Has anyone decided to not have a peg?

[twitchykitty]

Very recently My lung function Dropped from 75 to 45 over three months , I had Another test 4 weeks later and is still around 45. So the doctors asked me whether I want a peg or niv. To be honest I really do not want a peg. My reasons are I suffer from anxiety and got panicked having a alarm On my wrist and not being able to get it off , imagine a peg. I think it will depress me I ve seen them go wrong as I was a nurse and can cause those people problems for a while after insertion and I'm not sure I want to go through that or risk it and lastly, my swallow is okay I am on thin fluids with chin tuck or I can choke and eat mostly why I want and this hasn't changed for a year, I am roughly 2 yrs 10 months in. And I feel that my lung function will go b4 swallowing will as this did happen to someone that was very similar to me. I'd love to hear from both sides for opinions


And off topic for one other thing. Does anyone ever feel like they think the doctors think they exaggerate their symptoms? Eg, 9 months ago I told the dr I could feel it in my speech it was slower and I felt like I was straining and he says "sounds fine to me" like a dismissal . It just annoys me and makes me feel embarrassed thinking they think that about me.

Thanks in advance

 

[Janie H]

I got a PEG almost a year ago and I'm really glad I did. I have breathing issues and they wanted to get it done before my breathing got worse. Really not as big a deal as might think. I can only drink what I want, I still eat soft foods. most of vitamins can be put in the tube or I would be taking pills all day. Give it some thought.
As far as speach, they would tell me the same thing, I no longer can speak

Janie

 

[nebrhahe53]

If I had it to do over again I probably wouldnt do the peg. Ive had nothing but trouble since September when I had it in. First pain, then botched mickey button, then infections. Ive really had about enough.

 

[Graybeard]

I would have starved to death before now without the peg. Eating and drinking are highly overrated.

 

[Atsugi]

My wife refused all tubes including the PEG. (During her last week she accepted a catheter only.) That was a very good decision on her part. During the week that she died, she became locked in, unable to communicate except for blinking. On her last day, even her eyes didn't work. Had she lived any longer, she would have lived totally locked in and unable to express even 'yes' or 'no' answers. The disease has its own schedule, and doesn't stop just because you're being fed.

In her last days, lying sitting up in the hospital bed in our house, she was calm and smiled often. I dressed her to receive visitors by cutting out the backs of her dresses and putting them on her so she was "fully dressed" sitting there. No one could tell she hadn't dressed herself normally.

As it was, without tubes, she died "on schedule," so to speak, dressed nicely and dignified in her home surrounded by loved ones.

 

[patrick123]

Steve Gleason once said. until there is a cure for ALS technology is my cure. I try to stay one step ahead of this decease. I wish I didn't need all this junk but I have no regrets. Everyone must make their own choices.

Patrick

 

[Nikki J]

A PEG is a personal choice for sure. My mom did not want one and we honored her wish. But it was so terribly terribly hard to watch her trying to swallow and choking and worrying about aspiration. My sister has a PEG but waited until the very last moment and again watching her struggle to swallow was a nightmare. I am haunted by this- PTSD really. If you have loved ones who will be by your side at least consider this when making your choice.
I will schedule a PEG the first time the neuro says it is time

 

[cheerleader]

My husband was adamantly opposed to having a peg tube- waited 2 years until he aspirated and was hospitalized. They gave him the choice of peg tube or continuing to aspirate. He let them put it in- and died in his sleep that night. I will always wonder if it was because he waited so long and was so emaciated when it was put in, or if the surgery did it or if he simply had reached the end of where he wanted to go with this disease. The point I'm making is, don't wait too long to make the decision.

 

[Graybeard]

I had the peg four months before I used it. I finally got to a VA nutritionist who showed me how to use it with a kangaroo bag. That followed closely after a kidney stone from dehydration. Home health care nurses didn't know the first thing about it.

Mine is a tube that protrudes about 8 inches from my upper belly, and has not been a problem. I don't spill a drop during feedings. I was told the mic button was for after the initial hole was fully cured - not for a first time. I can't imagine it being any advantage over what I have. I just fold the tube over to shut off flow when connecting the bag's tube.

 

[andycap]

My husband refused the PEG because he said he could still eat, swallowing liquids is bad we just had his
lungs tested again at Johns Hopkins and they said he is at 97%.His lungs test in September was 68%
has anyone else's lung test gone up instead of down? I was shocked because he dose have such a hard
catching his breath.He said if he agreed to the PEG it would be because he is constantly biting his
tongue and cheek .So sad I can't understand him most of the time when he is trying to talk. Andrea

 

[skipper66]

Andycap: I don't know what my dad's actual numbers read. But, I find it very strange that during his first year into it he used a bi-pap at night. But, now he doesn't need one. His voice seemed worse then too. Doesn't seem to make sense. But, dad has limb onset so maybe that is why. He is getting weaker in arms and legs.

 

[Barbie]

My husband has refused a peg. he eats everything pureed and chokes and coughs a lot. eating is a chore and he has lost a lot of weight. he only weighs 118 lbs. but he doesn't think he needs it...I support him with what ever choice he makes.

one reason that breathing scores go up and down is that they are not perfect--depending on the seal they get or how tired the pals is can both affect the score. I don't put a lot of stock in it. my pals has been all over the board with his and I just base it on how he feels.

 

[gooseberry]

My husband initially didnt want a peg. When his anxiety spiked he wanted to be sure he could get meds so he had it done. He said he would never use it for calories. Today he said he needs to start using it for nutrition because eating makes him so tired. Opinions and circumstances change over time. Its important to consider all the perspectives because they only place them when the breathing numbers are at a certain level.

 

[hn7609]

I decided that I would not have a peg and for that matter any of type of breathing assistance either............But then I really began to have lots of trouble chewing and swallowing food. I was working hard for 45 minutes just to eat a bowl of soup. A couple of choking incidents convinced me to go ahead and get the peg. I did it about 3 months ago and it is working well for me. About half of my nutrition comes thru the peg and I still get to eat some of my favorite foods, Trouble breathing and a shortness of breath in bed convinced me to get the bipap and it also is working well for me. You may be against it now but keep an open mind.....things are guaranteed to change

 

[pearshoot]

don't rush into making these kinds of decisions.........its all a matter of how you feel...