While not being able to eat or drink is bad enough, it's made worse by my doctors' expectations of a totally dependent patient instead of working with me to empower me to be independent. My new button did not even last a month.
Good think I'm not bashful. Just had to share my frustrations and only the OCF family could appreciate this email I just had to send to the Director of CCC Interventional Radiology department with a cc to the Patient Advocate.
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I hope that I do not become a monthly correspondent and patient, but the Mic-Key low profile button IR installed on February 9th had its balloon burst Friday night. I called this morning and got an appointment for 8 am this Friday March 8th. Since the button needs to be special ordered [16 FR 3.5cm], would you please make sure that is done. Also I have two other requests: follow up on getting me to independence and having your doctors consider ordering a different brand of button for this Friday.
In response to my request below that IR help me become an independent patient, last month Dr ---- assured me that for my replacement button, I would not have to go into the surgery room but instead he or Dr.--- would just change it at my bedside in the patient pre-op room so that my wife could see how it was done. That way I can get the buttons directly from my medical supplier along with my other enteral nutrition, syringes, etc that i need to live and change them as needed. I hope I can be accommodated on this visit.

I'm not a doctor so I would appreciate having a doctor look at these claims by a manufacturer that their product would be better for me than the Kimberly Clark Mic Key brand. I'm not too troubled since the very first G tube IR put in back on March 6, 2009 also did not last a month before its balloon burst. That time, IR switched my brand of tube from Wills-Oglesby (Cook Medical) to Mic (Kimberly Clark) which did last longer. AMT's web site claims that when comparing their Mini ONE� balloon versus the Mic-Key� balloon", theirs causes less granulation tissue, less leakage, better fit and much much longer balloon life before it bursts. Here are the links. {Redacted ]

If they do decide to order the AMT, please be sure it is the Mini and not the classic since the mini takes mic key extensions and is the "improved version" with the purported benefits. the sizes are supposed to be the same.

So, please have your doctors decide what brand button would be best for me, order it, and I'll see you all early Friday morning to get my 10th tube installed. (Too bad that IR does not have a punch card with buy ten, get one free)

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Charm