Why am I so against a PEG?

[oldgeek]

My health team has all said I need a PEG. My bulbar problems have led to paralyzed diaphragm so I'm trach'd and on a vent almost full time. I've lost a bunch of weight and that has slowed but I am still losing weight and can only manage one meal a day which takes over an hour.

I finally stepped up and met with the GI doc and really liked him. He told me to contact him when ready to schedule so I did - and he's out on leave and so they tossed me to another doctor. She apparently didn't want to do the procedure so she tossed me to another guy who I have never met and who I'm scheduled to have the procedure Thursday. I don't know what the procedure is, they've given me no pre-op instructions (I assume I don't eat the day of the procedure?). According to a web site I found, he's only done about 16% of the number of endoscopies that GI docs with his years of practice have done.

I know I'm a wimp and try to tell myself that I'm imagining problems because I don't want to do it; but all this sounds terrible. Someone tell me I'm OK and should go ahead and let this young doctor "practice" on me.

My pulmonologist told me she could refer me out to a non-teaching hospital; but I dunno if that would be any better.

PS: I would not have done except for all the "PEGs are great and no problems" posted here. So thanks to the team

 

[Doing My Best]

Hi Old Geek, I don't blame you for your hesitation about the surgeon, and especially given the lack of information you've received. I think a PEG is a very good idea and the process shouldn't be too hard, but an experienced practitioner is always worth a lot.

For my PALS the procedure was done in Interventional Radiology, which I think is considered the more up to date method for placing the tube rather than getting it done by a gastroenterologist via endoscopy (in our hospital we were told that would require general anesthesia and an overnight stay, vs. outpatient and light sedation in IR). But I'm not an expert. I would ask for a detailed explanation about the procedure, what alternatives there are and the pros and cons of each, before going ahead.

 

[lgelb]

If you are dealing with a gastro, that means a traditional PEG, which is not as straightforward for someone using a trach and vent. In fact, for any PALS, even if they're not on BiPAP, having tubes placed in radiology is generally preferred. The muscles at the core are weaker, the stomach can be out of place, etc. Interventional radiologists have more experience with these kinds of landmarks and the procedure is easier on your respiratory system because you are not under anesthesia to the same extent.

I would want to see "the whites of their [the proposed gastro] eyes" myself, and also understand why a RIG (tube placed in radiology] is not being proposed, before signing on to any tube placement.

The lack of pre-procedure instructions would not fill me with confidence, either, especially as I would want your own machine to be used. That isn't something you just drag along and hand over to the anesthesiologist. They will want to use their own, which may be fine, but settings/suctioning need to be considered, and without prearrangement, this just all feels sketch.

It's not how many endos they've done, it's how many tubes and in what kinds of patients. You're not exactly a throat cancer patient, let's say. Even OR positioning has serious potential complications for a PALS when you think about strain on joints that can pop out of place and such. We don't know that this person/their team has any experience in this realm.

Is this the same hospital where you got your trach? Is the GI consulting with whoever placed your trach?

I would get some answers. I can't tell you that you're OK because I don't know that to be true, and it doesn't sound like you do, either. All PEGs and RIGs (and all the other tube types) carry a risk. You deserve to know why and how yours will be kept minimal.

Best,
Laurie

 

[Doing My Best]

Laurie, I had forgotten PEG is a specific term not the same as RIG, so when I said I thought PEG was a good idea I really just meant a feeding tube. I'm glad you have the expertise to answer the question so thoroughly.

 

[oldgeek]

Thank you Laurie. You nailed it. When I asked the scheduler about my trach/vent/powerchair - they said they'd figure it all out on Thursday - just as you said. Since I've been passed to three docs, I get the sense that nobody wants the risk. I just sent a message to a new Pulmonologist I was referred to who specializes in ALS and neuro problems to get her thoughts and mentioned the suggestions to do it as a RIG and not a PEG. Thanks again. Very much appreciated.

 

[oldgeek]

Another update. This group is great. The surg Thurs was a day surg, they didn't even know they were putting in a feeding tube so no training scheduled or supplies ordered etc. I called the nurse from the GI doc whom I met and she said that they had messed up, I would be in the hospital for a few days given my vent, trach, cardiac issues, would need home health, etc. None of that was on the plan for Thursday.

I don't think this hospital group has their act together so my ALS pulmonologist is getting me set up instead with a surgeon who specializes in feeding tubes for ALS patients and an RD who also works with ALS patients.

So thank you team for the feedback and thoughts. You helped me avoid a train wreck on Thursday!