What is inside my pink rucksack?

When I was given an option of which colour rucksack I wanted, obviously I chose the pink coloured one over the navy blue and black colours. I also asked for some wheels with it.

Inside the rucksack, I was to place something called a Total Parenteral Nutrition (TPN) bag and my Micrel Mini Rythmic™ PN+ pump. I was put on this after I spent 3 months in hospital post-surgery suffering from high-output which was depleting me of vital electrolytes from my system. TPN was replacing them just about at that time along with additional IVs of magnesium and potassium. I was constantly eating. The reason behind this was that I had a newly re-fashioned (yes, this is a medical term) ileostomy after an emergency admission which was literally pouring like a tap!

Birds eye view of a used dressing pack and everything else used. Amino acid solution bag inside my pink rucksack while running through the pump and connected to me.

Previously I have been on TPN in the hospital when eating anything by mouth would cause me horrendous pain so it was used to replace what I couldn’t eat and to supplement what few bites I very difficultly did manage. On this specific admission, I was initially started on TPN whilst in the hospital and then I was transferred to a hospital in Oxford who decided that I was to go home on it in order to gain weight and replace electrolytes lost through my output. During this admission, I was also given a Hickman line. A Hickman line is a catheter which was inserted into the chest and tunneled under the skin, it sat just above my heart in the superior vena cava, with an exit site over the upper chest. Stitches were used to secure the line which was supposed to be removed 2 weeks later but were actually removed 2 months later on the agreement of the nurses. Then a dressing was placed on the exit site and I was sent for an x-ray to see if the line was in situ which it was so it was okay to start the TPN.

I was given training whilst in the hospital while everything was set up by the homecare company from their side. Once everything was ready and in place, I was allowed to go home. Finally after 3 long emotional months in two hospitals.

The next day I was woken up by a phone call from the nutrition nurse asking whether I had received my delivery I said no because no one had woken me up plus I couldn’t hear anything out of the norm. So, I went downstairs and the living room floor was full of cardboard boxes and a large medical fridge occupied the corner of the room where the TV unit once stood. My dad being a gentleman that he is, he spent his morning putting everything into place and clearing up the mess. Allāhuma bārik lāhu. So, I informed the nurse who’d already found out by now.

I would connect myself to the TPN at home in the evening at 8:00pm and it would run over a period of 12 hours overnight. Then I would strap it into my pink rucksack like a baby! It had to be placed in a covered bag because it needed to be protected from the light. I was using it 5 nights per week which consisted of 2 lipid bags (nicknamed milk bags) and 3 amino acid solution bags (nicknamed apple juice). Once connected I had to take it wherever I went. It went into the bathroom with me, it propped up next to the wall when I prayed and it sat on the chair next to me when I ate at the dinner table. The experience I least liked was whenever I had a leak from my ileostomy. It was quite a challenge getting out of my clothes as I couldn’t disconnect myself. Being challenged like this at 3:00am in the morning is one way to be fully woken up.

Living life while on TPN can at times be a challenge, speaking from experience I had to be home for 8:00pm so I could connect myself to my medication. This limited my social life. By all means, I was able to go out with my TPN bag which is why I was given a rucksack, but I preferred to stay at home because my shoulders would start to ache from the weight of the bag. At home, I could just place the rucksack on the floor and relax. When the machine started beeping at 7:40am in the morning and I wasn’t ready to get out of bed was the worst of all the factors.


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