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Vikman

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Joined
Sep 18, 2015
Messages
59
Reason
Lost a loved one
Diagnosis
09/2015
Country
US
State
CT
City
New London
So I'm trying to figure out if my dad needs help with his breathing. He says he has trouble breathing at night intermittently sometimes and same thing during the day but even less often. He has been feeling tired more during the day and sometimes has headaches.

The problem is hes in the tirasemtiv clinical trial so some of it may be attributed to the drug(like the headaches and fatigue). He has an appointment on Friday so I guess they can tell him more then. At the end of December his FVC was 83 so can't imagine it would have deteriorated that fast. Anyone think he might need some device to assist in breathing?
 
Perhaps a doctor will prescribe a BiPAP breathing mask for him to wear at night.
 
Steve is in that trial and when his breathing level was down at last clinic they stayed him in a trilogy/bi-pap machine. He went to the trial doc yesterday and is breathing has gone down again. He did catch a cold a couple of weeks ago so that may have caused it. Anyways let your father's doc know. He can have bi-pap while in the trial.
 
Agree -- FVC doesn't equal need for BiPAP.
 
Ok thanks for the advice!
 
Laurie- Are you able to explain FVC not equaling need for BiPap? What are the criteria when assessing for need?

Many thanks

Fiona
 
Hi, Fiona, your question is controversial in ALS. And the criteria that docs use may not equal what is reimbursed (which is why I stress the availability of relatively cheap used machines in that contingency).

Some of the criteria that are used:
MIP<60
SNIP<40
Orthopnea (breathing gets worse positionally, e.g. lying down)
CO2>/=45
sats >/=88% or less for 5 min
phrenic nerve dysfunction is gaining currency, if/as test is available
SVC better measure than FVC, many docs feel (50, 65, 75% have been used as cutoffs)
resp rate>/=18

and there is just the pt saying, I'm short of breath, tired, don't feel well, which depending on the payor and how good a letter the doc writes might or might not be reimbursed for BiPAP, but from a clinical standpoint, there is no down side in trying BiPAP and is likely to help so I would encourage such a person to get an rx (takes seconds for the doc to scribble on a pad!)
 
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Many thanks, Laurie. Sounds like some grey area.
 
Laurie, can I ask what are your views on the SNIP Test: simple or too simple??

Thank you,
Ells.

@ Vikman, apologies if I am intruding.
 
My FVC dropped from 83 to 60 in three months. So it's unusual to see a fast drop.
Patrick
 
Laurie, can I ask what are your views on the SNIP Test: simple or too simple??

Thank you,
Ells.

@ Vikman, apologies if I am intruding.

No problem Ells, its all information I could use too!
 
Consensus from research is, one measure to look at and will generally drop linearly, but can be skewed by being sleepy or unable to activate sniff muscles quickly/bulbar dysfunction. So could show more dire results than other PFT measures.
 
Thanks Laurie.
 
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