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nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
Well my appointment for peg tube discussion with the gastroenterologist is next Tuesday. Feel like I am losing a little more of myself every day.
I know that's silly but its what I feel.
Just started using the Trilogy 100 the other night as well as the cough assist.
 
Hugs Neil and Rob,

it is like losing something every day, at least the peg and trilogy are giving you something back in another way as well
 
Xxoo stay strong, try to focus on the gift of another day with people you love
 
I'm going to join your train soon. I'm trying to coordinate the peg with installation of a DPS. Unfortunately the hospital of my clinic, UCSF, does not do DPS so my doctors gave me referrals to a GI and thoracic surgeon connected to the clinic across town. Appears the surgeon requires an eval at the across town clinic and the GI doctor after 5 days hasn't returned my call. The across town clinic is one of those that schedule 3 months out. And I haven't even faced insurance denials yet. It took me over two months to get my bipap due to coding errors, I'm told.
I expect I'm in for a big run around. If it gets too stressful I may just go to my local GI doctor for the JPEG and forget the DPS. I've heard a lot of good reports about the DPS from patients, mainly through the internet but my respiratory therapist doesn't think the system works that well for ALS. Her patients who have gotten the DPS she says don't turn it on often.
Anyway, have you two thought about the DPS? Are you using your local GI guy for the tube or someone your clinic referred you to? I don't think my GI guy has any ALS patients but his wife is a neurologist. That's worth something. Alex
 
I am using a GI guy recommended by my Austin ALS clinic for the PEG. For DPS only a hospital in Houston does it outside of trials. I have been wondering whether it is worth it. I have heard it can add a year to your life, but if that year is spent paralyzed its not worth it.
I wonder how good it is for ALS patients.
If I want it I have to be seen at the Houston ALS clinic also.
 
Keep me posted. If you have any GI issues be sure to discuss the j tube.
 
Supposedly the clinic in tampa uses an interventional radiology approach but since my husband has bulbar, they say he will require 1-2 nights in the hospital depending on breathing complications.
 
Everybody should have a PEG, I love my trilogy and cough assist too but the PEG makes my life easier and I hardly know it's there. I get plenty of fluids without choking and I can still eat when I want, it was a little rocky at first, radoilogist did the surgery while I was awake, my first tube came out but haven't had any trouble since.

Janie
 
PEG tube scheduled for Sept. 8
 
I had this over in the 'feeding tube and pacemaker' string but Janie (thanks!) was the only one to respond.
Hoping that this string has a bit more visibility...

So, I was told last week that I would probably need the PEG w/in 6 months due to my weight loss.

I understand that I will still be able to use the pool at the gym (wear a shirt!), but am wondering how the PEG tubes and exercise in general get along?
 
Greg there is an adult feeding tube group on fb that is really informative.

They put these tubes into very young children who then live pretty normal lives playing sport and swimming etc.

The first 4 -6 weeks will be the key. You need to let that stoma heal really well in one go. If not, you could have continuing problems with it. Follow all instructions on how to clean around the stoma area and how to keep the tube well flushed and they tend to heal quite fast if the doc did a good job putting it in.

In Australia they start with a tube that hangs out permanently and then after 6 weeks change to a button. I think some other places put the button straight in. Once you have a button and a well healed stoma you can do pretty much anything as normal.
 
Hope it goes smoothly Friday! Thinking of you xo
 
I got my peg and DSP at the same almost a year ago. I'm glad I made the decision and have no regret. However I know how you feel it's just one more stupid step in the world of ALS.
 
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