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.
[quote]
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)

[/quote]

Charm

Sorry it didn't work. Sounds like a great, knowledgable letter. You probably know more about it than they do! Good luck this Friday. Meanwhile, what are you using?

Oh boy! This is serious! Can it be used at all? How are you going to go a whole week with your tube not working? I would think this would be considered an emergency. Even if they have to order it, they really should be able to get you in there earlier than Friday. Please make sure you take care of yourself. Ask your doc for a referral to get daily hydration. You dont want to get yourself sick from lack of nutrition and hydration.

Christine & Kathy

I did not mean to alarm you because the balloon bursting is part of my new normal. Whenever it happens, I can still use the tube or button, but I just have to use bandaids and tape to hold it. That's all the balloon does, hold the tube/button in your stomach. I can still get all my Jevity and water and Vitamix down so I'm getting plenty of hydration and nutrition.
In reviewing all the emails I've sent to the hospital about this, the first year I did panic and insist it was an emergency, yet they still always made me wait about a week no matter who I called, including the patient advocate, so I just quit. The only exception they ever made was when my tube fell entirely out and I was unable to get it back in - they did see me that day reluctantly because I just showed up and made a major fuss that had Security involved before I calmed down. Funny, I did complain this last visit about having to wait a week every time, so they gave me a replacement long one size fits all tube although they forgot to give me the 6 ml luer slip syringe needed to inflate the balloon so I'd have to tape that in anyway also.
It's not as bad as some poor posters in the Oley Inspire forum or the blenderized diet forum whose balloons burst in two weeks three times in a row and the extra $200 co pay each time really hit them hard. I will probably switch the brand myself anyway if they don't once my wife is comfortable changing them for me.
I can't wait to become independent of them.
Charm

Phew! You really had me worried! Glad its still useable and will hold up for a few more days til you get the new one.

Charm,

Wow, you sure have had your issues with the "tube". Can anyone shed any light as to why these balloons keep bursting? You aren't stuffing pins and needles down that tube, are you? You'd think with all the technology out there that this would be a problem of the distant past. Anyway, it is a major inconvenience. I like how pro-active you are. Clark and I have found this works for us, too. When you as a patient ask for something specific and present the rationale for it, it certainly gets attention. And they know they are not dealing with someone with hayseed in his hair. I especially like you witty last line! How could they not fulfill your request!

Hang in there and keep making noise!

Anita

Thanks for the clarification! I was wondering....

As my dysphagia worsens, and weight loss has gotten to the point when nothing that I wore a year ago fits at all ( I look like a child wearing his father's suits), i have followed Charm's journey with great interest, thinking that at some point in the future I will be on a path behind him.

However I hope that I do not develop the pica behavior (google it) that Charm has obviously not told us about. I think that due to some mineral deficiency he has taken to this diet of inedibles� rumor has it that he has developed a taste for metallic objects with a special fondness for nails, screws, staples and pins. Of course this plays hell with the balloons. Buy 10 get one free sounds like a really good deal all things considered.

All joking aside, I think that one of the things about this disease's after effects is the constant "it's always something" crap that goes along with the treatments, which wear on you to no end. What next, and the numerous visits to doctors, the new symptoms, the new issues, and of course the issues that were not so bad, but are now getting worse, just beat you up. Charm's lack of whining about it all, but just a matter of fact manner of dealing with each thing in its course, is certainly to be commended.

Aww, Charm what a bugger! At least it happened to someone who could analyse the problem and apply themselves to the solution and not someone new and coming to terms with the whole concept of tube feeding. I can't imagine what Alex would have done if this had happened him at the beginning. We also questioned button vs "tail" but the hospital refused point blank to consider the button but never really gave us any real reasons. I assumed they had no contract with the button company and it was all too difficult to buy it in for short term (we thought) use.

With any luck, the new company product WILL be better and if not, make sure you swallow a magnet as part of your diet.

We watch your progress (and tenacity) with interest.

