NothingButLove
Distinguished member
- Joined
- Dec 25, 2016
- Messages
- 106
- Reason
- Lost a loved one
- Diagnosis
- 11/2016
- Country
- US
- State
- CA
- City
- Anaheim
My wife’s doctor doesn’t want to place a PEG tube. Today the doctor told me I might want to get hospice involved. I’m fully wrecked crying my heart out. Here’s how things happened…
My wife started showing symptoms 1/16 and was diagnosed 11/16. She lost both her legs 3/17. Things seemed to slow down but in July, things started to visibly progress. She has lost some function in her right arm and her left arm is twitching. But in general, things appeared normal. She has never complained about her breathing.
Yesterday was our “every four month” visit to the clinic. Apparently, things are not OK. My wife’s FVC is 44% and she lost six pounds. She is 5’ 2” and skinny and has never been over 115 lbs her whole life. She weighed 90 lbs at her last visit to the clinic and weighed in at 84 lbs yesterday. The doctor prescribed a Trilogy, wrote a prescription and left the room without discussing a feeding tube.
As you may know, you see a bunch of people at the clinic. When the speech therapist came in, I said, “I forgot to mention it to the doctor but I want to talk to her about a feeding tube.” She said she would let the doctor know. After we saw everyone we had already been there for 4 hours. I still wanted to talk to the doctor but my wife wanted to leave so we left.
No one ever explained FVC to me and I didn’t understand its importance. When I got home from the clinic, I Google’d it. That’s when I saw that doctors don’t like to place PEGs when FVC is below 50% and there has been weight loss. I immediately wrote the doctor an email had said, “Can my wife still get a PEG with her current weight / FVC?” Here is what she said (paraphrasing):
The doctor is very nice and didn’t explain it so bluntly but that’s the meat and potatoes of what she said. Of course, I had a complete mental meltdown after this conversation with the doctor. So here is what I need to know:
Should I push for a feeding tube? Should I follow what the doctor says? Do I have a choice?
It seems like we’re going from “everything is ok and we’re having fun” to “you’re going to die soon”. From the sound of it, it seems like we’ll be missing the middle part of the ALS journey. I’m super sad and super scared right now. What should I do? (besides calm down)
My wife started showing symptoms 1/16 and was diagnosed 11/16. She lost both her legs 3/17. Things seemed to slow down but in July, things started to visibly progress. She has lost some function in her right arm and her left arm is twitching. But in general, things appeared normal. She has never complained about her breathing.
Yesterday was our “every four month” visit to the clinic. Apparently, things are not OK. My wife’s FVC is 44% and she lost six pounds. She is 5’ 2” and skinny and has never been over 115 lbs her whole life. She weighed 90 lbs at her last visit to the clinic and weighed in at 84 lbs yesterday. The doctor prescribed a Trilogy, wrote a prescription and left the room without discussing a feeding tube.
As you may know, you see a bunch of people at the clinic. When the speech therapist came in, I said, “I forgot to mention it to the doctor but I want to talk to her about a feeding tube.” She said she would let the doctor know. After we saw everyone we had already been there for 4 hours. I still wanted to talk to the doctor but my wife wanted to leave so we left.
No one ever explained FVC to me and I didn’t understand its importance. When I got home from the clinic, I Google’d it. That’s when I saw that doctors don’t like to place PEGs when FVC is below 50% and there has been weight loss. I immediately wrote the doctor an email had said, “Can my wife still get a PEG with her current weight / FVC?” Here is what she said (paraphrasing):
“I think a PEG would do more harm than good at this point. I didn’t want to bring it up during your visit because I could see you were in shock with the news of the progression. I’ve seen hereditary (C9orf72) cases like your wife’s and they can progress very quick. You might consider getting hospice involved.”
The doctor is very nice and didn’t explain it so bluntly but that’s the meat and potatoes of what she said. Of course, I had a complete mental meltdown after this conversation with the doctor. So here is what I need to know:
Should I push for a feeding tube? Should I follow what the doctor says? Do I have a choice?
It seems like we’re going from “everything is ok and we’re having fun” to “you’re going to die soon”. From the sound of it, it seems like we’ll be missing the middle part of the ALS journey. I’m super sad and super scared right now. What should I do? (besides calm down)
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