Day 4 - Carpe Diem
My name is David and I’m from Aberdeen, Scotland - this is my story
In March 2016 I was diagnosed with Short Bowel Syndrome. I was admitted as an emergency to A&E, where it was discovered I had suffered an ischemic bowel due to a complex internal hernia. As a result I lost 150 cm of my short bowel. In surgery they created an ileostomy, which can be fun and games, with my stoma output reaching up to 3 litres a day.
I was in hospital for three months as I had contracted c-diff, which contributed to my high stoma output and hindered my progress. I was started on St. Mark’s Solution in place of water to help replenish all the salts I was losing. I managed to live with short bowel syndrome for a year unaided. However, due to my malabsorption, which led to weight loss and often deranged magnesium levels, the time had come that I needed medical intervention.
This is when I was introduced to parenteral nutrition. This was a decision I didn’t take lightly and after much discussion with my family I decided to start my journey with home parenteral nutrition (HPN). I live by the mantra ‘carpe diem;’ Latin for ‘seize the day’ and that’s exactly what I planned to do even with HPN. Being on HPN was initially described to me as something that could be life changing and restricting. It has been life changing for me but in a positive way as it has given me the strength to continue living my life to the fullest. I was initially on six nights a week of PN via my Hickman® line but after discussion and assessment it was agreed with my consultant that I could reduce to four nights a week of PN.
Prior to becoming unwell, my wife and I were committed cruisers and I thought those days were gone. I am very pleased to say I have just returned from my second cruise with my wife and family. I was a HPN newbie on the first cruise and had just been stabilised on my prescription for twelve weeks. On our 17 night Baltic cruise we visited Copenhagen, Denmark, Stockholm, Sweden, Helsinki, Finland, St Petersburg Russia, Talin, Estonia, Ronne, Denmark, Wismar Germany and finally Amsterdam. Not bad for 85 years young!!! This required some organising to be done as you can imagine! However, not enough to put me off booking my second cruise post HPN to the Mediterranean, earlier this year. We visited France, Spain and Portugal. (My new PINNT medical tag came in handy.) The assistance given by Lloyd’s Pharmacy was first class and made the process seamless. Margaret and I make the most of my nights off PN and like to go out for meals and nights away.
My granddaughter provides all my care twice a day and we are joined at the hip. I run a very fine line of hydration and can become overloaded with fluid easily due to my congestive cardiac failure and also have to be conscious that I don’t get dehydrated due to my high stoma output. Our life styles have both changed but we have adapted, and HPN has made us closer than ever.
DUM VIVIMUS VIVAMUS - WHILE WE LIVE LET US LIVE