Tracheotomy and Vent

[Chumpy]

My PAL has bulbar onset ALS. He is facing deciding on trach. He has been on NIV for about 8 months and his diaphragm has become weaker, pulmonary Doctor has recommended trach.
My PAL wants to make an informed decision. Yes a lot of information on web, but he wants current, straight from other PAL information. What to expect, good, bad, and the ugly...
Thank you in advance! Praying for a cure!

 

[lgelb]

Chumpy,

My primary comment at this point is that most often 8 mo of NIV even in bulbar onset is early to consider a trach, and some docs recommend that step sooner than needed. So that would be my first hypothesis to test. Is he uncomfortable, experiencing air hunger, low O2 sats....? Is someone monitoring his data/symptoms and adjusting his NIV accordingly or was this "set and forget?" When were his settings last adjusted? You can post/PM his settings/any symptoms if you want a more informed response.

Best,
Laurie

 

[Diane H]

Would info from someone who has ALS and has had a trach and vent for 12 years be of help? Maybe you have been to my website, but if you haven't, there is the medical information and the nitty gritty of daily life.ALS From Both Sides

 

[Chumpy]

Laurie,
I think it's kind of both. He did just have his setting changed a couple of weeks ago to allow a higher volume. That's what the respiratory therapist said, he was hitting a ceiling and needed more volume. I'm still learning about the trilogy.... His says haven't been too bad, but he's also not staying on the trilogy as often as suggested by the Doctor. He doesn't care for the nose pillows and says daytime setting is to fast. But he uses it 10-12 hours a day. His FVC is at 40% last month. His overall health is crappy, weight loss, depression... Overall weak and tired. Doctor thinks the trach would give him better overall well being by breathing better. I'm not 100% sure myself, he's not a great patient. He has a tendency to do what he wants and not the suggested things by doctors. His way of being in control I guess. But back to the matter at hand, the Doctor made this recommendation back in December, the way he has been feeling lately has him considering it. That's why we are reaching out for more information. There is so much "text book" information available online. We want to learn real life issues to be better prepared. We get everyone is different, but to be prepared in this serious of a decision is best. As always ALS SUCKS, but together we can make a difference! So thank you for all your help!
Robyn & Jon

 

[Chumpy]

Diane,
Yes I am very thankful for your site. It has helped us tremendously! Keep fighting a cure is coming! Thank you for fighting the fight and sharing your life with us In Hopes to help others!

 

[lgelb]

If by "too fast" during the day, you mean the interval between breaths is too short, you can decrease the trigger sensitivity setting and also increase Ti max if needed.

If he does not like nasal pillows, he might prefer a regular nasal mask.

 

[Chumpy]

I'll mention that info to the respiratory therapist and ask about the other mask too. Thank you