Sunday, 20 May 2012

When your normal changes

Apologies for the absence, this post follows on from "Here we go again".  The PEJ was no better than the surgical jejunostomy, but the consultant on the ward wasn't particularly helpful and discharged me on the Friday, I saw my own consultant on Tuesday and he decided I needed admitting to get this sorted.

I finally got a bed on Wednesday night, and have started TPN. TPN is Total Parenteral Nutrition, which basically means that I am fed directly into the vein, avoiding my digestive tract completely.  This is a big step as it comes with many complications such as line infections, liver failure, blood clots. About Parenteral Nutrition.

I start my training on how to administer my treatment myself on Monday. As I had trouble with infections around my jejunostomy, I'm very conscious about the greater risk of infections with a central line, so I want to be administering it myself as soon as possible. The less people that touch the line, the less chance of infection. I've been told it's best to do it myself as the skin flora is common to you already so it reduces chance of infection.  I met up with some people from PINNT yesterday, which was fantastic timing so I could discuss with them the pros and cons of a Port v a Hickman line. The main appeal of a Port to me is that I can go swimming, which would be fantastic as I miss swimming greatly and it would be great for cardio training- you may gather that I have a one track mind, most things revolve around my ability to row and train!! I know some people swim with a Hickman, but again given the problems I have with my Jejunostomy and infections I think it would be riskier to have a Hickman.  It's also not going to get in the way when I'm doing exercise etc.. I know some people who manage it with their Hickmans, but I'm going to give a Port a go as I think it'll suit my slightly bizarre lifestyle better!!

I'm hoping to get my Port fitted on Tuesday. We have a fantastic unit here, the Vascular Access Unit, which primarily puts in various lines for all sorts of medical conditions. The sooner I get my Port the sooner I can get home :)  I've set a deadline of the end of the month as I have to go away the first weekend of June.  I've already been told that I'm mad going away so soon after getting out of hospital with a new way of life, although in many ways it's very similar.

My main concern is how I'm going to get my medication as pretty much everything goes through my tube, so my team need to do some thinking about how they're going to get around that.  Although I'm looking at the benefits. I was on jejunal feeds for 24 hours a day, and will be halving that, which would be nice.

So, my normal has changed again, which is kind of what's normal for me. 

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