A New Chapter



Where to start?

Well it's been a while since I sat and spent any time writing and as usual lots has been going on. Last time I wrote I had just started taking Pregabalin for pain and Refaximine for bacterial overgrowth which had been recommended by the team at Manchester. I'm now on the full dose of Pregabalin and have finished the course of Refaximine yet I'm still having big issues with pain and feeding.

The IV therapy has been keeping me afloat for the last few weeks which has been helping me manage while I wait for a better long term solution. I have rubbish veins though so it has meant repeated jabs into veins that are already scarred from overuse. They are really good at the unit though and they have been keeping a close eye on me. I wasn't so good when I went last week and they had a Dr up quick sharp to come and see me. To put it politely, I hadn't "been" for 6 weeks straight. I had spoken to my gp about it but their opinion was that I wasn't getting enough feed to cause a build up so not to worry. I don't know why they don't listen to me but hey who am I to know my own body? The Dr I saw on the unit was much more sensible and prescribed me some phosphate enemas to take home. It was really hot that week and I had not been tolerating my feed so he suggested that I switch to water through my pump instead.....if you have read my earlier posts that statement will make  you smile! I only have bags of feed at home and no hydration bags so I followed a good friends recommendation and cheated. I emptied a bag of feed and sterilised it with milton then filled it with cool boiled water from the kettle...probably not in the handbook but like I said, it's been an issue for a while lol.

I have been emailing back and fourth with my consultant over various matters but mainly I wanted to know what was happening about my referral to Newcastle. I don't know quite what the situation was but the plan changed and I'm now under another specialist (yes another new one) in Leeds. I was expecting a long wait to hear back from them though because it usually takes forever for an initial consultation. I was pleasantly surprised when the phone rang on Wednesday and it was my new consultant. She was very nice and I didn't have to explain too much which is always good. She was initially thinking of admitting me for assessment but after discussing the feed rates she decided that it was no good waiting for me to loose any more weight than I already have and that she would try and get me in for a Hickman line (a tube that goes into the artery near the heart) straight away so that I can start TPN straight away.

She called me late on Friday evening to say that I would be going in on Sunday and I would be getting the line put in on Tuesday. She then told me I should expect to be in for about 4 weeks for them to balance the feed and teach me how to look after everything and be safe! While it is a huge relief to know that it's all going ahead and I won't be waiting, I'm also pretty scared. Not so much of living with it, because I'm sure ill get used to that like I did with the jej feeding but having a tube in my chest? Squeemish! I probably didn't do myself any favours but I have nursing in my blood and I like to know everything so I watched Dr Hickman's video of how he places them.....yeah, that wasn't such a good idea!  I would have found it fascinating a couple of years ago, but when you know that's what's gonna happen to you...hmmm. Maybe that's why I'm sat here at 3:30 am talking to you guys!

Anyway all joking aside, I'm positive about the whole thing and I'm sure it will give me some quality of life back that I have been missing for so long so onwards and upwards and I'll catch you all soon xxx







Comments

  1. flo(disabledmedic)10 June 2012 at 10:08

    Pleased to hear that you are feeling positive, I haven't commented before but I've been reading for a while now =] Take care love x

    ReplyDelete
  2. Anonymous10 June 2012 at 17:51

    Well, Minxie, sounds like you have had an interesting time. It's great that they got to you so quickly!! Wishing you the best with the line and the long hospital stay. Big hugs.

    ReplyDelete

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