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Oct 11, 2006
Friend was DX
My friend Joe wants a vent; he wants to live. I know that. The trouble is that he cannot speak or eat any longer, though he uses a feeding tube and a laptop speaking device and is otherwise still ambulatory. However, I have gone into his apartment to add Jevity to his tube-feeding apparatus at night and found the bipap alarm sounding and sounding, not turning off as it should when he takes a breath. He tells me this is because his inhalations are not strong enough to trigger the machine to switch the alarm off. I worry that in fact he is not taking a breath at all for several minutes, but that the bipap is essentially breathing for him. We both have schizophrenia and have never been able to travel so we were planning to go to Disney World in May. Today my doctor told me that this problem, of the bipap alarm not turning off, signifies that Joe could die in his sleep at any time. She worries that he won't make it through May. But the out-of-state ALS Clinic he attends has not even mentioned this to Joe nor once brought up the issue of a ventilator. I don't think they even know his wishes in the matter. It's like they are simply waiting for him to die, so they won't have to deal with it. Is he in danger of dying? (His FVC is under 40% and without the bipap his nighttime O2 saturation drops to 60% at tiimes) Should I or someone tell him? What are the steps necessary towards getting a vent? We live in Connecticut and he is on Medicare but not Medicaid. He does have some money. I'd appreciate help in this if anyone knows what to do. Thanks.

Pam W

I read the recent thread on vents and it was very helpful but it couldn't answer these particular questions.
Hi Pam. I'm not sure about Connecticut but quite often the docs don't tell you about a vent unless you ask or insist on it. It sounds like he needs a Respiratory therapist to come and check his Bipap settings. It should not be alarming like that. Try to get hold of someone to check on him. Maybe some of the others know about your state laws and can help.
check these out,

Sometimes it pays to check out all the facilities in your area. My bipap will sound off if there is a leak in the seal around my face. This might be his problem. Here are some local places that may provide better care.

ALS Association, Connecticut Chapter
4 Oxford Road, unit D 1-2
Milford, Ct. 06460
Phne # (203) 874-5050
Anne Devino, M,S,W, Executive Director

Motor Neuron Disease Cliinc
University of Connecticut Health Center
263 Farmington Ave.
Farmmington, Ct. 06030
Kevin Felice, D.O.
I called the RT and he came out to change the settings and check the mask and bipap. All were adjusted and set correctly...But just last night the problem continued on and off throughout the night. Once in a while, Joe would sleep peacefully for a half hour or so before the alarm started up again, not waking him but worrying me. I don't think the problem is with the machine...

Joe's voice is getting softer and softer and he says his throat muscles do not work anymore to bring up mucus. His diaphragm has been "soft" for months so he has been breathing with his chest muscles alone. He also complains of dizziness, which no one can figure out the cause of.

We know about the services in CT mentioned, but it has been difficult getting help from ALSACT because of Joe's getting treatment out of state. They don't seem to want to help someone who is not attached to the U-Conn clinic. In any event, we need a local neurologist at this point, first of all, so someone can monitor him and be aware of his wishes in this respect. His pulmonologist knows, I believe, that Joe wants a vent, but we dont see him for another month and the last visit, he said Joe could stay on the bipap for a very long time before a vent became necessary. If that is so, then why is the alarm going off as it is?

No, the RT told me over the phone in fact that this is NOT a good sign, that it is Joe's breathing that is causing the problem, and that he could die this way. So what do I do, when no one else is talking about it with him?

You might carry him to the emer. room or call abulance
to carry him to local hospital. They should take care of
his breathing.

Davis 07
Hi Pam. I hope Joe's night goes better than the last few have. Sounds to me like you are trying to be a good advocate for him, which he probably needs right now. Who wouldn't, if a person is having trouble breathing that usually means they are more oxygen-deprived and therefore weaker.

