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BethU

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OK ... the feeding tube placement didn't quite go as smoothly as I may have indicated, but it had nothing to do with tubes, ALS or anything neurological. Here's the true story.

A year and a half ago with the same gastro guy, I had a routine colonoscopy at an outpatient clinic, and they knocked me out instead of the usual twilight sleep. When I woke up, I had all the symptoms of my heart attack 15 years ago ... very short of breath (very), nausea and dizziness. I don't know how I can tell shortness of breath from heart as opposed to sob from lungs, but I can.

In recovery, I told the nurse what was happening who told the doctor who ordered an EKG. I was getting worse & worse. Turns out they had just gotten a new EKG and it hadn't been put together yet, and nobody knew how to put it together (!) and they're all running around like Keystone Kops. This is just one more chapter in "me and hospitals." I was lying there with my eyes closed, and several nurses were talking about what was going on, and they concluded that I had been given much too much fluid and it was causing heart failure (pulmonary edema). So there was a screaming ambulance ride to the hospital to find a working EKG !, and I eventually pee'd all the fluids out and was fine again and they let me go home about midnight.

So for the feeding tube last week, I wrote out all my warnings ... low b/p, wearing a med patch behind my ear, etc., but forgot to mention "don't give me too many fluids."

Well, when I came to last week, there was the same sob, dizziness, nausea ... but this time I couldn't speak. Paul was sitting with me ... my niece was tending other relatives in the waiting room ... and he can't understand me without the Light/Writer. The sob was gettingn worse. I checked, and they still had the IV drip going.

So I'm waving frantically at the nurses, and one came and couldn't understand me. I was getting more and more short of breath. I tried "please turn off the IV." She patted me on the head and went away. I waved more and we went through this routine 3 or 4 times, while I tried to think of anything I could say that she might understand.

Finally I came up with "STOP FLUIDS" and just kept screaming it at her over and over, and she finally made an attempt to understand me. "Do you want the IV out?" YES!

So ... I survived. But it is scary in this world without a voice. Actually, it's scary WITH a voice, too, come to think of it.

---------------------------------------

So the tube is working great.

Now I am (still) trying to get my BiPap hooked up. They delivered a machine with a dial from 1 to 5, and the guy said to turn the dial to 3 or 4 in the summer, and 2 in the winter. I typed out "I don't think that's how a BiPap for ALS is supposed to work. It needs 2 calibrations." The RT patted me on the head and said it was correct. Then he tried to fit me with a nose mask, and discovered that I can't close my mouth ... it is drooped significantly to one side ... so he set off to get a full-face mask. BUT ... I suspect they won't get a good seal with that either. There is significent distortion of my mouth. My ALSA rep said that if he brings a mask and opens the package, that is the only one blue shield will pay for, whether it fits or not.

This struggle over BiPap has been going on since November. I have obtained written prescriptions from UCLA, then my PCP, and now they want one from UCLA again.

I suspect this is going to be a lose-lose situation ... I've already done a sleep study with a full mask (previous sleep studies showed I don't have sleep apnea [this was before ALS] but the doctor wanted to sell me the machine anyway, I assume because there's such a big profit on it.) Anyway, after 4 hours with a full-face mask on, I still couldn't fall asleep ... I always sleep on my stomach, and that doesn't workwith a full-face mask. So they put down "cannot tolerate" and that was the end of it till now.

I had asked the RT what my air-flow settings would be in and out and he said "19." I told him there should be 2 different #s and he shrugged.

So I have half a BiPap machine set up in the bedroom. But I'm getting closer. Last week I didn't have any part of a BiPap machine set up in the bedroom.

ANYHOO ... thanks for letting me share. I won't even go near the DynaVox situation.

The only good thing is that my Blue Shield rep is writing up a notice to the insurance company for unacceptable performance by the BiPaP provider..

All this, by the way, is with my insurance case worker, my ALSA rep and my niece all making calls numerous times a day to the various people involved. It's my ALSA rep who is kicking the most butt. Imagine if I had no advocates, like a PALS in Texas we all know ...
 

crystalkk

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Beth,

You can vent as much as you want... you surely have reasons to... I hope all of this gets straighten out.
 

