Friday, October 8, 2010

The latest GJ-tube news

After talking to my dietician this morning, there is still some confusion on our next steps. She had forwarded me my GI doc's e-mail, and he wrote that he can advance a J-tube through the existing gastrostoma, but it would have to be a balloon-type transgastric J-tube. Because this does not entail a new operation (in the sense of having to make a new stoma) this is ethically acceptable. Furthermore, he asked her if she could obtain a balloon-type transgastric J-tube.

The thing is, officially, there are no balloon-type transgastric J-tubes available in Austria. I have already e-mailed two Kim-berly clark distributors in Europe a couple weeks ago, both never replied back. I have also asked the medtech firm that imports my AMT button to find out whether they can order a Mic-key J-tube for me. I have heard from them once 10 days ago that they were going to tell me last week....

My dietician is contacting Nutricia today (they distribute the Mic-key G-button in Austria), and I have e-mailed several Kimberly Clark digestive health partners within the European Union. Of course now the waiting game begins again. It is Friday noon, have not heard back from anyone, therefore assuming that this is it for the week.

If we are able to order a low-profile J-tube, we will still have to get approval from my insurance company....

The next obstacle is whether we really want my gi doc to place the j-tube. Yes, I would have needed him for the JET-PEG, but the way it sounds is that he wants to not place the j-tube endoscopically but do it blind-style??????? No fluoroscopy, no endoscopy, just pushing down that tube - that sounds lovely!!!

The thing is, one of my best friends' Dad is an interventional radiologist, and maybe I could get him to place the tube fluoroscopically? (and maybe with sedation???)

Sometimes I am still wondering if it's worth the fight. I mean I know it is, but shouldn't everything being going a whole lot differently for me?

I am leaving Vienna in a couple of hours to visit my parents, and I have decided to take a computer-free weekend, no researching for tube options, no checking my e-mails ....

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