So, as his advocate, let's don't forget that old adage about the squeaky wheel. We don't like to be persistent but when all else fails sometimes this is the only thing that works! Good luck and let us know how this gets resolved. Cindy
Pam --What model of Bipap is this? ALS folks need to have the S/T models--make sure he has this. The S/T models will pick up and 'breathe' if a person stops is very important for PALS to have an S/T model...I believe only Respironics and ResMed make these. (The T refers to 'timed' breaths versus spontaneous) It is one thing to check, in case your RT is unaware of this need.
Perhaps you need to consult with another RT--ALS is tricky but people can often live for quite a while on Bipap.
I really feel for you two---so tough to deal with these type of breathing problems....good luck with this...
Joe had a better night last night, thank God. I stayed up with him until I was sure that the machine alarm was not going to ring and ring and not turn off. But it seemed to work right this time; it would turn on, ring about three cycles then go off when Joe eventually took a breath. I was even able to sleep well myself, after staying with him while he slept for about 3 hours. Today, Saturday, the RT came again and brought a new mask, just in case. She fit it on him, and decided to have me or our friend Karen help him put it on each night, rather than have him put it on over his head the way he has been doing, which changes the adjustment each time.

There was a big leak yesterday, when the bipap worked fine, and a tiny one tonight...Hopefully all will still work okay. As Joe, a former engineer, pointed out, the leak in the mask was evidently not causing the alarm to ring, as it has been leaking ever since he got it (we could hear it) and the alarm just started going off about two weeks ago. Whatever the case, I was just glad that last night was a good one, and I will watch him to see how he sleeps tonight.

As I mentioned in my first post in this thread, both Joe and I have had schizophrenia for years and I do not have many other friends to turn to (only Karen) nor a lot of experience in knowing what to do when things go wrong. I appreciate all your help and support. I really do.

Pam W.
Can't suction mucus

Sorry, folks, but there is another problem now, which I tried to find answers to by a search but didn'[t easily come up with anything.

Joe has a big problem with thick secretions and mucus stuck in the back of his throat that he can't cough up well. I mean, he does cough it up -- weakly but manages to get some of it up -- but can't move it from the back of his throat to his mout. He must lean forward to let gravity do the work. But this is not working well and the mucus strands are getting thicker and thicker -- some are huge and ropelike. I asked him to try the suction machine again, but he said (typed) that he couldn't, because it only broke the strand and let half of it fall back into his throat. It could strangle him if it blocked his airway. I am not sure I know exactly what he meant, or even if I got the explanation right, but he says in any event that the suction machine doesn't work. It doesn't go low down enough to get the mucus out, even using it at the side of his throat and slowly rotating the wand as my nurse suggested.

This too is scary because I'm afraid he could suffocate one day on the stuff. And what happens if we try to suction him because that's all there is to do, and it breaks the strand? Oh, god, I'm just so scared I'll do something critical wrong. But when he can't get the mucus out himself, Karen and I will have to do it, and then how will we do it but with the suction machine? Is there any other way?
Hi, Pam. there are some good ideas about dealing with similar problems in another thread called 'choking on' I don't know how to put in a link to it, but it is recent, so I don't think it will be too hard to find. Do you have a cough assist machine? That may help, used in combination with the suction machine.
Hi Pam,

Make sure Joe drinks lots of water all day long. That should help thin out his secretions. Also, what does the display on his Bi-Pap say when it is alarming?

You know, quadbliss, his room is so dark, I never looked at the BiPap machine to see what it said when the alarm rang. I simply woke Joe up to take a breath if it kept ringing. I didn't know the machine would say anything at all! Next time I am down there, I will take a look. As for drinking, now we are told that because of his trouble swallowing, esp of thin liquids, he should get all his hydration through his feeding tube, the way he already gets his calories. Will this affect his secretions in any way -- meaning will it change anything? He has always been a great water drinker, carried it wherever he went, but I will remind him to add enough water to the feeding tube bag to make sure he is getting 8 glasses a day. He does use the cough assist now. In fact, I showed him the thread about the "" hboyajian mentioned above and he immediately got up to use it! All of that helps both of us a lot. We are supposed to go to Disney World (Epcot ctr) in a couple of weeks and can't bring the Cough Assist with us, because we are bringing the kangaroo pump and Bipap machine already. I don't know if alla-vert or albuterol are effective or useful short-term or not. Has anyone here tried them, and do they work?
Ok, look - perhaps others are afraid to say it (and I'm not the be all - end all ...I"m just giving an uneducated opinion that isn't worth squat) but, if your friend wants a vent, you need to insist on one now. Because it sounds like it's time (or past time). Probably the quickest way to achieve this goal is to take him to an ER and insist.

If that route isn't going to be taken, look into obtaining hospice care for him so that he will be made as comfortable as absolutely possible and so that you will have the support you need (physical and emotional) to carry on with his care.

I think I speak for everyone here when I say that we are all thinking of you and your friend, Joe.
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