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fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
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03/2008
Country
US
State
VA
City
Harrisonburg
We're having a terrible time getting my husband set up with BiPAP. First of all, on May 21st at our initial visit to our local ALS clinic the respiratory therapist (RT) told us which company she was selecting assuring us that the BiPAP machine would be delivered and set up the following week. When Friday of the following week came (May 30) and still no BiPAP had been delivered, I called the company the RT had mentioned and discovered there had been no order placed for my husband. I called the nursing coordinator at the ALS clinic and was told the RT was out of town until Monday, June 2nd, but that she would be asked about it on Monday or possibly it would not be until Wednesday (June 4) at clinic that she would be asked. :evil: I'm not good at comebacks until hanging up or shortly after a conversation so did not express my anger at that time.
First thing Monday June 2nd I called the coordinator and told her how upset I am about the RT's negligence in leaving town for a week without faxing the BiPAP order. The coordinator said she understood and would speak with the RT. Within 1/2 hour we received a call from Harold at the BiPAP company and set up an appointment for delivery for the next morning.
Shortly after making the appointment I remembered we had a PT appointment for the next morning. I called the local branch of the company which was to set up the BiPAP and asked to speak with Harold and was told there was no Harold working there. I checked our caller ID to get the number from which Harold had called, called that number, and was told Harold was away from his desk, but that if I left my name and number, he would call back. Several hours later when he had not called back, I called again and was told he still had not returned to his desk. When I said that all I needed to do was change the delivery appointment time, the girl said "Oh, Harold isn't the person you need to speak with. You need to speak with our Phillipsburg PA office. They're the ones who handle appointments." When I asked her where her office was, she said "We're in Columbus." I asked which Columbus and she said "Columbus OH." She put me through to the Phillipsburg office and the person with whom I spoke said she needed to check some things and would get right back with me. When an hour had gone by and she had not called me back, I called her and she said "We've got to get the paperwork straightened out. We're talking with the clinic in ___." (our ALS clinic) By that time it was late in the day.
June 3rd when I still had not been called back, I called Phillipsburg PA again and was told they were still working on the order and would call back.
June 4th I called Phillipsburg again to ask what was going on because we'd never heard back. The person with whom I spoke said "Let me call your clinic." A few minutes later she called back to say the referral was now in and that she would be calling back by June 5th to set up an appointment for BiPAP delivery.
June 5th the local company called to say they'd like to deliver the BiPAP June 6th. June 6th the BiPAP arrived and was set up. It is a ResMed VPAP III. The mask we selected was a ResMed Mirage Liberty which fits into the nostrils and also covers the mouth. (My husband cannot keep his lips tightly sealed or keep his mouth shut when he sleeps and consequently exhales through his lips.)
The company technician did not bring a humidifier stating that they had run out of them, but that she would order them and bring one by the following week. She also said we had a week to decide if the mask we had selected was satisfactory.
After five days of use, my husband was experiencing discomfort and some bleeding in his nose. He was also waking up with a very dry mouth, so on the sixth day when the technician still had not brought the humidifier, I called her to ask if she could bring us some other masks to try and especially a full-face mask. She said the doctor had requested that my husband not use a full-face mask but that she had not realized that when she first brought the machine because she had not yet seen the order. (She set up the machine without consulting the order?!:evil:) She said she would bring the masks the next day (June 13). I told her that my husband was having his PEG tube installed early in the morning that day, and asked if she could come in the afternoon. She said she would.
By 3:30 that next day when the girl still had not brought the humidifier and other masks, I called to ask if she were coming. She said "My manager has been out all day, but I can do that. Would 4:00 be okay?" (We had arranged the previous day that she would come the next day, and now she was saying "I can do that." !as if she was doing us a favor!:evil:) She arrived at 4:15 with the doctor's order and with a Respironics ComfortCurve mask and a chin strap.
The order indeed reads "Please do not use a full face mask. Pt. would like to try the Swift, ComfortCurve, or Nasal Aire. Please provide chin strap." This is something the RT wrote on her consult sheet-it was not a specific order by the Doctor.
The technician hooked up the Respironics ComfortCurve hose/mask to the ResMed BiPAP machine and turned on the machine. Air flowed and my husband seemed to feel as if it was okay and said he'd try it.
When asked about the humidifier, the girl said she had ordered them but they hadn't come in yet, and then she left.
That evening when my husband got comfortably in bed with the Respironics ComfortCurve in place with chin strap, he lay back and tried to fall asleep. After about 20 minutes he got my attention and said the machine was ramping but not giving a push of air as it had with the uncomfortable ResMed Mirage Liberty mask he had initially used. He said he couldn't breathe with the ComfortCurve mask and had to revert back to the uncomfortable ResMed Mirage Liberty mask.
Of course, it was Friday night and so he used the uncomfortable mask all weekend.
I'll be calling today to get with a different company and find out why the RT said not to use a full-face mask.
Also, the technician who set up the machine never washed her hands on either visit. I find it astonishing that she initially set up the BiPAP without first seeing the order. And additionally, it's totally irresponsible to not keep track of your stock and order items that are getting low before they run out. That's why we still have no humidifier.
I'm really mad! Sorry for such a long post, but I just need to get this off my chest.
Has anyone else had such problems? Is it indeed possible to mix brands of machine and mask? Has anyone else been told not to use a full-face mask? I thought the purpose of full-face masks was for mouth breathers as for PALS who can't keep their mouths shut. Am I missing something?
I hope someone responds to some of these questions.
Thanks,
Jane
 

msde302

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Joined
Jan 5, 2008
Messages
77
Reason
CALS
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US
State
MN
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St. Paul
Jane-
I don't have solutions for you, but I can at least assure you that your Bi-Pap issues are not yours only! :?:

My mom was given a Bi-Pap last summer which she never used. We sent it back. Only to find that about a week later she was panicking and needed it in the morning. It was brought and set up with the RTs recommendations from last June. But we worked with it.

