Can any gastro Dr. do the PEG- risks?

[barbaraW]

Hi,
Can I get your input and exerience?

I have a local Gastro Dr. set up to do a PEG tube on Monday. I heard today from a different source that with impaired breathing there could be risk of pneumonia. The Gastro Dr. did say he wants to use a different drug because of my breathing but he hasn't done ALS patients.

Is that true? Are there risks because of breathing with getting a PEG? Should I go to the Gastro the ALS center recommends (it is further away) since they have more experience. My fvc was 62% but I can tell it has slipped since that test.

Does anyone have any feedback. Thanks.

Barb

 

[quadbliss]

Hi Barb,

There are special complications associated with implanting a PEG tube in a patient with compromised breathing muscles. If it was me, I would go for the ALS experienced Doctor.

Mike

 

[liz]

Barb -

At the very least, I'd insist that the gastro consult with whoever is treating your ALS or, if you are away from any ALS treatment site, then perhaps he could consult by phone with an MND specialist somewhere in your region about the issues that need to be considered.

Good luck.

Liz

 

[CindyM]

My vote is with Mike and Liz. ALS is so rare that a lot of docs don't get experience and might not be familiar with the issues. Good Luck, Monday is just around the corner! Cindy

 

[barbaraW]

thanks!

Thank you so much for your input!

I set an appt for today for an ALS saavy gastro that my ALS clinic uses.

I will post what I find out.

Barb

 

[FORMYMOTHERRIP]

PEG tube experience

My mother has had a trach and PEG tube for over 11 years. Pnuemonia is mainly a concern for those who are vent dependent. The only real concern about the PEG tube is the balloon tht holds it in your stomach. The PEG will have to be replaced on an ongoing basis as long as you have the PEG tube. This has just been my experience taking care of my mother for the last 12 years.



If you have any other question please let me know.


Thank You

Bill

 

[Al]

Hi Barb. Good idea going with the guy with the experience with ALS.
AL.

 

[Al]

Hi Bill. You are partially right about the pneumonia. Anyone with ALS with compromised breathing or bulbar symptoms is at risk of aspiration pneumonia due to sucking food into the lungs during choking episodes. Also with weakened cough due to poor chest muscles etc. a good cough is not produced which can turn an ordinary cold or infection into pneumonia. Quite a few here this past year reported pneumonia and I think only 1 was vented.
AL.