Day 4 - Home parenteral nutrition – does it dictate your life?
No, it most definitely does not, let me tell you why. This is my story.
I am 27 years old and was diagnosed with intestinal failure in 2017; prior to this I had been suffering with bowel and gastrointestinal issues for around seven years. During that time I had been in and out of hospital having several investigations and surgery; each time it had worked for a short period but after a few months I was back to square one again. After each operation I was put on total parenteral nutrition (TPN) as part of my recovery but it was stopped when I went home. I should mention here that in 2014 I started studying to be an adult nurse at university, so I was juggling this with being poorly, which involved several stays and trips to hospital. In 2018, after my local hospital declared they were not sure there was anything else they could do for me, I was referred to a regional specialist intestinal failure centre. It was not an easy ride from that point on, I underwent even more tests and, in 2018, they inserted a Hickman line and sent me home with parenteral nutrition, I was completely devastated, I was 23 years old, why was this happening to me? The line meant I was not allowed in the swimming pool, could not go to a spa, and couldn’t soak in the bath, all things I loved to do. All I kept thinking was ‘what am I going to wear, everyone is going to be able to see it, what happens if I catch it, this is going to stop me doing everything I wanted’. After this my mental health dipped and I struggled to come to terms with having this line and being attached to a feed every night for 14 hours and the fact that my health was controlling my life.
But after a period on a nursing placement, which I loved, I realised it does not define me and it does not dictate my life. In September 2018, I graduated as an adult nurse and started a job I only ever dreamt I would do. I still had my Hickman line and was still on PN, but the hospital had taught me how to do the line care and administer my PN overnight, which made it easier.
I met my partner at the beginning of 2019, something post-diagnosis I was too scared to even think about. Now we regularly go away for long weekends and week-long holidays in the UK, but the PN doesn’t get in the way of this; we just pre-plan and get organised making sure we have everything I will need, whether that involves contacting hotels, arranging delivery elsewhere or ordering extra supplies.
It’s now 2021, I am currently completing a Master’s course to become a health visitor, alongside this I horse ride, do regular babysitting, fundraise for local charities and have been helping on the Covid vaccination programme. I still manage to spend quality time with my friends and family who have supported me endlessly. I have also learnt how important self-care is, so each month I treat myself to a pamper session; I go and have my nails done, a facial and a massage. This is important for me - it is time for me to reflect and think about myself, something I believe we should all do. So, when I said, ‘does the PN define me?’ yes, of course it does, it’s something I must live with and think about daily but – no - it does not dictate my life. When you put your mind to something you can do it - I think I am living proof of that. Under no means am I saying that every day is perfect and great because it is not - I have days when I am exhausted and need to rest but when things are good, I make the most of it and live life to the maximum.
My one piece of advice to anyone is to set yourself goals each day, it really does show yourself that you are achieving and can do it.