But it's only worked properly about one quarter of the time. We only use it about once or twice each day, but it will usually ramp, like you said, but then ours just blows air. And then BLARES an alarm that won't go off until we unplug it. I finally got so frustrated (lack of sleep, worry, etc.) that I called the company that came to deliver the Bi-Pap (on Saturday). I was told they don't have people in ON THE WEEKENDS! And that the woman who answered the phone doesn't know anything about the machines. She said maybe she could call an RT at home and see if they could call me back, but she couldn't promise anything. EIGHT hours later someone called back. But he said our machine was too new and he didn't know what the "E48" error meant. I asked why, if they are a business that supplies LIFE SAVING MEDICAL EQUIPMENT that they wouldn't have 24 hour emergency consults. He said he didn't know and that I should call on Monday if I was OK with that.

Thankfully, it does work from time to time so I could wait until today. But I couldn't help thinking what would have happened if my mom were someone who needed the machine full-time.

I'd like to think that we caregivers are not just blowing things out of proportion in our little worlds. But I think Jane, your concerns are reasonable!:)
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I can't believe the incompetence out there. Jane, I wonder why they would say not to send the full face mask. If your husband showed any signs of claustraphobia that may be why. My Bipap quit last winter at 1 am. By 2 am arrangements were made for a replacement (proper settings entered because the original has a sticker with my settings on it) to be sent by taxi from 40 miles away in a snowstorm to make things worse. By 5am I was back in business. So there are good things that can be done when people care. You've just ran into a bunch of incompetents. Hope your luck changes.
AL.
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
msde302,
Thanks for responding. I see you have your woes too!
Just as you wondered about no backup at the company you're dealing with, I wondered the same thing with regard to the RT at the ALS clinic being out of town for a week. I find it astonishing that the RT has no back-up and we had to wait for her return to begin initiating the order!
And to think your machine only works 1/2 of the time! Amazing! And the person who called didn't know what the E48 error meant because the machine was too new? You'd had the machine since last summer!
With respiratory status the most critical factor in the equation, it's hard to fathom such incompetence and impossible to accept having to fight for basic service.
I hope your woes can get straightened out. Your mom is so fortunate to have you to fight for her. I shudder to think of PALS who have no real help fighting their battles.

Al,
I don't know why it was specified that we not be given a full face mask. My husband is not claustrophobic and has full use of his arms and hands (the Johns Hopkins ALS site recommends a full face mask for ALS patients especially if they have bulbar dysfunction, unless they do not have full use of their arms and hands).
I called the coordinator at the ALS clinic this morning to state our case and asked that same question. I told her we want to start all over again with a new order and a new company specifically requesting that the "no full face mask" restriction on the order be removed. I also specified that it be an RT who brings the BiPAP and sets it up and not a Rep (I don't know whether the girl who set our BiPAP up was an RT or a Rep)!
So we fight on. How shameful, especially since so few strides have been made in discovering more about this horrible disease and how to cure it. Let's hope the ALS Registry Act can finally be passed so we can get moving on trends, etc.
Thanks so much for responding, Al. I read posts here before contacting the ALS clinic coordinator to find out what equipment others were using for BiPAP and appreciate your input about using the Respironics Synchrony s/t. I went to the Respironics site to read about it and it specifically says that ALS and neuromuscular patients may benefit from the Synchrony line. I specified to the coordinator this morning that we wanted to go with that line.

Thanks to both of you for your input. It's greatly appreciated. I wish you both well.

All the best,
Jane
 

awakinggiant

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Aug 7, 2008
Messages
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LA
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New Iberia
omg

Frankly, I am shocked and feel completely sympathetic to your trials. I am in limbo w/ a diagnosed but have been expieriencing some breathing issues with an onset of symptoms. It makes me scared to face some drama like that while at the same time mad for the incompotence of these people and the med system in general. :( Sorry for your troubles and may the mercy of God meet you in them.:cry:
Kris

PS Off subject but was wondering if rib cramping or diaphragm twitching was initial onset before BIPAP needs or FVC failure?
 

jpruppe

Member
Joined
Apr 23, 2008
Messages
17
Reason
PALS
Diagnosis
04/2008
Country
US
State
VA
City
Harrisonburg
This is fiddle player's PALS. To answer your question regarding "initial onset," the short answer is NO. Onset was occasional voice change to more nasal sound, saliva, some weakness.

Utility Man
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
fiddleplayer & utility man

I am sorry to hear of the woe's with bipap. When you have an illness and then the things that should be simple are not, it is just frustrating! Like anyone needs added confusion and internal incompetency. I am sure you feel frustrated, Jane, as you are a nurse.

good luck and hope it works out soon......
 

cajuntexusa

Active member
Joined
Apr 5, 2008
Messages
46
Reason
PALS
Diagnosis
04/2008
Country
US
State
TN
City
Thompsons Station
bipap issues

When I was tested in June for the BiPap it felt good. When they brought me my own and placed it on, I felt there was something different, not enough air. I called the company and they assured me the settings were correct. This went on for several weeks with being able to wear it only about 3 hours per night. Upon closer inspection there was a valve right before connecting to the mask with a v type opening. The company told me it was a safety check valve. I took it apart and was able to build-up pressure when blowing through it, showing it had restriction. I removed the valve and placed electrical tape to hold the tubing together. I also notified the doctor and brought her the valve. She stated that several others ahd complained about the pressure not being the same. After inspecting the valve she stated that the valve had restricted the air pressure.
 
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