Well, I guess more progress was made tonight. I just got 240 cans of jevity and did not even know it was coming. I still have yet to see a dietician about all this stuff. I am seeing the gastro dr. tomorrow and he is going to make sure it all looks good and make sure I am cleaning it right. For me it was just another reminder of what is yet to come.

So...did you get an invoice or slip of paper with the company that sent this to you...then you can call and find out who is handling this and see if they can also get you some supplies for your PEG tube, etc. Honestly, someone is really dropping the ball with no communication to you and no information, etc.

I know you are ready to scream, cause I am ready to scream.

Deb

240 cans ? WOW. I hope they were Jevity 1.5.
Angelia, You have totally validated my complaints about how badly we PEG patients are treated by the medical establishment.
Well, start taking that nutrition sister. But as DavidCPA says, Keep on Swallowing. You will do just fine. I can't wait until your future posts when we can all laugh about this.
charm

They are Jevity 1.5, I did not pay a single dime. I am going to fight, fight, fight so that I do not have to use them, well at least that is my goal. I am going to the gastro Dr. tomorrow even though his office is closed. He has agreed to see me since I will be going to town anyway. He told me to call as soon as i got finished with the trial of the radiation and he would come right over and look at my PEG and try to get to the bottom of this pain and some explanation as to how to use all this stuff I have just received, above and beyond his job. Greatful I have him and his support.

Wow Angelia, how did you get Jevity for free? I have been trying to stock up on Ensure but that stuff is expensive. Especially if you have to have a six-pack a day. I am having horrible pain with my PEG too and just like you I only received a syringe and nothing else except a hospital note that said "no restrictions". I don't even know how to use the dumb thing.

WOW! Isee that I am not alone with the stupid PEG. My insurance paid for the Jevity. I did not even receive a syrings until two days after and I got the from the nurse who was taking care of me after my port placement. You received more than me. Have you heard anyone mention a dietitian? They are the ones who fill out the paperwork for the forumla.

No, no one has mentioned a dietitian although they probably will since they know I haven't eaten right since my husband died in 1996. That's why they very strongly suggested the PEG right off the bat.

I would get with your RO or MO immediately. Tell them that you are in pain and need to know how to take care of this thing. Call your PCP he/she might be of help. Heck get your dentist involved with it. I tell you my dentist is/was my greatest advocate.

John got his cans of "food" and supplies through Apria Healthcare. They would send a couple of cases of cans at a time along with boxes of tape, syringes, gauze pads etc. Don't be surprised if you get a bill in the mail. I have EXCELLENT health insurance since I work at a hospital. We had no co-pays for surgery, chemo, radiation, CT Scans, PET Scans etc. and we got billed for the PEG food and supplies. I forget what the co-pay was but it cost a few hundred dollars over the course of John's treatment.

Angelia,