When do you know it's the end?

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Corky7

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My dad was diagnosed last week with ALS. He has an aggressive form. Doctors think he only has a few months to live. He has a tracheotomy and feeding tube. The past few days he's been having trouble breathing. He's been getting a lot of phlegm build up. The doctors are having a hard time getting it out. Is this a normal thing that happens when you are on a trache or is this the beginning of the end?
 

KateEmerson

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Hi Corky, my husband started with respiratory failure and was immediately trached and vented, there had been no suspicion of any neurological problem before this although he too had lost a lot of weight. It is not unusual to have trouble with phlegm with neuromuscular respiritory failure as they do not have the muscles to cough up their lung secretions. Are they using a cough assist machine to remove the secretions? This machine will bring up the secretions from the lungs and remove them. Suctioning alone will not get them out of the lungs. Also, he needs to be well hydrated to keep the secretions thin enough for removal.. Kate
 

Corky7

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Thank you for your help. I'm going to find out about the cough assist.
 

KateEmerson

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Hope the doctors can resolve his breathing issues, let us know how it goes. Kate
 

Diane H

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Suctioning through a trach is generally effective because it causes coughing. When the cough is very weak or the cough reflex is gone, a cough assist machine should be better. Hopefully, the doctors have addressed the basics already. More water through the feeding tube, Guaifenesin to loosen secretions, frequent position changes or use of a vest that helps to move the secretions and prevent them from plugging and hardening in the small airways. It is hard to predict the end for an ALS patient. Sometimes it happens quickly without warning. Other times it is a downhill slide that is obvious. And sometimes with treatment, improvement of respiratory status is possible and surprising. Death's door can turn out to be a revolving door, but that is rare and temporary. Comfort measures are at the top of the list at this point.
 

Dave K

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diagnosed last week with ALS.... He has a tracheotomy and feeding tube.
The previous responses are right on: pulmonary secretions are often managed for comfort with proper suctioning, a cough assist machine, medication, and pulsating vest therapy.

However, most people with ALS have established relationships with ALS specialists of various disciplines before they get a tracheotomy. Just one week after a diagnosis, I imagine your family need a crash course on more than just the questions you asked, (which already have been answered appropriately).

If you have not already done so, you should immediately contact your local chapter of the ALS Association and tell them your situation. Hopefully they can help you line up appointments with the ALS-literate doctors and therapists at an ALSA-certified clinic.

Also, if your father has a life expectancy of "a few months," he may be eligible for hospice care, which can be a real blessing if you can find a hospice that has the experience and resources required for an ALS patient with a tracheostomy. Some people may tell you a tracheostomy disqualifies and ALS patient for hospice, which is not accurate. If the trach is required for comfort care (such as managing copious secretions), that is appropriate for a hospice. The hospice should also supply the cough assist, medication, pulsating vest, and everything else required for the patient's comfort, for free. Please see my previous post about the care that a hospice should provide: https://www.alsforums.com/forum/general-discussion-about-als-mnd/37355-myths-about-hospice-care.html.

As for knowing when the end will come, predictions are notoriously speculative. We were once told by two ALS specialists that my wife would be dead in a matter of a few days, but she bounced back smiling and survived another year. In her case, the final ending was preceded by increasing periods of sleepiness, which is a very common scenario, but as Diane said, it can also happen very suddenly, which we have seen happen several times in our local support group. In the meantime, providing comfort is the key, and just being there is a big part of that.
 

biiiii

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Hi, just to give you some hope I also have Als and I have a trache and a feeding tube right now. Please read my whole story here.
<Link deleted. Fund raising not allowed. --mod>
 
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