Tracheotomy and Ventilation |
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Deciding whether to get trached and vented is perhaps the most consequential decision you will make. This procedure will likely prolong your life, but it can come at a great expense to you and your family. It does not slow down or reverse ALS.
A tracheotomy is a surgical opening in your neck through which a breathing tube is inserted directly into your windpipe. A ventilator, or breathing machine, is then attached to help you breathe. Once you are “trached and vented,” the ventilator will breathe for you when your respiratory muscles are no longer strong enough to breathe on their own. |
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It is best to make this decision well ahead of time—when you can still fully express yourself, ask questions, discuss, and explain your decision. Once you decide, be sure to update your advance directives so that your wishes are crystal clear to loved ones and medical professionals.
Should I get a tracheotomy?
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This is a very personal decision. Only you and your family will know what is best. Unlike a feeding tube, this is a decision that cannot be reversed.
In the United States, fewer than 10% of ALS patients get trached and vented. If you are considering getting a tracheotomy, discuss the pros and cons with your neurologist, ALS clinic team, and local ALS organization. It is also important to talk with your loved ones, because once you are trached and vented, you will need 24/7 assistance. Most families cannot afford full-time professional care, which means that the family becomes full-time caregivers. |
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“I thought of our youngest son, and that I owed it to him to be around, if I could, for his high school graduation, or college graduation, and for our youngest daughter, to maybe see her get married. Suddenly it wasn't about me, it was about them.
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"[Ventilation] is really not that bad! It takes some getting used to, no doubt, but if you take it a day at a time, or a minute at a time, you get through it, you adapt. One plus is that you can finally breathe. My family and friends say that I look 100% better than I did, and I have five times the energy.”
- Tim Green, Former NFL player living with ALS
- Tim Green, Former NFL player living with ALS
What are the pros and cons to this procedure?
Some people choose to extend their lives for reasons like spending more time with loved ones or fulfilling a greater purpose, despite the limitations that come with 24/7 ventilation.
The main disadvantages to getting a tracheotomy are:
The main disadvantages to getting a tracheotomy are:
- You will probably need to be attached to the ventilator 24/7.
- You will need 24/7 assistance. Professional skilled home care is very expensive and not covered by Medicare, which means that family, friends, and trained caregivers usually provide most or all of the care.
- The vast majority of trached ALS patients are unable to speak.
- By prolonging your life, you may end up unable to communicate in any way, which is referred to as a “locked-in state.”
When should I get a tracheotomy?
When noninvasive breathing support from a bilevel machine is not sufficient, the invasive breathing support from a tracheotomy and ventilator will breathe for you and help you stay alive.
If you decide to get trached and vented, you will want to make the decision well ahead of time—before you are really struggling to breathe with a BiPAP. Again, be sure to discuss this decision with your family, including the cost and care that it would entail.
If you decide to get trached and vented, you will want to make the decision well ahead of time—before you are really struggling to breathe with a BiPAP. Again, be sure to discuss this decision with your family, including the cost and care that it would entail.
What is the surgical procedure like?
If you are considering a tracheotomy, your neurologist will refer you to a pulmonologist for consultation. The pulmonologist can answer all of your questions regarding the procedure and rehabilitation.
Getting a tracheotomy is much more involved than getting a feeding tube. ALS patients often remain in the hospital for two to four weeks after a tracheotomy.
You will need to go to a rehab facility to learn how the ventilator works, and your personal caregivers will need to be trained before you go home.
Getting a tracheotomy is much more involved than getting a feeding tube. ALS patients often remain in the hospital for two to four weeks after a tracheotomy.
You will need to go to a rehab facility to learn how the ventilator works, and your personal caregivers will need to be trained before you go home.
Once I have a tracheotomy, how does it work?
At home, you will be attached to a portable ventilator, which will breathe for you. Your caregivers will know how the machine works and will need to make sure that it is working properly. Most ALS patients will be on the ventilator 24/7, though some patients can disconnect for short periods of time during the day.
In most cases, once you are on a ventilator, you will need to get your nutrition, liquids, and medication through a feeding tube. If you do not already have a feeding tube, you will receive one when you are under anesthesia for the tracheotomy procedure.
In most cases, once you are on a ventilator, you will need to get your nutrition, liquids, and medication through a feeding tube. If you do not already have a feeding tube, you will receive one when you are under anesthesia for the tracheotomy procedure.
What if I decide to stop using the ventilator?
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If you decide to disconnect the ventilator, your breathing will take its natural course. If your respiratory muscles are greatly weakened, then your breathing will likely slow before stopping altogether.
Patients who decide to go this route often bring hospice care into the home and receive sedation before removing the ventilator, which can help minimize breathing distress and provide a more comfortable end-of-life experience. |
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Is it expensive to get trached and vented?
Ask your medical providers to give you an estimate ahead of time for what you will need to pay out of pocket. An expensive part of being trached and vented is usually the 24/7 assistance you will need once you are home. Medicare will not cover long-term home care if you are on a ventilator, and most insurance policies won’t either. If family and friends cannot provide full 24/7 coverage, paying for a trained caregiver or skilled nursing care can be very expensive.
What if I decide to not get a tracheotomy?
Most ALS patients in the U.S. decide against tracheotomies because they either don’t believe their prolonged quality of life will be worth the cost and limitations or they do not want to burden their family members.
If you decide against the procedure, you can still use a BiPAP machine for breathing support. However, if your respiratory muscles weaken enough, you will struggle to breathe and to get sufficient oxygen. At this point, many ALS patients begin receiving hospice care, which can administer drugs to provide a more comfortable end-of-life experience.
If you decide against the procedure, you can still use a BiPAP machine for breathing support. However, if your respiratory muscles weaken enough, you will struggle to breathe and to get sufficient oxygen. At this point, many ALS patients begin receiving hospice care, which can administer drugs to provide a more comfortable end-of-life experience.
