help pros and cons of the g tube for pbp

[booandi]

hi i am back with another question? i am with a man that is my true love only tonight he made me very mad. he has been eating purieed food and liquids dont even make it down. he is choking even on the food we put threw the kitchen ninja.
so again tonight i brought it up once more about the gtube,. he still wont even entertain the idea . i dont know for sure if its pride or the fear or what,.. i am so scared that he will ,choke or drown . i asked him to tell me why and he says he cant talk , well he cant! but i caN understand him! you see this is the one time he can use being unable to speak as an advantage of sorts. i ask him to at least say he will think about it but he wont even humor me. can somebody please tell me something that will make him think about it more, anything a pros n cons lists ,.... anything he has gone from a size 38 down to a size 32 in 6 months . still no changes that are significat amog his legs and arms, how long before you gguys think before he dies of dehydration or worse? help help help. i am so upset right now and i am sorry for my lack of intellectual corrospondence and for the typos. thank you anyone who will listten

 

[trfogey]

Ms. Andi, If your boyfriend wants to live more than just a handful of months, he'll need that PEG tube. It's not just the choking dangers -- it's the things that go along with the swallowing problems, such as malnutrition, dehydration, and aspiration pneumonia, etc., which will take him from this earth just as effectively and efficiently as PBP/ALS will.

Good luck to all of you.

 

[booandi]

thank you maybe he will listen to your words thank you

 

[tammyg]

Hey Ms. ANdi, You just described my dad. My dad also had Bulbar, he surprised us all when he finally agreed to get his PEG. He was in the hospital overnight thats it. Let him know it's no turning back, if he don't get it soon, they will not do it because if compromised throat mussels,once the mussels get to weak they may not be able to get the breathing tube out, and he will be stuck with it.(other people on the forum did not have to use the breathing tube, I guess different Dr.)They had to do the surgery quick too because of this. The surgery took less then 20 min utes and he was not in mich pain at all. It made life so much easier, he would eat through his PEG and we would go, instead of him sitting there for hours trying to eat. He would still eat his apple sauce and ice cream and use the peg too, but it was in [place for when he couldn't eat at all, not to mention we would just crush his meds, mix with water and put them in the PEG also. Instead of them being stuck in his throat making everything worse. He had so much more energy and i feel the calories slowed down the progression of the disease. I hope this helps you, Good Luck Ms. Andi

 

[jinty]

my husband went from a 44 to 32 in one year he has peg tube and believe me its no problem and he is getting the proper nutrients as well as some proper food sometimes,,,,i do hope you hubby has the tube as its there to help him get the proper stuff he needs to keep him as well as pos good luck janettex

 

[vzandt]

Ms Andi
I dont know anything about the peg tube yet...my husband doesnt walk to well, but we are here and we will listen.

 

[sadiemae]

I recently read on another site of problems developing when you wait to long. Something about the stomach rising too high due to muscle loss in the abdomen and not being able to insert it. F B has a good caregivers page if you are interested in joining, send me a message. There are several folks on there that have dealt with this with there loved ones.

 

[panguinjen]

Miss Andi,

My husband got his g-tube at the end of March. He does not have a PEG because his breathing is compromised and they couldn't go down his throat. Interventional Radiology put a g-tube in his stomach using his Bi-PAP to feed enough anesthesia to take the edge off the pain and a local anesthetic at the site of the tube. He came through with flying colors, no nausea, no throwing up and went home the next day. Does he miss eating, yes! Do he and I miss the choking, aspirating, spitting, excessive drooling, fear of getting food stuck, the hours it took to eat and the very little that went down, NO! His weight is holding steady now, he's lost close to 70 pounds in 6 months. He is on 7 cans of formula a day and it takes about 20-30 minutes to ingest 3 cans of formula (tube is a 12 gauge which is small). We flew to a wedding last weekend, travelled through 3 airports each way; we have two more trips planned, one of which is to Europe, another one driving. We will be gone for most of June. Does this take some planning, yes it does but we're not stopping or staying home....we don't have forever left....

Your post says you're from Madera, where is your doctor?....UCSF did my husband's surgery....PM me for the details if you'd like!

Jen

 

[chrisroski]

I hope that your boyfriend gets the tube. I know how he feels, I to am scared and cannot talk very much, but I finally decided to get it done & am scheduled for June 12th. Do I want it, no. Do I need it yes. I know that no one wants this disease and all that goes with it, and believe me somedays I just do not handle it very well at all & other days not so bad. I think not be able to talk right is the hardest for me. I used to work 8 to 10hrs a say on the phone in C/S, and now I can barely speak to my kids & grandkids. It is very hard and very frustrating. I think the tube will be easier then the not talking. Maybe you can have someone else talk to him about getting the tube. Wsh you well. God bless us all.

 

[booandi]

u can message me at . I have plenty of questions if u can find the time thank you so much.

 

[Judith Ann]

I got my tube Monday...not a bad deal at all! 24 hr stay at the hospital. It is so much easier to not worry about what to eat! I still eat 2 meals a day and tube feed 2 cans of insure 2 times a day. It's so much better to have the meds crushed and put down the tube!

Judy