fiddleplayer51
Distinguished member
- Joined
- Mar 24, 2008
- Messages
- 337
- Reason
- CALS
- Diagnosis
- 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
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