I have recently started using my feeding tube for supplemental nutrition. I have been struggling for a while with eating; many types of food have become difficult to eat and even the easier ones still take time and occasionally result in a choking incident. The effort required combined with poor appetite meant it was becoming difficult to get through the recommended calories every day. With my weight at 9 stones it was important not to lose any more and having gone to the trouble and through the considerable discomfort (courtesy of the incompetent NHS nurses) of having the feeding tube (PEG) done, it seemed daft to die of malnutrition.
Having now mentioned the issues having the procedure, I feel compelled to tell some home truths about "our wonderful nurses". I am sure that there are many nurses who are caring, empathic, competent and completely committed to their profession, but I wish the media and politicians would acknowledge the fact that there is significant proportion who are uncaring, impatient and unfit for the job; nurses who think that the debt of honour they are owed for undertaking such a worthy vocation, negates any need to demonstrate any of the qualities of a decent nurse. I won't go into specifics but the experiences of me getting the PEG, Tracys post caesarian care, the indifference and lack of interest in caring for my dad before he died, along with many similar instances I know friends have experienced, illustrates that the NHS problems are not just ones of funding and management.
So, getting back to the original topic, the tube which has been sticking out of my stomach for the last year is now connected every evening to another tube, which via a small pump is connected to 750 calories worth of.... well, grey liquid... yum. It does take a lot of the pressure off eating but it is yet another piece of equipment and marks another stage of deterioration.
A more scary development has been episodes of shortness of breath. I have been coinciding any eating that I can do with the carer visits and although I am not eating huge amounts I was getting short of breath afterwards. It is caused by the stomach expanding and giving a weakened diaphram less room to move. Despite being well aware of the steady decline in respiritory test figures, reaching a point where I may soon need ventilation equipment, even if only on an intermittant basis for now, is difficult to come to terms with. It leaves no doubt about what's going on and without wanting to be over dramatic I can't help looking at it as being the beginning of the end game. Up to this point I have always been able to cushion the impact of increasing physical disability with the comfort of knowing my breathing was not too badly affected, but that is no longer the case. It forces me to think about what degree of intervention I will want. Hopefully the pace of deterioration will remain relatively slow but it is difficult to find anything positive at the moment.