I know it's sometimes hard to do but I think you're up to it and that is have a serious talk to your RO and also tell him that not having a dietitian in a Head and Neck practice is the dumbest thing I've ever heard of.

He has a dietician, but she is not on my network. How dumb is that? I do not know if it is a stinking insurance thing or a practice thing, but it sure is stupid if you ask me.

Deb

Unfortunately even going to a Comprehensive Cancer Center does not guarantee getting decent advice and guidance on a PEG, let alone diet & nutrition. My experiences at the Lombardi Cancer Center at Georgetown with the PEG were so horrific I had to get the Patient Advocate involved as I did not want what happened to me to happen to others. Thank you for the support.
Charm

you're going to need a dietician to evaluate your nutritional needs as you go through treatment and to determine how much supplements you'll require. So your insurance company will need to cover at least one visit.
To secure the PEG, we used either an ace or kling wrap, tape caused all kinds of rashes.

I know, and was told I had been referred to another agency, but I have not heard anything.

Angelia,

What do you mean not on my network?

I have an HMO insurance company. If any of the people working with me are not providers for my insurance company it is considered not in network.

I used the tip in the shorts method when I had a full tube. I now have a button and it solves the problem nicely. BTW, I should have been checking this list daily and forgot it after first joining a couple years ago. After living on a g-tube fo 12 year I have learned a few things. Under served is an understatement. Thanks to a g-tube list http://listserv.syr.edu/scripts/wa.exe?REPORT&z=3
I learned most of what I know. Most members are moms of kids with tubes but there are several of us adults. Check out their archives.
I promise to check in here on a regular basis. ClarkG

IGNORE THIS MESSAGE - I FINALLY FIGURED OUT YOU NEED TO REGISTER TWICE, FIRST AT SYRACUSE THEN SEPARATELY THRU GTUBE
LOOKS VERY VERY INTERESTING. I have been unable to access the g-tube list from this link. I even registered my email address and got a confirming email on my password being registered from Syracuse but that only brings up university lists. The g-tube listserv keeps telling me I am not authorized to read the archives or see anything.
How do you get on this g-tube list serv. Your link probably works directly for you because of the cookie you have but it just blocks me.
It is looking like I will be on a g-tube forever so I am very interested in finding some more help.
Thanks
Charm

Re tube: I was given some gauze pads w. slits to put under the tube. When these ran out I just cut as slits in regular gauze squares. I tucked them under the tube and taped them to themselves as I also had reactions to the adhesive tapes. If I didn't have to be in public I wore gowns and just lifted them up for feedings or used snap up model coats and zip up robes. Other wise I wore skirts w. elastic waists and either let the tube dangle outside w a long shirt or jacket to cover it or tucked it in and only took it out for "feedings."
RE "not in group": There is more advice in the insurance forum but will say here that it is best to call your ins and also write that you are trying to keep all your cancer related care coordinated at one facility. There should be some type of help available in the hospital for this.