Tuesday, September 11, 2012

Inspector Gadget Parts. Malfunction.

I tend to joke I'm an Xmen (since I have mutated DNA) and that my weird medical devices are my inspector gadget parts. Go-go-gadget automatic IV Line. Convenient? I'd say so.The next day I have off from work that I don't have school I am going to make my appointments for that day. I just hope it is within the next few weeks.

You may remember me blogging a couple weeks ago about some problems I have been having with my mediport (automatic IV line that is in my chest) and my g-tube (my stomach feeding tube). Well I need to have a surgeon look at the G-tube to see what size I need to put in. Dr.B thinks the one I have may not be the right size.  Which, I'm not looking forward to changing it again, BUT I get the new style tube (the mini) which is smaller and thinner, so it is easier to hide under a bandaid. I'm looking forward to not taping gauze around my G-tube anymore. Its really hard to hide that sometime and it is impossible in swimsuits. Plus, scraping off tape marks everyday doesn't equal fun.

I know I shouldn't be, but I am a little self-concious about it. But I know how much I need it, since I can tell a difference in energy on nights that I do my feeding and nights I don't. So I keep it in. It's just smarter for me. But now I will be able to hide it and no more GAUZE! YAY! Excited!

And my mediport has been hard to flush, so I need to have them put TPA through my mediport. I have never had this done before, I'm a lil nervous, since I'm allergic to so much. But if i have an allergic reaction I have faith in the staff. I have to go to an outpatient lab at St. Alexis (first time ever at that hospital, kinda of excited to see what it looks like). However, I've had my mediport since 1996. Most ports are lucky to last even 6-8 years. I've had mine for 12. I tend to baby it. I don't use it for blood draws, only long term IVs that I have to do at home (mediports are great for hiding needles). I can go to class, perform in musicals, do anything with them (well except swim) :-).

But this means my mediport doesn't do "blood returns" well. I'm okay with that. That is why I have arms and I don't mind nurses not getting mine on the first stick ( I know my veins are tiny). My arms are great learning tools  :-) However, fingers are crossed the TPA works, so I don't have to have surgery to replace my mediport.

Not gonna lie, haven't had a surgery since 2003 and I don't want to pick up the "habbit" again. Plus, anesthesia and I don't mix well. Since I'm a new hospital I have to hope I get a surgeon as talented and sweet as Dr. Vagunta. He placed my mediport perfectly (nobody even knows its there) AND all my scars all smooth thanks to him.

So next day off I have in the next 3 weeks, I'm driving up to Chicago and getting everything figured out! Ready to have it all fixed! Can't wait!


  1. Well, I can vouch for the not knowing all this stuff was there. I didn't notice any of it at all. I honestly thought (before reading your blogs) that your enzymes and stuff were just syringes like diabetes. This is John btw. Strange it doesn't let me comment as a Facebook user.

  2. You are such an inspiring lady. You take CF lightly and you grace well with life. The advent of such medical device is extremely beneficial.

  3. John, thanks. Yeah, I try to conceal it for the most part (so people don't give me weird looks). but if I'm open to sharing about it for sure. I'm not ashamed I have a feeding tube or mediport, just I don't know what others think.

    Heidi, Thank you. All the new medical devices are extremely helpful. Cf makes life interesting, there is never a dull moment. I don't mind it and besides if I can do well, then maybe I can help others who are younger learn to do well too.