Al

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Beth, it sounds like they've given you a CPAP. They only have one number and 19 sounds awfully high for that. Bipaps have 2, mine is 18 for inspiration or IPAP and 8 for exhalation or EPAP. Next time these yahoos show up at your place, ask them if they know the difference between IPAP and EPAP. If they don't, throw them out. Such incompetence can literally kill you.

AL
 
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brooksea

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It seems pALS everywhere have living nightmares to tell about! Glad you lived through it all, by the way. :p Hospitals are VERY DANGEROUS for anyone and especially pALS!

Don't you love the patronizing? Obviously this RT of yours has no IDEA what a BiPap is let alone ALS! We have an RT in our small town from the local DME/pharmacy. Even he knew what ALS was and knew exactly what my husband needed.

It is so frustrating to have this disease strike you or a loved one in the first place, but to deal with the morons in the medical "profession" (no offense to those non-morons);) sometimes is beyond what one should endure!

Good luck to you Beth! I enjoy reading your posts.
 

rose

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Beth, can you take a picture of your machine and post it on your profile page? I think the dial may have been the humidifier part of it, if you have respironics. I have a dial that goes from 1-5, and it is the amount of humidity, THe actual air pressure should be calibrated before it arrived at your house. If you have any sort of mask there to try, when you put it on, does the pressure cut back when you stop breathing in, or does the pressure stay the same? My machine (with the dial that goes 1-5) says "bipap plus M series" on the top cover. There also should be buttons you can push, one of which turns on and off, and one should ramp the pressure up gradually..
 

Zaphoon

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Beth,

The negligence and incompetence regarding your recent care is down-right scarey. I'm with Al and his recommendations.

Zaphoon
 

olly

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hi beth

i'm so sorry to hear about all your going through,you have enough to cope with without any more burdens.
there is not the care in the medical field like there used to be,everything is about money ,stastistics and quotas.
can you call your neuro or gp about the incorrect bipap ?
i am still waiting for my afo among other things,its the same here as it is there.
one of my worst virtues is i am very impatient,i hate waiting around for other people to get there act together.
you and hubby are in my thoughts and prayers tonight:)
 

BLPhill

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nicely said Al, I couldn't agree with you more. I am so sorry for you Beth, I have first hand experience with the medical community incompetence. Thank God you have family speaking for you.
 

Sammantha

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Oh my gosh Beth, this is why i get upset with docs who say maybe your depressed... When you have had a couple of near death experiences fighting for your life, you never take it for granted! Maybe you get sad or anxious, but never take it for granted. I have had a few instances, one when they gave me a breathing treatment during my gallbladder surgery and another with the heart and sob issues.... for some reason steam is my enemy.... I in NO WAY compare to you but i could cry just reading that and picturing that, it reminds me of when someone is drowning and waving for help and people smile and nod at you like oh, hi are you having fun out there? Meanwhile you are fighting for your life..... very surreal....... and you are a strong woman and now have the feeding tube you need! God Bless, Sam
 

sharonca

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Wow Beth! What a story. Glad you are still here with us. Good idea to have you post a picture of your "machine" whatever it is. I need a full face mask but haven't asked for one yet. I know I'll have to pay for it.

Sharonca
 

BethU

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Thanks, guys, for your support and expertise ... I think if they put this stuff in a situation comedy, no one would believe it.

I now have a mask ... and Rose, you are right, the dial on top of the unit is for humidity ... and clear proof that they delivered the wrong machine ... probably a Cpap. My ALSA rep stressed to my niece and me that it had to be an ST model to be able to calibrate it for a PALS.

These are the explanations I got from the "therapist" who delivered it as to why they delivered the wrong machine: Yesterday, when he delivered it, we asked the therapist, and he said it was an ST model. Today he said: No, it's not an ST model, but they are not making the ST model any more. Then he said this machine is much, much better than the old ST models, so it doesn't matter. Then he said they are making the ST but it is really out of date. Then he said his company doesn't carry the ST because it's made by a competitor, and it will take them 2 weeks to get one.

