Breathing Percent

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tripete

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Dec 5, 2014
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PALS
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12/2014
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US
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PA
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Lancaster
What is the MIP and FVC percent at or near the end for most PALS?
 
They can be really low or not. Steve is below 30 % for fvc and mip is 8nspiratory pressure. Steve's is 20% An infection could take its toll or not. With als you just dont know
 
There is no set answer for that, Pete. I think it's safer to say that when someone has air hunger that adjusting the BiPAP can't address, death is not far off one way or the other.

Best,
Laurie
 
Pete,

I looked at the entire article. I've talked to my ALS doctor and my pulmonologist. They even have differing opinions, especially as it relates to FVC since that can be affected by so many other things....including the lab at which is is measured. I've had PFTs in three different labs (including Mayo and U of F). The one ALS doctor says the best indicator is breathing muscle strength (diaphragm and intercostals); the pulmonary doctor relies on FVC, TCL and a couple of other gas exchange numbers.

Interestingly, I got the best insight on my particular situation from Laurie when she said my sleep study could have been affected by taking benzos. I had upped my Valium and was taking one right before bed. I cut it out and I slept better, with fewer awakenings. To make matters worse, during my sleep study I had taken an extra Valium just to get to sleep.

I think we have to go by what Laurie said about the air hunger but remember that anxiety can make air hunger worse. Anyone who has ever had a panic attack can attest to that.

I hate that we have all these different things to contend with.
 
I was prescribed diazepam by my pcp. At my clinic, the specialist explicitly ntold me not to take benzos for this exact reason.
Marty
 
I was prescribed diazepam by my pcp. At my clinic, the specialist explicitly ntold me not to take benzos for this exact reason.
Marty

Neither of my neuros mentioned it.....and I take both Valium and Xanax. I asked my pulmonary doc and he said once I got the bi-pap I wouldn't have to worry :confused:

Problem is that Valium and magnesium help the muscle spasms.
 
Kim,
My breathing has gone down quite a bit during the past year. Maybe that's why they didn't want me to take diazepam. Said it wasn't good for my breathing.
The diazepam really didn't work well for my cramps. So it didn't matter to me.
She prescribed 300mg of Quinine Sulfate for the cramps. That with heat has eased them significantly. They were terrible!
Marty
 
Marty, I'm so glad to hear you got relief from those terrible cramps. I know you tried everything under the sun. I'm glad the Quinine Sulfate helped. My heating pad broke today......I have bad butt cramps and sitting on the pad in my padded chair helped a lot. I'll have to buy another tomorrow.
 
Pete,

That book repeats a bunch of papers that essentially look at population data sets, if any. It was published in 2010, meaning written in 2009 at the latest, and not up to date on issues like SVC vs. FVC in ALS. One of the papers it quotes most heavily was published in 1999.

I haven't seen those particular numbers to be thresholds in real life for the end of life. For example, we have many people here who have lived years with FVC<30%. My husband was one of them. I can tell you that the literature on his other rare disease, Marfan syndrome, is equally lame and applied to few people on the Marfan list of which I am a member.

Physicians like to reduce uncertainty for themselves, and this book purports to do that, but it's a feel-good for docs, not written for you. Syndromes are like that.

Best,
Laurie
 
Steph, Steve and I still seem to be paralleling each other. I would guess from what you write that he is 3-6 months ahead of me in progression :( .

Laurie I appreciate your experience and willingness to help. I get frustrated that we are unable to put any sort of indicators on anything. At least the book gave me some clue of understanding that at certain percentages that doctors will be looking at this or that.

It is unbelievable to me that for as many years as ALS has been called ALS that we do not have some sort of at least general guidelines. Air hunger is just to generic of a way to put it. I suffer beginning in the hours following lunch everyday with air hunger. When I first started looking into what was wrong with me it was because of breathing problems. But the doctors told me nothing was wrong because my first FVC was over 170%. But I knew something was wrong and it turned out to be breathing onset ALS. So everybody's experience and feeling of air hunger will be different, there has to be a place or a way of understanding where and when the body will say enough at least with in a certain degree of confidence.
 
I wish there was a play book to help us to get get along with disease , but no such luck. The biggest thing for us is that no ALS patient is the same. Each of us has a different story to tell. As of today I would go for the trach when the time comes. My FVC is at 30. But I know they look at other specifics. Including blood gas exchange. I have spoken to my pulmonoligist even he has a problem answering my questions.because there are to many variables. I go to National Jewish Hospital in Denver and they are the best in the country on respitory issues.
Patrick
 
Pete, Steve just went thru a time of fast progression. He has stabilized again but is now using his trilogy for sleep 12 hrs at night and most of the day while he is up. His right foot is still useable but going quickly..he could offer no resistance when the docs applied pressure.

I thinking breathing onset is different since you can walk and use your arms but cant breath. It is the opposite of a lot of pals. The pulmo steve sees said he may be using the trilogy 24/7 for years but he may still progress. He sits in one corner of the couch.. Now he is bracing himself in place. He does this in the shower also. His core is very weak.

Steve was diagnosed 7 months before you.
 
Steph they are also telling me I should be on the trilogy for most of the day. I only use it at night though. The reason, simple, I do not want to prolong things. I have the same core problems as Steve, though not quite as bad yet. I can still use all limbs but it is getting increasingly difficult.

I think breathing onset is a different "version" of ALS, a rare one. That said I still think there must be some things that can be determined to give us guidance. It would seem that any first year statistics student could gather all the MIP, FVC data that has been collected for around 80 years and start to create some good guidelines to help us anticipate our paths and futures.

I have never been a planner but someone who "flies by the seat of his pants" this disease has tought me how limited my time is and the necessity to plan. At my last clinic the doc said he would not be surprised if I was dead with in a year. Nobody of course knows that time blah blah blah... None the less it is helpful for me to know this, now I can try to prepare things in a different way then I might if it was 2,3 or 5 years.

So for me the more information the better.
 
Actually Pete, Steve says less than a year for him. The pulmo at va is doing a study with fvc,mip,mep,etc. Usf is trying to measure peakflow cough with a handheld device vs breathing muscles to correlate them. We were told by the speech path doing the study 200 on the flow meter was high risk of aspiration. Steve has been 150ish for 4 months.

He does not use the trilogy to prolong things rather he uses it for comfort. He is struggling to breathe sitting on the couch right now. So on goes the trilogy.
 
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