Tuesday 22 March 2011

PEG

As some people know i am getting my PEG put in on the 29th and i am bricking it about the procedure!

I was also before bricking it a lot about the afterwards part of the PEG and i was worried that it just wouldnt work for me and would have been a waste of my time.
But ive just seen the perfect video on youtube about a girl who had a PEG put in, it wasnt about the procedure bits, it was about the "afterwards" parts, like the weight gain, the being even more body conscious, things like that. But watching that video has settled me a lot now about it all. I deffinetly feel like im doing the right thing for myself by getting this PEG done. I keep sitting here, when im meant to be doing coursework, and thinking about all the benefits i will feel and even see hopefully a few months after the PEG has been in use with me. I will be a bit weightier, i should have more energy, i should have a bit more colour in myself, i should fit my clothes better! Hell i might even need to go shopping eventually for new clothes if things work really well!!

So i do still feel like i was really pressured and forced into having the PEG done, by CF and by my dietician putting the pressure on me constantly about gaining weight and my drops in lung functions from not having the energy to fight infections etc. So im still pissed with her about it, but i dont think there will ever be a time when a CFer isnt pissed off with their dietician from things ive heard/read!
But i dont think that i will be making the wrong decision. I mean when she first mentioned it all months ago i declined outright, i wouldnt even hear of how well it worked for other patients or anything about it. Point blankely refused to listen to her about it. But when i was like that i still felt a part of me wanted to know how it all worked and that it could be my answer and bit of help for taking this great pressure of "you must eat more" off my shoulders. But i didnt want to show weakness and give in and ask about it. It was stupid!
With me, approching subjects such as the PEG and the Port and what i consider for me in my life to me to be a pretty huge deal, have to be done delicately, otherwise i just shut down and wont listen to you. Its my stubborn streak coming out in complete force, ray guns included! I feel like they are telling me that i cant manage on my own, that im failing on my own and that i need the help. And even tho part of me is yelling inside saying "yes, help me! please im struggling so much here i cant stand it!" i ignore that and stamp my feet saying i can do it on my own, i can take care of myself and im not failing and dont need the help. Its part of the reason its taken me so long to make the decision to have this PEG done, where as with the Port it was me who approached the Dr about it. Albeit just asking for information about it as i didnt know what it was, and he ended up saying its a route we needed to start thinking about. But it was an easier decision to make for me as it was me who brought it all up, it was me who opened that door and started walking down that road. It wasnt me who brought up the PEG.

So now ive gotten a lot better about the "afterwards" parts of having the PEG, i just need to figure out how to feel better about the procedure. I dont like how they do it. Ive not had a local before or sedation. They said i wont remember it as the sedation is from the same family as the date drug Rohypnol(sp?). But im worried that the local wont work and i wont be able to communicate that im in pain. Something like that is really worrying me, i dont know what the chances are exactly of that happening really, i asked the nutrition nurses about it and it was like she just thought it was the worlds stupidest question to ask! All she said was that it will work and they will check. Yeah like that totally settles me. Not. The psychologist is meant to be coming to see me the day before i have it done as she knows how scared i am, so hopefully she can give me some techniques to calm myself down or something.

2 comments:

  1. I don't have a PEG so I can't be much help in that department but I have had lots of sedation/procedures under sedation. Last one was 18 months ago for a bronchoscopy. I told the dr I was petrified and she assurred me I'd be knocked right out. She kept her word and I remember absolutely nothing!! I think they used midazolam but I can't remember for sure. They will check that you are out of it before they do anything! My dr and I also agreed on a hand signal if I felt anything (not that I would have needed it but it made me feel better!) perhaps you could suggest this to the team looking after you? Apparently I talked the entire way through and my nurse was trying to tell me shut up but I laughed at her. I remember waking up needing the loo, getting out of bed and walking straight into the wall because I felt so drunk on the stuff! They will look after you. They've done the procedure a million times before.

    I know what you mean about the stubborness! If I don't suggest something but someone else does I won't do it! haha!

    Let me know how it goes! I'll be thinking about you! xxx

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  2. Hey Gem, thank you this helped me a lot! I never thought to ask people about their experiences with sedation, ive just been asking people about the PEG and what its like to have one lol. The hand signal idea is good i like that, and just might have it in place, like you to make me feel better its there if i need it. I do think that im probably blowing things out of proportion in my head but with not knowing fully what to expect its easily done i think lol...
    I think a strong stubborn streak is in all CF patients, must be something to do with the gene or something :p
    Ill post a blog when im able to about how it all went, thanks lots :) Hope your okay! xxx

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