I am a 41 year old mum to a five year old boy. Prior to becoming unwell I was a Director in the NHS, a career oriented individual with lots of energy, and with hobbies to match - hill walking, kayaking, cycling, swimming. Fit and active, this all changed two years ago. I am now permanently bedbound at home with a full care package. But hopefully starting total parenteral nutrition (TPN) will be the kick start I need to begin my long road to recovery.
I have Ehlers Danlos Syndrome (EDS), which has caused gastroparesis and dysmotility, and I also have postural orthostatic tachycardia syndrome (PoTS). These conditions have led to quite drastic changes in my diet. There are many foods and food groups I cannot eat, and only then in very small quantities.
My problems began in August 2012; I started on TPN very recently, 9th June, after having lost over five stone in weight. I am now on TPN at home, but have only been home two weeks and am currently having Bupa nurses managing my TPN.
Obviously it is very early days for me, but even now, after a short period of time, I have put on some weight and am feeling stronger and more 'with it' in myself, although I am currently struggling to come to terms with the reality of having the TPN at home, the permanency of it and the impact it could have on my life. I am hoping that being a member of PINNT will help me to come to terms with this.
My one wish: It would be helpful if the nurse visits were more predictable with regards to time, and getting hold of someone to speak to at the hospital has been a real problem. Leaving messages all the time and not getting a return phone call, having to chase this up and still getting no positive help. Makes you feel quite isolated and abandoned.
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