Peg tube would you do again

[caldona]

My fvc is 27 my doctor from St. Louis has never ask or suggested a feeding tube. I did get choked about a week ago it was bad for awhile but my husband move me and it came up before the emergency vehicle got here they checked my lungs and they were clear. I don't get choked very often. So what do you think

 

[Ms. Pie]

I just had my first swallow test today and it showed a little trouble that a second swallow cleared. When the time comes I'll get a peg.

 

[caldona]

They have never given me a swallow test

 

[Ms. Pie]

I asked for it from my speach therapist and Primary Care Physician and they were happy to set it up. Sometimes you have to be a bit agressive for treatment.

 

[Felica]

I got my peg while I could still eat. At the time I was having trouble swallowing liquids and could not get my meds down I had gotten severly dehydrated At first I just used the tube for water and meds. I could still eat regular food ..as per your question. I would do again in a heart beat. It is my only source of nutrition now and to keep weight up.

 

[caldona]

Another lady here, the doctor her that she should get one asap while her body was in good condition but her oxygen levels are in the 90s. She was diagnosed12-06

 

[Ms. Pie]

My breathing is still ok. My PCP will help me when the time comes.

 

[BeckyW]

I got a peg while my breathing was good but had trouble swallowing liquids and meds. No regrets. I can eat what I want and not worry about calories. Next week I am getting it changed to a button. I won't miss the long tube.

 

[lovedbygoldens]

My mother had her PEG tube placed when her FVC was 64. Her care team (ALS Clinic at KU Med) insisted it was safer to have the procedure done while her FVC was above 50 even if she could steel eat and drink by mouth. We are very glad she had it done and I think based on our convo's she would recomend it. She is now up to 4-5 cans per day and has been able to maintain her weight. The goal now is to increase how much she can tolerate and maybe see the scales creep up even more. She still eats a little a couple times a day by mouth (mainly I think to appease her husband) and drinks coffee, water and juice through a straw orally.

My thoughts, if you are going to get it, don't wait. The procedure was very easy with an overnight stay in the hospital for observation and had very minimal discomfort for the couple days following. Good luck!

 

[VoiceforLinda]

I would speak to your doctor and request the feeding tube. I wouldn't delay if your FVC is dropping. You can still eat but at least it will be there if you need it. I have no regrets.
Linda

 

[HelenL]

I plan on getting it as soon as I start having problems eating... luckily that's not an issue with me yet. If you wait too long, you may not be strong enough to get it if you do decide to get it.

 

[kiwisally]

This has me concerned too, big time as most people (those with a PEG, or caregiver of those with a PEG, doctors other than gastroenterologist) seem to universally say do it "early". I still eat with slight modification to foods but have most trouble with liquid at this time and find it hard but not impossible to stay hydrated. Was referred to gastro for PEG by respiratory clinic (lung function still normal) simply because I "choke occasionally". Gastro had a very different perspective on the PEG than any others I have talked with so far and that in and of itself gives me pause for concern. Basically he said if I wasn't aspirating foods, had a good cough, could stay hydrated and had lung function above 70%ish, then he would not recommend a PEG due to what he views as a 5% chance of death related to PEG surgery alone, in addition, if I intended to continue to eat after PEG then again he would not recommend it until I was ready to give up on food. His perspective was why take a 5% risk. He also discussed doing the procedure without general just a local to improve my odds. I realize this is more specific than "would you do it again". Does anyone have any helpful feedback on any of this? Thanks.

 

[Okie2]

I had my peg put in when my fvc was around 55%. It was explained to me to do it early because one thing that might happen is as the diaphragm gets weaker it may let the stomach get pushed behind the rib cage and the peg could not be placed properly. Also the breathing might be a problem during surgery. I can still eat and drink just fine but my breathing is getting worse. I would certainly do it again just for peace of mind. As many have said do it early.

 

[rachelg]

My husband was advised to get a PEG after a few nasty choking episodes and when his swallowing became even the slightest bit tricky. We are constantly told that good nutrition, hydration and not losing weight is essential to good health when living with MND especially when bulbar onset. My husband had his PEG done the month following diagnosis.

 

[patricia1]

How do you do a peg with a local .I always thought it was under a general and that is is why they worry about your breathing .
Thats doable if done under a local .