My husband Ken and I live in Aberdeen and I'm 67 years old. We share our home with our daughter, son-in-law and two grandsons – oh and my dog Brodie.
My husband Ken and I live in Aberdeen and I’m 67 years old. We share our home with our daughter, son-in-law and two grandsons – oh and my dog Brodie.
I worked for the NHS as an Information Services Manager for thirty years until my health problems resulted in increasingly lengthy absences that I reluctantly asked for retirement on the grounds of ill health back in 2001. It was a very strange feeling to go from working in hospital as a member of staff to being a 'frequent flyer' patient!
My health problems started back in 1990’s when I had episodes of severe chest pain, originally thought to be cardiac but eventually attributed to oesophageal dysfunction. Tests indicated high pressure in my oesophagus was causing muscular spasms. I twice underwent surgery to alleviate the problem but without success, the symptoms continued and in 1998 I had an oesophagectomy.
I have since been unable to eat or drink adequately due to ongoing problems following the surgery. Numerous attempts at enteral feeding were unsuccessful with anything above a minimal rate caused severe pain and spasms. It was an unhappy time and life really wasn’t much fun for me, my family and I suspect the staff looking after me in hospital. In 2007 I was asked if I would consider total parenteral nutrition (TPN), I was concerned knowing that despite the advantages there were also risks but after discussion with my family I knew it was the right (and I suppose the only sensible) option.
I've been on TPN ever since, with three nights on, one night off. I have 2600 mls of fluid over twelve hours at night. Initially via a peripherally inserted central catheter (PICC) or a Hickman line, but in 2010 I changed to an implanted port which suits me better as I can look after it without help and during the daytime there is nothing visible, as I remove the gripper needle each morning and insert a new one each evening and I’ve not had a single line infection since having the port.
TPN has enabled me to enjoy living again and despite my getting ‘old-ish’ (how my grandson’s tactfully describe me) I feel I can do most anything I choose to do – whether that is gardening till I drop, playing silly energetic games with my grandsons or walking my dog. I’ve even had several holidays abroad without too many problems.
Whilst on my TPN I use that time to work at my computer; I am editor of our church magazine and webmaster for their website. Each day is precious; too many have been ‘lost’ lying in a hospital bed thinking ‘woe is me’. There are however still times when things aren’t so good and I don’t feel at all well, but the improvement in my nutritional status has given me the stamina and inner strength to cope with adversity and not dwell on it. Of course none of this would be possible were it not for the ongoing support I get from the hospital nutrition support team and the staff involved in my care. A significant amount of time, effort and NHS resources have been invested in finding ways to improve my quality of life and it is up to me to ensure there is maximum return on that investment - so I live life to the full. I may wear away, but I surely won't rust away!
My one wish: I know there is a view that the wider world needs to have its awareness of the fact that some people rely on artificial nutrition and the implications of this regime, but I’d settle for a forum to raise the awareness to all health care professionals. I am often quite dismayed at the poor level of knowledge and understanding that many doctors and nurses outside the GI ward appear to have regarding TPN; the problems encountered by home parenteral nutrition (HPN) patients and the aseptic procedures.
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