So we went round and round and he wanted to know if I wanted to keep it or not. I told him that wasn't my decision ... it was up to the doctors, and I would confer with them.

The thing about the ST (Sharonca, this might be relevant to you) is that it has THREE calibrations. The expiratory, inspiratory and a "back-up rate." So the calibrations my pulmo sent to the company were 12 over 6 with a back-up rate of 12. The vendor just ignored the third calibration, since the model they delivered couldn't accommodate it.

So I tried the full-face mask for about 5 minutes. Because I can't close my mouth, the inhale blasts air directly into my mouth and throat and puffs my cheek out. The exhale makes little fluttering and razzing noises around the edges, which I think means there's not a good seal. After 5 minutes with the mask on, my mouth was so dry, I literally couldn't pull my lips from my teeth. Had to go to a sink and splash water to put everything back in place. And I was using the humidifier.

It's clear to me that this will HAVE to be used with a closed mouth. I asked him about a chin strap and nose mask, and he said the strap would "damage my jaw" and give me a lot of pain. :roll:

This guy reminds me of the old Reagan saying: with this much bs around, there's got to be a pony somewhere!

Anyway, how this will end is that after we all jump through enough hoops, I'll eventually get a chin strap and a nose mask and make it work.

Love our health care "system."

Sorry these posts are so long!
 

rose

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Beth, my first mask (which did not fit), was a nasal pillow mask with a chin strap. ~ I sleep with my mouth closed by the way. The strap did not keep the air from puffing out of my mouth though, and it was just miserable all the way around. If you look at an online cpap supply store (if you can't find the one I'm speaking of, let me know, just don't want to make a hyper link to it on the forum) they sell a mask that is a mouth insert, it blows the air into the mouth rather than nose or nose and mouth. I think it is fitted in the manner that a mouth guard is made, with moldable soft plastic that is initially heated and then molded to fit the individual's mouth. It fits inside onto the upper teeth, and the person can sleep with their mouth open that way.

You know how I have the dry mouth anyway, I was ready to try it, but the mask I got that fits me, and the calibration change with my machine makes it so that the air doesn't puff out of my mouth anymore, and I don't get the dryness.

I believe there is only one manufacturer that make the mouth type mask, so you should be able to find it online. If the care facility that you're dealing with won't order it for you (as in pay for it) you can order it and purchase the extra return insurance if it won't work for you, but optimally you want that company to provide you with it to try. I agree wholeheartedly that the chin strap is not going to work, because it may keep your jaw closed, but it won't seal your lips.

Let me know, (hugs)
 

sharonca

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Beth - I sleep with the chin strap and it helps - maybe as a reminder to keep my mouth closed. I wake up with air going in my nose and right out my mouth! The solution for now, since I can use my arms and hands, is to sleep with my hand under my chin to keep my mouth closed. Lip seal is difficult for me at any time - just the way my lips are made - unless it is a conscious decision. I try to keep my tongue against the top of my mouth to keep the air in my throat. When my tongue goes I don't know what I'll do.

I thought you treated at UCLA? Their RT is great and provides the bi-paps through his company. I had a problem due to living so far away so I got mine through another company that is not that knowledgeable.

Sharonca
 

Tfisher

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Boy! What a nightmare(s)! As if things aren't challening enough huh? Glad the tube is working for you. Your posts are never too long.

Take Care
Tfisher
 

brendapals

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Beth
Wow, what a bunch of fun you've been having!;) You are one of the toughest women I know in this big cyber world, I'm sure everything is going to work out fine.

I used the chin strap for about a week, that's how long it took my brain to "learn" to sleep with my mouth shut! I'm still going to try to get the nasal mask like rose was talking about, but there's no power at my equipment place, so I'll try again after the big thaw.

You may have to design something like the others were talking about-a picture, or something with your machine on it, course then you'd probably have the kind of luck I have, and someone would pat you on the head again, and say something dumb like " oh, yes, honey, that IS a pretty picture!":p:p
Hang in there sweetie,
hugs,
-b
 
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