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Rhonda Kim

Member
Joined
Jul 10, 2008
Messages
19
Reason
CALS
Diagnosis
07/2008
Country
US
State
Ohio
City
Cincinnati
Hi Everyone,
My husband Joe is going to the Dr on tuesday for a consult for a peg. He really needs the peg. When he was first Dx they said he should make up his mind before he reaches 50% on his FVC test. That has a long time come and gone. He said flat out no peg. Now he is having such a hard time eating with out choking and then he can't breath at all. (Joe has the Bulbar Form) It is scaring the Hell out of him. I just can't imagine. I sit with him and wait. There is nothing I can do to help.
Any way, the Nuro Dr called and reasured me not to worry she has seen people much weaker than Joe get a peg. And they wouldn't have to put him on a vent in order to put in the peg. I know She told me and his lung Dr told me it was important to get the peg while his breathing was still at 50% so he wouldn't have a hard time coming off the vent after the surgery. They made it clear that it was a big issue to decide about weather you were going to use a vent or go plative care. Now I don't get it will they use a vent during surgery or not or is it a lets get start and will see kind of thing. I am not looking forward to being put in a situation that it becomes my choice and not Joe's.
Joe wears his Bipap 22 to 23 hours a day. He thinks even if they vent him he will be able to come off of it. I pray he is right. We both know he is close to the end of the road he is on. I guess we just have not been able to decide which fork he will go down when he gets to it.

Thanks for listening. I really just want to know about how they do the surgery.
Rhonda Kim
 
My mother had a peg replaced in April (two months before she died). She never used bipap (refused). She went downhill tremendously the last couple of weeks. During that time, she requested more and more pain medication. When her lungs started filling with fluid, we began giving morphine every hour on the hour. That worked to keep her from struggling at the end. I don't know if they used a ventilator on her during the surgeries but, if they did, then she was ok after she regained conciousness in the recovery room. She lost her voice by Nov 08. She took her last bite of solid food in late October 08. She drank her last drink and smoked her last cigarette in late Nov 08. She lived until June 09. He will most likely do well with the peg.
 
They make a small incision above the navel. They insert a tube into the stomach and inflate a small bulb ballon to hold it in place. Then they put a gauze pad around the incision. You check for drainage on the pad. Most people do not have very much soreness. It is important to keep the area clean and dry. Once it is healed, it is a breeze to feed the ensure, water, and crushed medications to the patient.
 
With how bad his breathing is be prepared to bring him home with a trache and vent. If he is already on a bipap for over 20 hours a day it is doubtful he will not need a vent to get him through the PEG procedure. He may make it but please prepare yourself for the possibility. If he does come home with a vent he will wonder why he did not want one! After using a bipap a vent is like heaven! Good Luck!
 
Thanks Kylisa, So Sorry to hear about your Mom. I lost my Dad 3 years ago of Bone Cancer. I still miss him but I know he is here watching over us and waiting on Joe. He loved him like a son. Thanks for your imput It has helped. I guess I'm scared. My prays are with you. Thanks Rhonda
 
Hi Rhonda Kim, when I had my peg put in there was an anesthesiologist present to look after my breathing. I know that others here have had only a local anesthetic but for me is was a little more involved because I didn't react well to the sedatives the first time they tried and they had to reverse the drugs and try it again for real the next day. I don't use bipap (yet) but I would say that if there is any question about Joe's breathing he should have an anesthesiologist present to make sure he is ok. I think that the way that the peg is put in (in-patient vs out-patient and the level of sedation) is a local decision made by the doctors and hospitals involved so you might want to ask the doctor about how they plan to do it. But however it is done the peg is definitely the way to go, there is no point in struggling to eat and drink when there is a solution. Good luck!
 
Rhonda Kim ... In my PEG surgery, they "entubated" me. Because of my heart disease, the doc wanted total control over my breathing and they had an anestheologist and knocked me out instantly and brought me back instantly when it was done. No twilight sleep stage. I think the surgery itself was about 10 minutes.

In entubation, they put a breathing tube down your throat rather than do anything invasive that requires cutting. The tube is pretty uncomfortable when you're awake, but I was out when they did it and removed it, and had no after effects.

Each procedure is slightly different because each patient has their own health history.

Does Joe have an advance directive about what kind of care he does or does not want? It's a good idea to have that in writing, because making choices for someone you love is very hard. It will take some of the burden off you.

Good luck to you both. The tube will help him as much as it has helped the rest of us, I know.
 
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