I'm so pleased that I've managed to recover from the chest infection that I had picked up. My lung function is almost back to my baseline level - FEV1 18% and FVC 50%, so I can't complain too much at that! My infection markers are almost back to an acceptable level. My exercise tolerance has improved dramatically over the last week, that too is almost back to my level of 'normal' I am going to make sure that this continues at home and the physios here have suggested using my non invasive ventilator (NIV) to do more vigorous exercise to build muscle. (Breathing through it that is, not picking it up and doing weight training with it!) If I can build up my muscles that should, potentially, reduce the strain on my heart and lungs. I am also satisfied that my blood sugars are under much tighter control. I don't mind that my CF related diabetes has deteriorated enough to require me to use insulin, this means that I can control it much more efficiently than by using tablets alone.
I am a bit disappointed that my oxygen requirements have increased. Until now, I was using 2 litres a minute for rest and 3 litres for exertion. I now need to use 3 litres a minute at rest. I'm not quite sure what I need for exertion, I'm having this fully assessed with the physios tomorrow. It's just a reminder that CF is an incurable disease and ultimately it's demands on my body will become greater and greater. I will also have to start sleeping with my NIV on at night at home. Again, this is another sign of the diseases' progression, but I mustn't get too disheartened by it. I feel most sorry for Luke having to put up with the noisy machine! As you all know, the doctors had a good old look at my heart. Fortunately there is nothing structurally wrong with it. It just has to work a lot harder to move oxygen around my body. It's just another reminder of how desperately I need this transplant, before further organs become damaged by my failing lungs.
My tachycardia is not solely due to my poor lungs. My doctors really think that my underlying anxiety has a large part to play in it too. I felt really annoyed at this at first, as I didn't actually 'feel' anxious or worried, I hardly cried at all during this hospital admission! Similarly I felt like a total failure as a Christian... If I couldn't let go of my problems did this mean I didn't trust God? I had a visit from a lovely palliative care nurse. She explained that having been on the transplant list for 2 years and living with a life limiting disease, it would be odd if I wasn't feeling any form of anxiety or depression whatsoever! I have been prescribed some anti-anxiety drugs to help me if I feel a panic attack coming on, as well as a small dose of morphine.
Those of you who know me well will know that whilst I was smiling and nodding at the nurse, my mind was going absolutely mad and into overdrive... Firstly, why did her name badge say PALLIATIVE CARE??? Am I about to drop dead? Secondly, I had always been quite 'proud' (for want of a better word) of the way I was dealing with my health problems, now I need drugs to help me even do that?
Soon after she left, I burst into tears and was just distraught - I was having my ECHO that afternoon and had a gym session booked in with the physio. During said gym session I had a good chat (ok, cry - so much for not crying much in this admission!) with my physio and discussed the fact that whilst palliative care is often associated with the end stage of disease, it's also about symptom and pain management and keeping me in a good state, until I receive my transplant. I am more upbeat about it now. I have had a few doses of my new medications and think that they will be really beneficial, particularly when I return home and away from the safe cocoon that is hospital. I saw the palliative care nurse again on Monday and I was much more relaxed and I feel much more enabled to cope with the anxiety I've been feeling.CF is such a multi-faceted disease and the mental health issues which surround it can be so easily overlooked.
As for my feelings of failure as a Christian, I know that was stupid too. After all I'm only human and it is only natural for us to be doubtful and worry at times. I now need to put my trust and faith in God as much as I humanly can and whilst I appreciate that my health has taken a further decline, I have also been given some new 'tools' to help me deal with this, which may keep me well and stable at home for another 2 years, although I would hope that I receive a new pair of lungs much, much sooner than that!
|Me with Mum - Feeling a lot better after a little shopping outing!|