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Hammerheadzed

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I just wanted to ask any users here how it is to have a tracheostomy.

I have a feeding tube and while it is a massive improvement to choking, it is a big commitment. The tube site needs to be managed and there are going to be complications (Granulation tissue, pain, leakage and infectsions). Food needs to be blended. Diet must be carefully monitored. Putting on weight is hard. Issues such as constipation and diarrhea can be a big problem and so on. So while it has helped and has been worth it, it is a big change from eating and drinking normally. Now I just want to know how it is with a tracheostomy before I consider getting one. The main things that worry me are infections, constipation (since you cannot bear down on food) and management of the site. How mucn more difficult is having a tracheostomy compared to a feeding tube. Because i don't know how much more I can manage.
 

lgelb

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Not sure how constipation relates to a trach, since nutrients would continue to be administered via your feeding tube?

I am sure you will get more P/CALS with trach experience tomorrow, but as I recall you are not on BiPAP yet, so it doesn't seem like this is necessarily a near-term choice. Still, it's a big decision so certainly worth plenty of thought.

The conclusion that a trach is less work for the CALS than a feeding tube is not well supported here. Read posts by Narrowminded and Nuts, for example. The implications are huge, and I think Diane would be the first to acknowledge that.

Best,
Laurie
 

Hammerheadzed

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. The implications are huge, and I think Diane would be the first to acknowledge that.

Best,
Laurie
HI. Thats what I'd like to find out because I might be going on BiPap soon for nights and I was just thinking that I should make some sort of plan going forward. Like where to draw the line. I qutie sure I will not go on a respirator at this point but it depends on how life is at that point and finances as well. I only bring up the stomach tube because it is also a difficult change in lifestyle and if a tracheotomy is much more than I know i cannot do it. It will be too much for me.
 

lgelb

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Well, it sounds like you're going from tube to tube + BiPAP, which will give you more information as to how a lesser degree of respiratory support affects your lifestyle. Keep reading about the everyday implications here, and I think it will be clearer for you, and check out YouTube videos, etc.
 

azgirl

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the feeding tube should be low maintenance. Clean it once daily. Flush with water after feeding. We get food from Medicare and pour it in gravity feed during nap and during nap. Granulation occurs once in awhile but a little cortisone cream clears it up in a day.

using feeding tube requires less effort than eating real food.
I don't have tracheostomy but from what I read it requires MUCH more care
 

Diane H

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Hammerheadzed asked "How mucn more difficult is having a tracheostomy compared to a feeding tube. Because i don't know how much more I can manage. "

If you are talking simply about management of the trach tube and the trach site, it really is no different than a feeding tube, especially if you have a trach without an inner cannula. The trach site itself is not terribly different than the feeding tube site. Both require a soap and water wash and fresh gauze once or twice a day. Infections and granulation at the trach site are possible but no more so than the feeding tube site.

Constipation is handled the same way as before the trach. Plenty of water and a stool softener daily will allow most people to have normal bowel movements without more bearing down than the trach allows.

Feedings actually take longer than suctioning but suctioning is usually more frequent, so that is a toss-up. A trach can plug up so the caregivers need to know how to change it and that is not difficult, especially with a TTS (tight to shaft) trach tube. The issue isn't that a trach takes more time, it is that it is time added on top of the feeding tube time.

Where the huge implications come in is that we are rarely talking about just a trach with ALS. It is a trach and ventilator. As a machine, a ventilator is little trouble. It is reliable, portable on a wheelchair, and needs only battery charging and regular changes of the hose contraption.

The problem is that it is attached to lungs and a body that continue to deteriorate from ALS. A vent can keep you alive for many years while communication is lost, immobility becomes total, a multitude of complications, especially pneumonia, can occur, and the CALS is overwhelmed by care needs, lack of sleep, lack of time for themselves, family needs, home upkeep, financial problems, their own health problems, and on and on.

Anyone opting to go on a full ventilator with a trach when BiPAP becomes insufficient needs to be aware that although it can keep you alive for many years, they will become years you are not likely to want. You need to know that when your quality of life is no longer acceptable to you -- and that can be a matter of only a couple of months if your progression is very rapid -- you can be allowed a peaceful death when the vent is turned off. And you have to be prepared to do that.
 
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Narrowminded

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I noticed you are in Canada. I’m curious if a vent is a choice for you there? I know in some countries, it is not an option. Also, you talk of maintaining these things yourself. I hope you have a caregiver and that caregiver needs to be totally onboard with this decision.

I have a very long thread as a CALS with what it’s like for the caregiver. Not sure you want to read all of that. It is a very larger time commitment and a monetary one as well.

Best to you
 

Hammerheadzed

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Thank you for the very detailed reply. It really helps make things a lot more clear.

I noticed you are in Canada. I’m curious if a vent is a choice for you there? I know in some countries, it is not an option. Also, you talk of maintaining these things yourself. I hope you have a caregiver and that caregiver needs to be totally onboard with this decision.

I have a very long thread as a CALS with what it’s like for the caregiver. Not sure you want to read all of that. It is a very larger time commitment and a monetary one as well.

Best to you
I don't think its covered by the public health system but I can do it privately if need be, I just need to see if its the right choice, but that will also depend on my state at the time. For example, if I am bed bound by that stage I think I will not be going that route.

Regarding a caregiver, right now I take care of myself except food preparation, but I have bulbar onset so I am mobile and can do a lot of things myself and want to stay as independent as I can for as long as I can. But I'm not unrealistic because as soon as it became too hard to manage my nutrition I reached out for some help.
 

affected

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If you have a vent hooked up to the trach you will need someone with you 24/7 as this is your only way of breathing.

Sorry you have to make these choices at all.
 

notBrad

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I was on a mask +bipap 24/7 prior to getting my trache and I wish I had gotten my trache long before I did. Shaving and dental hygiene are a breeze now versus having to take breathing breaks. If my nose gets stopped up - no problem! I can't smell like normal since I can't breathe in through my nose, so farts don't bother me!
 

Inventor

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Over here getting a trache meant moving from wife and a caretaker to a 24/7 nursing team, all covered by the public healthcare. Since it is financially not an issue, life is good in spite of complete paralysis. Trache maintenance takes less than five min every other day. We do no suctioning from the trache: just cough assist every hour or so. Quality of life is excellent.
 
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