Timing of feeding tube?

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Tomswife

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Hi. My husband Tom. Received his official diagnosis on August 16, 2022. Bulbar onset ALS. He is 69. When we had our first meeting with the team at Nypresby they pushed for feeding tube insert asap. (Lots of pushing) The reasoning was - do it now while you are still healthy and can tolerate the procedure.
Tom can drink liquids with ThickIt but he does cough. He does not want the tube at this point. I did encourage him to follow the Dr. advice and I explained the process based on documents we were given. Did anyone wait to have this done?
Thoughts?
 

Nikki J

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My sister waited. Too long. she was very thin by the time she agreed. she was scheduled 2 months after that because it was over the holidays. Then she had to reschedule because she had a cold. A month later dangerously emaciated with poor breathing she had the tube ( rig procedure). Almost died. Refeeding was a nightmare. She pulled through. Another PALS I knew then similar story did die. He couldn’t tolerate refeeding. Both were about 2 decades younger than Tom. You can eat with a tube if you can otherwise do so safely. Coughing with thickened liquids sounds like he may not be doing so but if he is safe the tube doesn’t have to be used. It can also be used for meds supplemental fluids and food if he is not able to take in enough due to illness or fatigue

it is also a gift to you. Watching your loved one choke and struggle is traumatic. My sister delayed. My mother refused. I have PTSD from this. I have sworn the very first time I am recommended I will say schedule it
 

lisa g

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If your husband isn't experiencing any respiratory issues now would be the perfect time for a feeding tube. He wouldn't have to use it if he's still able to eat safely. I was coughing while eating and while I wasn't aware of it I aspirated into my lungs and ended up with a nasty lung infection. I then made the choice and went ahead with the tube placement and have not regretted that decision. Better safe now than sorry later.
 

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My husband was bulbar onset.
If Tom needs thickening agents now, get the feeding tube.
Dehydration becomes so common and an issue when drinking fluids is so hard, and the PALS naturally starts avoiding drinking so often because of the swallowing.
You can immediately begin hydrating Tom well and let him enjoy drinking by mouth, with thickeners the fluids he likes most which he can sip and enjoy.

The reasoning of also having the procedure while in as good condition as possible really can't be overstated either.
 

Tammyrogerson

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I am one of the stubborn ones. I just went to dr and my breathing has went from 70% to 58% and they suggested the feeding tube again and I am scheduled to get the feeding tube on Wednesday. I have some issues with breathing and tomorrow they are coming out to set me up on the breathing ventilator and a coughing machine and a suction machine. I have been having problems of coughing when I eat and drink. I cannot tolerate the thick it. I am scared at getting the feeding tube but I know that it is best.
 

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Tammy, try to look at it as you taking control and saying 'take that ALS!'
If you let the ALS take a lot of your ability away and then finally 'give in' to these supportive strategies, you just won't get as much help from them.
I'm so glad you are going for the feeding tube - get really hydrated and get the nutrition you need going, and enjoy eating by mouth the safest things you totally enjoy the most.
 

vltsra

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From a CALS perspective, the feeding tube was a blessing. We used it for meds that he had difficulty swallowing at first. At the end he was using it exclusively. We didn't have to worry about aspiration. And he always enjoyed having his stout beer thru the feeding tube on the weekends.
 

lisa g

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Tammy take it from one who has a feeding tube. There's no reason to be scared. Yes, you'll have some discomfort for a day or two afterwards but, then you'll see how stress-free mealtime becomes and how easy it will be to maintain your weight. Good Luck.
 

blakej

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Aif is FVC is still over 50 he can have the procedure. I have bulbar onset ALS too since September of 2021. I've been told as long as my FVC is over 50 the procedure can be done. Encourage him to work on breathing techniques every day.
 

Nikki J

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50% in breathing is often the point where they want to do a feeding tube even if swallow is still fine. It sounds like op’s husband is having swallow issues so that is why they are recommending it no matter what his respiratory status
 

Tomswife

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Thank you all, and Tammy and responses. Tom and I talked and he agreed we can schedule the procedure. I let him know some of the advice here and it was helpful to him. We asked for the procedure after mid November.
 

Nikki J

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I am glad he agreed. It will be a relief to both of you once it is done. Good luck and keep us posted
 

Bestfriends14

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My husband waited too long, so he can no longer get a tube. Unfortunately, this will mean he'll either choke or starve to death, or have to get MAID so he doesn't suffer. I'm glad your hubby's going to do the procedure
 

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Just to clarify, studies of PALS using BiPAP during the radiology procedure have shown success even with FVC as low as 17%. But as the disease progresses, anatomy can change and make the placement more difficult, so that is one reason that clinics start recommending the tube at 50% or whenever maintaining nutritional needs safely is a question mark.

50% is an older number from when tubes were more often placed by gastroenterologists in a surgical suite, where the level of sedation, procedure time, time in a supine position are all greater and therefore so is the risk to impaired breathing.
 

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Laurie raised an excellent point here as this is exactly the case for an Ozzie PALS I know right now. They can't have a PEG because of their breathing limitations, and because of anatomical issues they can't have the tube placed radiologically. Horrible to have to give this news to someone, so too early isn't really a thing.
 
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