 years, so my oxygen requirements have not been thoroughly assessed for sometime. Goodness knows what my sat levels have been doing at home - I dread to think! The doctors are also going to change my nebulizers, mainly due to the setback I had with my Aztreonam nebulizer. As the bacteria in my lungs are very sensitive to Tobramycin (Tobi), they think that I should use this consistently, not on a rotational basis. The only issue is that I will need regular blood tests, as Tobi can cause toxicity in the kidneys and deafness.

All in all, it's positive news. I certainly seem to be heading in the right direction and should be near my level of 'normal' before I leave here. I just feel a bit despondent when I feel like I have been fighting like a dog just to get back to this normal I speak of, it just seems like a such a huge effort for little return. My consultant described that my health situation can make me feel like I'm on a cliff edge - a small upset can seem like you're plunging down the cliff face. But clinically, this is not always the case, I just feel delicate and am acutely aware of my failing lungs. Plodding along this cliff face is a transient exercise and God willing, I will soon get a new set of lungs which will pull me back from the edge and allow me a second 'go' at life.


1 comment:

  1. Sam, I love your honesty (and your humour!) and will be praying your ECHO is good, and that you continue to improve and are soon home! And just because I don't say it often enough - I think you are amazing and I love you lots! (and there's some for Luke too!) You guys rock! x

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