Pretty bad news

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nebrhahe53

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Lilacs if you don't mind my asking, how long has your husband had als? Has he seen a respiratory therapist? I wonder if atelectasis ever improves. It's been pretty amazing, over the last 6 months I've been given a lifespan of anywhere from 4 months ( beat that one already) to 5 years. I guess one of them is bound to be right.
 

affected

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Neil
Lilac is the PALS and she was diagnosed in October last year :)
 

nebrhahe53

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sorry lilacs I meant to ask gooseberry and i already see the answer. I guess I have been really out of it lately. I wonder if my mind is not being affected in some subtle ways. anyway thank you all for the support-it means a lot.
I challenged my Dr on those numbers and his comment to me was i has his permission to live as long as I wanted-it was just an estimate.
I guess with this disease no one knows.
Tillie-Ive always liked nature. How about you name one of those trees your planting for your koalas for me-id like the thought that I was helping to shelter those cute things, plus I get to be in Austrailia, somewhere I've always wanted to go.
 

gooseberry

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The atelectasis has not improved but has stabilized since he started the bipap and cough assist. I dont know if they had anything to do with it though. He has had it from diagnosis. ;)
 

lgelb

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Neil,
I am sorry to hear about your daughter's mom. I would suggest that if possible both of you talk with your daughter together about paperwork, personal possessions, what is where, what your wishes are for yourselves and her, etc.

If the patient is in the Austin area, she might check out this trial. If she is elsewhere, I would definitely search the PDQ trial database as I just did; my mindset is pretty much at late stage Ca to be in a trial until you are done fighting; I worked at M.D. Anderson, where >50% of pts are in trials.

If you get RT through a home health agency after being evaluated and approved for home care, Medicare will pay for these skilled services @ home like OT, PT, RT as ordered by your doc. Most of the respiratory DMEs have RTs on staff who can advise you also, though that's kind of off the books. Of course, the caveat w/ traditional RT is they tend to be invasive since they typically see dz where this is of benefit. I believe other posters are correct that you should at least see a pulmo (MD) with a neuromuscular focus who can also order services for you if/as desired. Do they not have one affiliated w/ your clinic?

The idea of lung cell deflation is scary but Larry lost 40% of his long before ALS and lived w/ BiPAP 11 yrs after PFTs demonstrated that and CT demonstrated a diffuse dz process. So having X much atelectasis is not definitive. The last few yrs, definitely periodic crackling but we focused on his breathing comfort and that actually decreased the mucus because his airway was less stimulated to produce it; saliva was more the issue but most of the time he was still able to cough it out himself onto a paper towel. There is breathing as measured by Vt/PFTs and then there is lesser-of-the-evils breathing -- these are not the same goal. Look for someone -- RT or pulmo-- who understands that.
 

Lilacs53

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That's okay Neil, there's a lot of us here and it's easy to get us mixed up. lol

Tillie, your generosity to Neil has brought me to tears. What a good heart you have ...just a kind person you are. I am glad to know you as well as the others here. You go beyond the call of duty to help others out ... what a legacy you are making for yourself. :)

Max, it's good to see you, I know you haven't been feeling lately. Hope you more good days & hope the bad days will go away.
 

Nikki J

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I have moved the posts that are solely related to trees to a new thread in other
 

nebrhahe53

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>definitely periodic crackling but we focused on his breathing comfort and that actually decreased the mucus because his airway was less stimulated to produce it;

LGELB how did you focus on breathing comfort?
 

lgelb

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OK, first, Neil, how can I call you Neil if you don't call me Laurie?:)

I don't want to sound repetitive w/ all the BiPAP settings stuff, but some of what we did...YMMV, I think you were bulbar onset so it is different...

1) Reconsider the CoughAssist and/or suction machine. Note whether they really end a coughing ep or prolong it. We never had a CA and stopped using suction the last year or so. We did use the papaya as mentioned on your recent thread. Sometimes cough syrup (not decongestant type).

2) A thousand (not) times a day or so, Larry "spit" excess saliva into a folded half paper towel we held for him. Especially after waking up, before and after meals, and before sleep.

3)He was also on BP meds for his aneurysms and some prob helped somewhat w/ mucus as a side effect. I would track your BP and if it trends up, certainly consider antihypertensives because your system is stressed enough already.

4)ClimateLine tubing/ResMed machines (had its own thread)

5)Increased minimum Ti (inspiration time) when he coughed. Cranked it back down when he wasn't to avoid air trapping, esp. at night.

Cranked down settings overall in the last year -- like I say, IPAP 15 max/10 min/5 EPAP is a place to start. But volume-based ventilation unless you have major pre-existing apnea (and maybe even then) is better (the S9 ST-A or the Astral, the latter just being a souped up more portable ST-A that can handle a trach). So then you just set a Vt target (I lowered that as we went along; permissive hypoventilation to reduce cough reflex/for comfort; may not work as well for others, poss greater risk of pneumonia if food is getting stuck) along with a range and the settings adjust to target. Like the AVAPS mode on the Trilogy but one that works better.

Also -- no shortcut I can give -- have to make sure trigger setting is "very high," probably and cycle depends on your pattern. Not sure Trilogy has cycle setting anyway.

6) Circadiance Sleepweaver cloth nasal mask -- I don't believe your fragile facial/glottal musculature needs heavy plastic on top. And heat is more a factor w/ a heavier mask, too.

7)Nasal steroid (Nasacort) morning and night. Sometimes Nasalcrom. Sometimes an herbal inhaler (Olbas). We used steamed essential oils early, then stopped. We avoided decongestants totally bc of heart issues. YMMV but they can dry secretions that then coat the tubes/nose anyway. I don't use them myself.

8) Tried not to use central heat. Used heated mattress pad (bed) or blanket (in w/c) instead. Always had fan on during sleep. Used A/C consistently in spring/summer. Good to go outside/open window after rain for fresh air!

9)Fast melt loratadine tab in am.

10) Is this a top 10 list? Never lie flat. Even for medical procedures, bring real pillow. Head, feet always somewhat elevated in bed, alternate w/c positions as frequently as you can.

11) No, top 11 --- baby nasal aspirator (blue, long tip) for mucus, morning/night

12) Only air freshener/spray we used around Larry was pure orange oil, no chemicals, never at face level, always below. No disinfectant or other irritating sprays. No vacuuming w/ him in room, etc.

I'll post whatever I forgot later. And once again...you have to do what works for you. Which means you have to ask, so to speak.
 
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