| Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2010 Posts: 72 | It was a very long, agonizing and excruciatingly painful endeavor, but with great effort and patience, I was able to get Tim to take his shirt off and lay flat on the bed. Ninety seconds later he was in the dining room �eating� breakfast through his new tube, a mic-key button type. He�d had this tube, his second, for nine months. (His GI doc said he could wait that long even though the manufacturer suggests 3 to 6.) The balloon was fine, but much of the water had evaporated. The instructions suggest testing the balloon and topping it off monthly, but Tim would rather not. In fact, Tim would rather just wait until the tube pops out on its own � like last time. His first button lasted 18 months!
Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments. | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 |
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Feb 2009 Posts: 22 Member | Member Joined: Feb 2009 Posts: 22 | Good for you and him, certainly faster than a doctor or hospital visit. I have two questions, do you think a person could do it themselves and where to you buy a replacement? Any information appreciated. | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Susan
Congratulations. I speak from experience when I say that It is a great feeling for a patient to be able to have their caregiver change the button rather than the expense and hassle of going to the hospital. You rock. Tim is a lucky man. What brand of button does Tim have? My Mic-key (Kimberly Clark) button's balloon burst after only three weeks and fell out. I did some research and had the doctors order me an AMT (applied medical technology) button and they walked my wife through the procedure with her actually changing out the button herself. It will be three months in two weeks that this button has lasted. Of course there had to be a hassle: my medical supply company would not order AMT only Mic-Key so I had to switch companies and there are still insurance issues etc to resolve out. Tim is setting records with how long his buttons last. The manufacturers only warranty them for 30 days. Typically buttons last 3 months and tubes 6 months on the average but a lot depends on the stomach acidity. So I am curious as to what brand Tim is using. Charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2012 Posts: 1 Member | Member Joined: May 2012 Posts: 1 | Good for you !!:) awesome
Ally
| | | | Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Aug 2010 Posts: 72 | Tim uses the Mic-Key button type tube. It lays almost flat against the body and uses a removable extension tube. Once the hole, or stoma, has been cut and healed changing them is amazingly easy. Even the patient should be able to change it without help. I mistyped above, Tim�s first tube only lasted 15 months before the balloon gave out. The second one had lost much of the water in it due to evaporation, but the balloon is fine. I tested it by refilling it and letting it set on the counter in the bathroom. Yesterday, three days after it was changed, one of the terrier-ists was able to stretch up and snatch it. I found it after he had used it as a chew toy, having chewed off and eaten the feeding port cover � and the balloon was still intact and not leaking! In my experience these things are nearly indestructible. Which leads me to wonder what the heck have you been doing to them, Charm? The water can evaporate and the instructions suggest checking it every month. If the balloon is failing then perhaps you are using an oil based lubricant or petroleum jelly? Maybe all the tannins you pour through it? Or all the acid that builds up as you force yourself to be so charming At least you finally found one that works for you even with the supply problems.
Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments. | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Susan
Nope, the doctors never used any lube of any type just water. According to the doctors, my stomach is as stubborn as the rest of me and simply refuses to let the silicon balloon alone but works hard to digest and dissolve it. When they removed it. the balloon is a brown gooey mess, half eaten away and just smears apart when touched. The combination of the digestive juices and constant stomach contractions are just too much for that little balloon to bear. Even Medicare allows a balloon change every three months since that is already two months past the manufacturer's warranty. The AMT balloon is thicker and apple shaped plus more able to withstand the stomach contractions than the Mic-key so I am hoping to at least go the standard 90 days. For what it is worth, now that I have had both a Mic-Key button and the AMT Mini one button, the AMT is even smaller than the Mickey. with a lower profile, and lays even flatter against the skin. Seriously, you should contact the Guiness World Book of Records to see if Tim is the Champion of Tubers. I've never heard of anyone who actually uses their tube daily have one last so long. Charm
Last edited by Charm2017; 05-31-2012 06:13 AM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2005 Posts: 7 Member | Member Joined: Nov 2005 Posts: 7 | I haven't replaced a button but I have replaced tubes a couple times. I just lay as flat as I can (in a recliner), deflate the balloon, with two fingers hold down the area around the stoma and pull it out. I have new one already set up with some lube and the syringe with water at hand. I just pop in the new one, fill the balloon, slide the keeper (only on a tube) and I am done. I don't see why doing a mic-key would be any more difficult. I am trying to get a Bard button because they last for years -- have had two. One for 5 years and another for 4 years. They do have to be replaced at least in a doctor's office but the lack of constant replacement is a plus for me.
ADMIN NOTE... Do not attempt this procedure without the guidance of your physician
Last edited by ChristineB; 06-23-2012 07:55 PM.
DG squaomous cell carcinoma in neck tongue and palate 4/98; T4N2CMO bi.lat. neck disect. 7/98; Max dose Rad 8/98 to 9/98. H&N Cancer free. G-tube placed same time as disection. Changed to button after 2 years.DynaWrite Severe trismus and unable to speak clearly. Use an iPad .
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | A word of caution regarding doing these types of procedures at home. There is a risk of infection involved. This must be done with the guidance of your physician. In order to be changing your own tubes, your doctor must teach you how and explain all the steps. So many variables make this something that the average patient would never be doing.
For example, my tube is a J/G combo tube. This needs to be surgically removed and replaced with a couple stitches made internally to hold it in place. One part of my tube goes into my stomach and the other into my intestines. I get this done about every 2 months as it wears out very quickly. Its uncomfortable and sometimes even a bit painful. I get this done as an outpatient with lidocaine used to numb my abdomen so its not so painful. It takes anywhere from 10 to 25 minutes depending on how easily the doc gets the new tube placed.
****For safety reasons**** I felt it important to clarify within the tube changing thread to make sure everyone understands this is not something very many OC patients will ever do. Charm and his wife are an exception and in my opinion not average patient and caregiver. I do not know 0978cg well enough to comment on their patient experience with feeding tubes. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Kris has a PEG, currently the long pendulous type. He had it changed during our last appointment at Auckland hospital 2 weeks ago. They were going to change this to a Mickey type but did not have the correct size at the time. They told me that if I felt able I could change this myself. They showed me how to do this, and they will post out to us the Mikey when it arrives. So, I will be changing Kris 's tubes in future. To me it looks easy and I am a currently practicing Registered Nurse. Although they did not know that . So, with a little bit of trepidation, I plan on changing Kris's PEG soon.
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
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