So they tell you to be ahead of the disease. To get everything early, to be prepared. In some cases, the suggestion comes too late, because of faster progression than expected. For some, the advice comes too soon and freaks out the patient. I recall a lady at our support group who was told by the facilitator, make sure you order your equipment before you need it." The lady, who had been recently diagnosed, and had walked into the room using only a cane, looked surprised, and asked "what equipment do you mean?". The facilitator answered "motorized wheelchair, bedside commode, Hoyer® lift -- you know.....". Apparently, the newly-diagnosed patient didn't know, and this information came as a shock, for which she probably wasn't ready. And it's so difficult while you're walking, to picture yourself in a wheelchair, and even more difficult to think about a feeding tube while still eating solid food, and swallowing with no problem. And since it's optional, many patients agonize over whether to get a feeding tube at all. Unless you know exactly what a PEG tube looks like, you have scary visions of people flat on their backs with any number of tubes coming out of their bodies.
The truth is that a PEG tube is covered up with clothing and, if you can adjust to large tops, especially those peasant-ish tops which are ample in the front [for women] or nice roomy polo tops [for men or women], nobody will ever know you are wearing one. And -- here is the one that most people are misinformed about -- if you are able to eat by mouth, you don't have to stop when the feeding tube is put in.
So I had my first feeding tube put in September, 2005 because I kept hearing "Get it while your breathing is still okay, because the lower your FVC [forced vital capacity] is, the more risky it is to go under anesthesia. So on the advice of my ALS neurologist and the Speech and Swallowing Pathologist, and the Dietician at the ALS clinic, who determined that I was progressing very quickly, and so I needed to get my feeding tube early to be ahead of a time when I would not be able to swallow at all.
By some miracle, about three years after my diagnosis [early 2007], I reached a sort of plateau [for which I feel very fortunate]. Well, by mid-2009, my four-year-old PEG started to get soft and weak, and leaked a lot. I had it replaced in September of that year. But that replacement was never right. The tube site continued to leak and the stomach acid that came out, burned the skin surrounding the site, and it was a big painful mess.
Then the tube fell out in March of 2010. I went to the local emergency room. The local hospital here isn't my favorite, but it's not terrible. I just didn't have a great time there when I fell and broke my wrist in March, 2004. I stayed overnight at this hospital when I had orthopedic surgery on the broken wrist, and thought the nursing care was -- not very caring. And my trip to the emergency room a week before, when I first shattered the wrist, was nothing short of disastrous.
But the local hospital, which had been absorbed by a large system of hospitals, did a lot in five years to improve its ER, and when I went in March of last year, the waiting time was much shorter and I was in and out within three hours, as opposed to the 6+ hours I was there when I broke my wrist 6 years before. I knew something was very wrong and went to different GI doc than the one who had put in the new tube 6 months before. As it began to get worse with stomach acid really eating away my skin, we decided it had to be done again, but this time in a whole different place.
In September, the tube fell out again. Again, a trip to the local ER, where they replaced it, and every time it was replaced. they insisted on taking an x-ray to see if it was placed well. So, when I was getting dressed three weeks after that [third time in 6 months], I called the new GI doc and we both decided to just let the hole close up since we weren't going to use that hole anymore anyway. Besides, I was not crazy about more radiation on my belly. Stomach cancer I really didn't need, and I was araid any more radiation would give me another dreaded disease.
The first week of December, I went under anesthesia again to have a whole new hole made and a new PEG tube put in. So that's where I am right now, with a new PEG in a new hole, slightly higher and to the left of the old hole. But that five-year-old hole is not closing up as fast as they said it would. So it still leaks out stomach acid, especially when I eat spicy foods -- which I love. And it makes a very socially-unacceptable noise. it sounds like my stomach is laying a big long fart!. Or it sounds as if my stomach is a big balloon that is deflating. It's extremely annoying, and it hurts. Christmas and a blizzard, and now two more snowfalls have gotten in the way of my followup appointment with the GI doc.
Did I get the tube too early? Maybe in retrospect I did. But it's so hard to know. At the time I got the original tube put in, I was progressing quickly and we were afraid my breathing would deteriorate and cause a problem. And the last thing anyone wants to do, is to have surgery on an emergency basis, even a minor procedure like PEG tube placement [a 20-30 minute surgery]. So who's to know? Because we have no way of knowing the progression of the disease, we have no way of knowing how early is too early. But my best advice is still to get it early and don't wait until you end up with aspiration pneumonia, when it becomes a life-saving measure. And if you get it before you need it, you can still eat by mouth and practice putting fluids in the tube, especially if you need to hydrate. Then it won't seem so foreign and scary when you have to use it as your sole method of getting nutrition.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Sunday, January 16, 2011
PEG --Get It Early? and Other Info About the Notorious "Feeding Tube"
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Well, I am sorry to hear that your feeding tube experience has been less than fulfilling, but I thank you for telling your story with it. You are right in telling us, even those of us with MS and not ALS, that we have to plan ahead to deal with things that may or may not happen to us. These progressive diseases are not kind, but brave people like you are, for helping to pave the way for us all.
Hoping things heal well for you, and that the snow clears enough for you to get to your appointments.
Great story thanks for sharing. My dad got his under emergency circumstances when, as you mentioned in your blog, he developed aspiration pneumonia and subsequently was placed on nothing by mouth, per docs orders and a peg was put in that same day. I wish I would have read this earlier. Thank you for this.
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