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sunkist

New member
Joined
Sep 28, 2014
Messages
3
Reason
CALS
Diagnosis
01/2014
Country
US
State
Pennsylvania
City
Easton
hi, I'm new to this forum. My husband has familial als in the bulbar region. His ALS clinic wants him to get the peg tube, but I'm trepidatious about it. He also has FTD frontal temporal dementia and I'm not sure he actually understands the impact so I'm left with the decision.
Any advise would be helpful. Thanks
 
Welcome sunkist, but I'm so sorry you have joined us.

My husband had bulbar onset ALS and FTD.

Can you tell me what your trepidations are, and I will try to help you with information.

I will say that at least I could get medications into him, and he didn't have to spend hours eating and choking ...
 
Its really a pretty personal decision. The peg tube allows a pals to receive nutrition, fluids, and medications. At any time they can decide to receive any or none of them. If you are not in need of the tube for regular feeding/medication right now but need to make a decision because of breathing issues, you should know that daily care is minimal. Initially you change a dressing and run a syringe of water thru some tubing that you hook up to the peg. After the healing has occurred, you do daily flushes with water. We have had no problems with the maintenance. I like my pals having it because he was losing weight. If he is too tired to eat or just having a tough day I could supplement with the liquid nutrition. My pals breathing became compromised early and continues to decline so he had to decide very early on about a peg. We feel it was the right decision. The procedure here is done with a one night hospital stay if your breathing is compromised. The procedure takes about and hour then the pals goes to recovery. You can see them and follow them to their room. Our hospital offered a reclining chair for the overnight. In hospital, a feeding company nurse came and showed us how to use the peg, the discharge nurse also showed us how to use it, then a home health nurse reviewed everything with us. We were left with materials and a phone number if we had any additional questions or problems
 
Welcome. I am very sorry you have to be here. If he can no longer fully consent did he express any wish in the past?
If he did not then you of course must decide guided by what you do know.
I am a strong proponent of feeding tubes. It will spare you and him episodes of choking and long drawn out efforts to get even a small amount of food in.
My mom had FTD/ALS but had previously expressed a wish against a feeding tube. It was truly horrible. I will never forget the struggle to feed her...
What are your concerns about the tube? Perhaps we can help answer questions?
By the way my family is c9orf72. Do you know your gene defect?
 
Agree with gooseberry about the peg
 
I had more difficulty than most getting my tube installed but highly recommend it. You do not want to experience the choking when he can no longer swallow safely. Not only is this horribly uncomfortable and scary (I know I went through it and was on a thick liquid diet for a month), but will sooner or later lead to aspiration pneumonia, which is often fatal.
You might also want to try Nuedexta, which is approved for FTD but also has a side benefit of helping many patients with swallowing.
 
My PALS choked on his lunch, then got the PEG. We found it to be easy. Far better than being hungry and scared to eat. I say do the tube.
 
Do it.

It's not that big a deal to insert if you have ins. Removal is even easier.

I am bulbar also. I lost 66 pounds before going on the peg. I have gained 9 of those back in 4 months. I would have starved to death without it.

GB
 
Thanks everyone for your input. My hb is still very much aware of day to day things, he forgets a lot but I think his quality of life is still good. He's no where near end of life. I guess I'm concerned about him pulling it out while I'm at work. I am a teacher and hopefully this will be my last year. I would need to get nursing help in to feed him breakfast and lunch. Also on my plate right now is our daughter is getting married in 3 weeks and I am having rotator cuff surgery the next week. I'm concerned about how I will care for him when I' be unable to care for myself. We that's it n nutshell.
 
If he tried to pull it out without first deflating the balloon, it would be very painful, I bet. I don't see him doing that. Once it's been in four weeks, the tract is intact for several hours after tube removal, and easy to re-insert by a trained nurse. After that, the tunnel grows shut.

GB
 
Sun kist, I use a binder around my stomach so I don't accidentally snag it and pull it out. It's not tight so it doesn't interfere with breathing but gives me security from accidents.
As for the feeding. If daytime feeding is a problem, you can get a pole system and bag and use at night while everyone is sleeping. Drip rate can be set slow enough to last several hours and then flushed the next morning. A pump system is also available that does the same thing. All the daily feeding goes in the bag at one time I think
 
Sunkist I would suggest that if his FTD is sever enough that he could pull out a peg tube whilst you are at work, then you are simply not going to be able to leave him alone while you work at all, so getting a peg is not really the issue.

You have a lot to plan for and try to keep floating at once. I hope you will have some help after your surgery, your kids will come or something?
 
Thanks all - especially affected for your good wishes on my upcoming surgery. I will have to hire someone to help as my daughter will be on her honeymoon and my son lives across the country.:cry:
 
Hi. If he had a "MicKey" button peg he would not be able to pull on the tube as there is no tube permanently attached. You have to attach a tube to the "button" when you do feedings, water, meds, etc. and then when finished you unattach it. One of the reasons this type is commonly used with pediatric patients is so they can't pull out any tube. Good luck and hope this info is helpful. Should also mention that is a person has this type of peg they won't be able to access it themselves due to the design.
 
Actually there is a right angle tube that would allow for access by the person but you need good manual dexterity to use it. I know my husband no longer has it. I personally dont like that attachment and prefer the more vertical hookup you spoke of vw-fl.
 
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