Karen
PS I worked with quite a few children with pica years ago - the worst being the one who managed to swallow a little under half a tennis shoe. Of course, she couldn't complete the job, necessitating emergency surgery and we never did find the other part of the shoe.

Charm, great letter. I hope it helps. And so glad to read that your sense of humor is intact - "buy ten, get one free". Excellent.

YES YES YES. The letter worked perfectly.
Just got back from the hospital where they had not only ordered the AMT button (which was difficult for them - they had to call three new distributors since MicKey is the regular one) but they also let my wife put in the new one while they watched.
I had prepped her last night with YouTube videos of mothers changing infants' tubes but she was still a little nervous.
Actually pulling out the old tube button herself and putting in the new one then inflating the balloon all by herself with the doctor just providing encouragement and commentary was just what I had hoped for. To top it off, they even faxed the prescription in to my medical supply company so I can get them directly from now on. (that's the next struggle as my medical supply house defaults to mic key (Kimberly Clark) also but if need be, I will change suppliers)
Like Hannibal Smith in the old A team used to say: [quote]I love it when a plan comes together[/quote]
Keep the Faith
Charm

Illegitimi non carborundum.

Good job, Charm!

Yay for you! Your perseverance paid off big time! So glad everything worked out the way you wanted.

Maria

Your post brought back memories of my high school Latin teacher (a nun)and her lecture that despite what we read or heard, "don't let the bastards get you down" was NOT a Latin phrase and even if it were, it would not be Illegitimi non carborundum. It sounds right and even has the gerund as a perphrastic of obligation According to her, illegitimi was not the Latin word used for bastards in a perjorative sense, instead it was spurii (if the father was not known) or nothii (if the father was known0. This phrase is the best example of Mock Latin that almost everyone thinks is real Latin, because they translated each word out of context.

Sort of like the mistake that beginning Spanish students make when they cobble together words from the dictionary and come up with "Como Mucho" for "I eat a lot" when in fact, it is an idiom meaning "How much" (does it cost?). Our Spanish teacher (also a nun) used to love telling the story about a woman in a Spanish resturant getting frustrated when instead of telling her the menu item cost, all the waiters kept smiling and saying Si. Si.

Don't mind my pedantry, but with 8 years of Classical Latin and Greek, I tend to get picky about Pig Latin & Mock Latin in popular culture. Plus it was a very good memory that I had forgotten.
Charm

Yay on the buttons!! Great job by your bride. I love when we care givers learn something new and get to DO cool things!!
Congrats on your perseverance.
Kathy

Yes Kathy, Anita, Maria, and Karen. The real heroine here is my caregiver wife. She, just like you and all the other caregivers here, put us patients to shame with your dedication, courage and fortitude. Christine has met Bev, my wife when we were out at the San Antonio Walk so she knows just how lucky I am.
I hope your care receivers know how lucky they are to have you all.
Charm

So happy to hear it all went ok today! I was thinking of you and wondering how everything turned out. Great work by Bev!!!! She did very well changing the tube. Dont think I could have done something like that. Thats why I always call caregivers, angels. They are made of tough stuff! Sometimes being the patient is the easy part.

Yes, I have met Bev in real life and she is an absolute darling!!!! We got along as soon as we met. It was like we had known each other forever, same with Charm. They compliment each other very well and make a perfect couple! Please tell Bev I said hello!

Charm,
I had to look up the spelling and found additional historical references in wikipedia - 'The phrase was adopted by US Army general "Vinegar" Joe Stillwell as his motto during the (first world) war.' as well as being in a Harvard athletic 'fight' song. My son, a UChicago grad, would use this as an example of Harvard's inferior academics. Glad it gave you a smile!
Maria

Maria

Thanks for both the memory refreshed and extra facts. Sister Stanislaus Kostka never mentioned Vinegar Joe or Harvard, instead she talked about the missing Est which should have been added at the end for the periphrastic. Of course there was no Internet back then, let alone Wikipedia.
Charm

Glad you're eating again! And the rest is all Latin to me... Or not...