Hi Rhonda -
My PALS, Pat, had her tube put in at 47% Forced Vital Capacity. There is a medical standard now that says a PEG should be inserted around the 50% mark. The reason is that when breathing is worse than that the procedure can be dangerous because of the sedation (not the same as anesthesia).
Pat used the tube occasionally for about a month, now has not used it in 12 months. The assumption is that you will need it and it is better to place it under non-emergency conditions. Pat is glad she did it early.
MANY people in our clinic have resisted this medical advice out of fear. I saw two people die with FVC in the 20's the same week they placed the tube, I also saw one do really great at that level.
One more thing - some research just came out that says bolus feeding greatly stresses breathing. That is a way of using the tube where you use a syringe to quickly put in the feeding. There are other ways to feed that are easier on the patient, but even at our ALS clinic they taught us bolus feeding, and that is what we demonstrated back at the time of tube placement.
Bottom line - the PEG is as much about breathing as it is about feeding. I urge you to go ahead and do it while you are healthy enough. Plenty of research shows it prolongs life by providing adequate hydration, as well as good nutrition. Very few things have been shown to affect the life span of PALS, but the PEG and bipap are both known to extend life.
My vote - it is not a bad procedure - trust your clinic if it has ALS experience - get the tube.
Like the others say - I understand the fear. But please talk to some PALS who have had it - it is worth it.
Good luck! Beth