Another FVC question

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Bestfriends14

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I have not seen anything overt to indicate higher CO2 levels, but yesterday they registered at 47. We have an RT coming within the next couple of days to switch out the bipap for a portable one, along with nosepillows. This is to ensure Wayne can eat, sleep, and talk while wearing it 24/7. After reading your reply, I feel much more optimistic. Thanks, V.
 

lgelb

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As you have read, it is a very short procedure in radiology. I don't see where his CO2 would be a particular issue on BiPAP for that length of time. It's true that more hours on the machine and/or tweaking the settings (happy to help!) could be beneficial.
 

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Hmm, so many questions unanswered.
 

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If Wayne's CO2 levels decrease because of using the bipap at night, would that potentially increase his FVC numbers? We are meeting with palliative care next month for the first time when we go back to the clinic. Does this mean that they feel Wayne has limited time? I cannot seem to get a straight answer from the folks at the ALS clinic on this. His regular doc is on vacation until next month and the wait time is stressful. I am not fully understanding what they think of Wayne's sudden crash in FVC numbers.

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When we explored the options with feeding tube I was told that there are 2 different options, one w. radiology and one w. gastroenterology. The procedure w. gastroenterology seemed less invasive. The PA (University clinic/ specialist for that procedure) told me it could be done standing up and it was not proven by science that lower FVC would negatively affect the procedure. PALS did not want one. Thinking of you and wishing you and your husband very slow progression in the meantime.
 

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Thank you so much, Regina. I'm sorry your husband has chosen no feeding tube. That is so heartbreaking and the cruelty of this disease never ceases to amaze me. Big hugs to you in what you both are going through.

My husband cannot stand so he will have to lie flat for the surgery. The surgery is not concerning to me at all. What does concern me, though, is what I posed in the previous question. I've never been worried about what surgery entails as they refuse to do it currently anyway. I'm just worried about what the docs may be feeling/thinking in the plan they have set out for my husband. I cannot seem to get any straight forward, honest answers from the clinic.
 

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In all honesty the clinic and doctors may not be able to give you the answers you are hoping for. The only predictable thing about ALS is how unpredictable it is.
So the doctors see this huge range of things happen with PALS in regards to order and speed of progression, and how suddenly things can change. I can't of course say what they are thinking, but they may just be applying the sum of many things that still take them by surprise.
Linking in palliative care may be a truly great thing for you to do at this point.
May I ask, just out of curiosity, why your PALS didn't get a feeding tube put in some time back? It's always so awful when things suddenly reach a crisis point.

I hope you can find a way through this that works with your PALS wishes, and keeps you informed. We are behind you.
 

Bestfriends14

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He had refused a feeding tube back in June when they offered to him. Said he wanted to wait and think about it. I guess that didn't work out so well.

Thanks, affected.
 

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Reducing CO2 buildup will not affect FVC per se (though possibly it could make it easier for him to make the effort, so it could in that way), but it could slow his progression (the more buildup for longer, the harder to remove/balance out via BiPAP) and make him overall/the procedure more comfortable. You can try hyperventilating yourself even for a minute or so, and see how exhausted/dizzy you feel after.

There is a tipping point with CO2. Assuming the 47 measurement was collected with a meter that he breathed into, not a blood test, using the BiPAP more would be a good idea. But that level and his current FVC should not rule out a feeding tube. And better nutrition/less energy expending in eating (getting the energy) leaves more energy for other things.

[addition] So I think the burden of proof is on the clinic if they refuse to schedule -- medically, the literature is not dismissive of this procedure at this time at all. You might have to go up/around a few levels if you both want this to happen.
 
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Bestfriends14

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Thanks so much, Laurie. Good advice as usual.
 

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Let's say there are three questions here.

The first, that you have covered, but may be helpful for others, is, "Is it time for a feeding tube?" One study suggests that an ALSFRS-R bulbar subscore (the three items that cover speech, salivation, and swallowing) of 8 or less out of a max of 12, is a good noninvasive [not requiring swallowing tests] cutoff for scheduling tube placement, for someone who wants to keep on going.

After that, there are two questions: does the tube extend life? It's hard to do a controlled study of that question since we are not going to randomize whether someone gets a tube or not. The short answer is, especially if you have already lost a lot of weight, the data we have better support the tube's quality of life benefits than a survival advantage. Of course, data are limited by how long people wait, variability in how on point the chosen procedure and the people doing it are, and delays even after P/CALS decide, just as you're experiencing.

But the larger question is, apart from any impact of the tube, how much time is there, assuming you use the BiPAP to the extent needed? There is an online FRS-based calculator highlighting the probability of nine-month survival that may provide some insight, though it is by no means a crystal ball. You can also find studies illuminating some of the key favorable prognostic factors in PubMed, such as limb onset, maintaining BMI, and appropriate respiratory support.

And, as we've discussed before, most clinics are willing to share more personalized prognostic information from their experience, though they are trained to not necessarily to do so the first time you ask for it, so if you want it and have asked once, ask again.

Hope this helps.
--Laurie
 
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