Feeding Tube? Does It Impact Any Aspects of Your Life?

I was diagnosed with Myasthenia Gravis (MG) in 2012, after almost a year of having swallowing problems and speech issues and having multiple medical tests to determine what caused them. I went over ten years of maintaining my MG with Mestinon. Then in 2023 my MG symptoms started getting worse and the swallowing and speech problems started lasting longer. The swallowing was more difficult with pills and capsules. My Neurologist upped my dosage but the Mestinon was not as effective as it had been. Then in October 2024 I broke my neck requiring major neck surgery with the addition of two surgical rods to hold the fractured C-5 Vertebrae in place. Thank God I recovered from this injury with no paralysis or other major complications other than some nerve numbness (very minimal) in my hands and forearms and some slight restricted movement of left shoulder. After arrival to the ICU prior to the neck surgery I was needed some medication which I was unable to swallow and there was no IV version of the specific medication available. And, the nose tube was absolutely not working. After a battery of swallowing tests and X-Rays it was decided that a PEG-Tube be placed in my stomach.
May I say, that was a life changing and life saving decision. Finally, I was able to receive, not only my proper medications on schedule, but I was also able to receive the proper nutrition through the Feeding Tube Formula.
I have remained on the Feeding Tube since October 2024. I have had two replacement tubes put in as well (replacement is every 6 months), which is really a simple procedure despite it requiring to be done in a surgical theatre outpatient facility.
Now to answer your initial question, after my lengthy history of my condition, the Feeding Tube has greatly improved the quality of life and has, for me at least, almost no negative effects. I can eat some very soft small pieces of food, very carefully chewed and slowly swallowed. I do have some choking issues I always need to be aware about. Drinks like coffee, teas and other beverages are usually okay but I limit the creams, milks and other things which may induce phlegm. Soups with little mushy food items are usually okay as well.
I will say this. I manage my feeding and medication times around if we are going out to dinner or other activities so that I won’t have to pull out my tube in public. But I have at times, gone into a restroom bringing my meds, formula or container of water and the feeding tube syringe to quickly take care of my needs. I find that good preparation is key to success.
That’s my answer. My feeding tube is a very positive part of my MG life plan.