Another FVC question

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Bestfriends14

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Hi all,

This is similar to Samkl's question, but I did not want to hijack the thread. Anyway, today has been a fairly horrible day at the clinic. We were not expecting the news we got, so I'll try to keep my question succinct and not ramble from nerves.

Wayne's FVC registered at 34 today and they won't do the G-tube procedure right now. They want to wait another month and see how good he gets at using his bipap, whatever that means. This is because that's the only way he can get through the surgery, as he'll need his bipap throughout. Has anyone heard of this type of wait and see approach?

His numbers have gone down by 60% in less than a year and I think waiting a month will make his numbers worse. I'm not sure what they mean by "waiting to see how well he uses his bipap". His regular respirologist was not there, so we really did not get the thorough explanation she would have given. I'm sick with emotion after today's clinic.
 

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Hi, I am on my ventilator 24/7 and just had my feeding tube placement surgery last week. I did it without anesthesia. I had localized numbing shots, and the air tube was threaded through my nasal passageway with my nasal pillows in place.
Talk to them, it's his surgery. I learned from some lovely people here that the Doctors work for you. And you have the right to make the decisions
 

Bestfriends14

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Thanks, Dee Dee. Yes, that is the exact procedure they mentioned they would be doing. I'm just not a fan of the waiting another month to see about his bipap use. His breathing will just get worse during that time period. Oh well, I know there's a reason they are saying what they are saying, I guess. Wayne is not on bipap 24/7, but I think they want him to transition to that and then do the surgery. 🤔

What a nasty surprise today was.
 

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I suggest you look into a RIG rather than a PEG. The RIG procedure is usually performed by an interventional radiologist, and apparently requires much less sedation than for a PEG.

Doctors have pretty much ruled out a PEG for me (low FVC), but the interventional radiologist said there would be no problem placing the feeding tube with a RIG procedure.

Note that some folks refer to a RIG as a PRG (percutaneous radiological gastrostomy).

Steve
 

Bestfriends14

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Thanks, Steve.

I believe that's what they will be doing. Glad to know that there should not be any issue with placing a feeding tube. Phew!
 

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He’ll need to be on BiPAP for the procedure, but waiting a month to get used to BiPAP makes no sense.
 

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Agree totally with Karen. If he weren't using the BiPAP, I could see saying they'd like him to be on it first, but he is...so no point in waiting until he's on it 24/7 -- that would only mean that his respiratory function had become worse -- how could that improve the safety of the procedure? And given the variable state of the pandemic, though I realize Canada is in a considerably better place, I would schedule a RIG ASAP.
 

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I would be asking them to book him in now, because I it could be a while before they have the first date available, so in that time he can be getting used to using the bipap. I'm thinking you are saying he has just started using bipap?
 

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Thanks all. He's been using bipap for 2 months, so it's not like he's unfamiliar with it. I wonder of they want to wait for his regular respirologist to come back from her vacation. She's not back until September, but I think that's foolish. He's going down an average of 5% per month. That would make him 29 by the time we go back to the clinic. Nevermind the fact that when we go back to the clinic, there's no surgery booked yet. We'd have to wait from there. I'm confused and far too emotional to understand what's going on.
 
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lgelb

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There is nothing in particular that the pulmonologist need normally do before, during or after the procedure. In many centers, the pulmonologist, who may be only part-time with the ALS clinic, might not even be aware of it in advance.

The necessity of using the PALS' BiPAP during the procedure should be part of the Radiology standard order set anyway for a RIG for a PALS who uses BiPAP. In the Internet age, it's also a rare physician who can go on vacation determined to remain completely unreachable, at any rate.

I would call or email and express your concern, and ask for a clear rationale for the delay. Absent one (which I'd be interested to hear!), you have the right to request/demand a first-available slot in the schedule. That sounds more adversarial than it is...I am sure you know how to be nice but firm.
 

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My PALS just had the procedure done 2 weeks ago. It was a RIG. He said it was easy and he didn't have a problem using the bipap during surgery.
 

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Thanks everyone. I've already reached out and asked for the surgery. His food and water intake is down significantly. It just takes too much breathing and it makes him gasp when eating or drinking. Because of this, I estimate he is getting about 1000-1200 calories per day. I told this to the doctor, as well, but he still wanted to wait a month. I do not get it.
 

Bestfriends14

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OK, I found exactly why they won't do surgery. It's because they think he will die on the table because his CO2 levels are so high. We go back to the clinic in two weeks and they will have someone from palliative care to discuss end of life, should the bipap not work on the CO2. Great...
 

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Bestfriends, my PALS is on Bipap 24/7. His respiratory function decreased rapidly around March of last year. I swear he had a lot of CO2 retention given his symptoms (inability to sleep, no appetite, foggy thinking, some urinary incontinence). When he started using bipap at night he improved within a week or two. His need for the bipap has increased steadily over the past year and a half to where we are using it all the time. Just wondering if you are seeing any of these indications in Wayne. I would try bipap 24/7, I'm no expert but would think he would improve rapidly.

V
 
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