Would you get a feeding tube?

[amandaw120]

Hi Everyone,

My mom has progressed extremely fast (first symptoms started 7 months ago). She is completely immobile, but can still talk and eat. She has a hard time swallowing certain foods, so we avoid those. She has a hard time swallowing some pills so we put them in apple sauce or do liquid forms if available. Her breathing is now down to 23%, they said if she wants a feeding tube she has to do it now and that she will have to have a radiologist do it. With her rapid decline, would you put the feeding tube in? My worry is that with the remaining weeks she has left, she would be in more discomfort. Any thoughts?

I never did any research on the feeding tube, because we weren't there yet and she always was hesitant on it. Now that we got hit with the rapid decline of the breathing, we are pressed for time and need to make the decision ASAP.

Thanks so much!
Amanda

 

[Nikki J]

I am so very sorry. This is a tough question for sure. My sister's respiratory numbers were, I suspect, close to your mom's when she had her tube. ( I do not know exactly because once they dropped below 50 she has refused to tell me)
She also had the radiology procedure,contacted pneumonia and almost died. I know no general anesthesia but guess it was a combo of decreased mobility and maybe the pain from the procedure made her take more shallow breaths. Or maybe she was going to get pneumonia anyway. I don't know but it was a very frightening episode. Took a month to semi recover. But the tube has allowed her to gain weight and not struggle to eat. Can you meet with the radiologist and ask about risks? Or maybe the neuro if asked directly percentage of complications at your mom's respiratory level. I realize this is a very frightening post but I wanted to be honest

 

[patrick123]

It is a tough decision to make to have PEG put in. I had mine put in back in sept. Of 2013 along with a DPS. I also had tough recovery period and was in the hosp. For 5 days. However when a PEG is put on by a radiologist they use a local anesthetic and not a general. I use the PEG for my meds makes it a lot easier and safer. Sometimes this stupid decease progresses so fast it makes your head spin. You are in my thoughts and prayers.

Patrick

 

[Janie H]

I had my PEG in January, it came out in Febuary, radologist did it, once it healed (took about a month) I have had no problems and take half of my vitamins through it, I don't drink a lot because of choking but I still eat, it helps me get water and 9 vitamins that I don't have to worry about swallowing. I was awake through the whole thing, sometimes the pain meds can hurt breathing, I got the same thing from my dr, do it now before it gets worst, Big decision, God Bless

 

[GilWest]

Right there with you. Most people think of feeding tubes as it applies to end stage cancer or dementia patients. Many of these people are not aware that they are hungry or starving. The majority of ALS patients are completely aware of their hunger. My mom did not want one until severe hunger set in.

 

[lgelb]

Amanda,
My husband is in the same FVC range. It does not mean that she is actively dying and unless someone's professional prognosis has specifically been "weeks," I wouldn't make that assumption. In any case, if she is not using BiPAP most of the time, that might make her more comfortable.
As for the tube, case reports suggest no lower limit to her FVC for the procedure, as long as she uses her BiPAP during it and precautions are taken to minimize breathing difficulty/infection (e.g. she should not lie completely flat). I would certainly seek out an interventional radiologist who has done PRGs on frail patients.
Should she have a tube done? Ultimately, I would try to get the best prognostic information available for her to make an informed choice, while being made aware that the best-laid plans/predictions often come to nothing in ALS. She may continue to progress quickly or she may plateau. Her swallowing may go before respiratory insufficiency sets in or it may not. Sometimes just looking at the possible scenarios one by one and adopting the "what is the worst situation that she could be in, in her view, and how can we minimize that probability?" procedure can help.

 

[adozi]

Have one and love it. It allows my caregivers to not spend all their time feeding me and makes pill time much easier and less frightening. I am also immobile and have crappy lung capacity, but I'm relatively happy, and have been that way for at least a year. While everyone progresses differently, and no one can tell you how long she has left, i wouldn't jump to any conclusions. Let her know our thoughts and she may take the decision out of your hands. Best wishes.