Hey Becca,
We got a Respironics bi-pap machine ten weeks ago. Our machine, which is a new model, had the settings done by the respiratory tech. There is a small integrated heated humidifier that I fill with distilled water. The filter, the tubing, and the humidifier need to be cleaned regularly.
The tube connecting the mask to the machine is long enough so that you can turn over to the other side during the night while sleeping. All we have to do is turn it on and once my PALS starts inhaling, the machine starts its job. We had a few problems understanding the instructions before we were familiar with the device. It is easy to use once you get used to it. It only weighs a few pounds and we took it all over Italy for a month and it worked fine.
It is very quiet and I have no problem sleeping a few feet away. There are some apnea alarms on the machine and they can be turned on or off. This same machine is used for people with snoring problems and related apnea. In fact our tech uses it for snoring. Our insurance pays for ours.
We did have some problems with the mask at first. We were given the nasal pillows but my husband has a large nose and the pillows pushed into his nostrils and was very uncomfortable.
The new mask he has is full face and it comes in different sizes according to your face. Jay finds that easier to sleep with. There are cushions to position the mask on his face and there are straps around the top of his head and the back of his head towards the neck to keep it in place. The part of the mask that covers his nose and mouth has a soft gasket to seal the face mask. This mask is good for someone who is a mouth breather or has a problem keeping his jaw closed while breathing. I have noticed that my husband who was always a nose breather breathes with his mouth more open now so this mask works better for him. He also finds that he gets congested with the bi-pap so he now uses Flonase nasal spray- by prescription- and that is helping with the congestion issue. I have been using Flonase for allergies for over ten years and it works great. Try to find out about congestion problems with the machine when you get it. The mask is most important because if the mask isn't comfortable the person won't use the machine. We are seeing the respiratory tech on Tuesday to investigate other masks for daytime use. It is difficult to read or watch tv with the full face mask if you need glasses. I would ask about that. There are quite a few mask alternatives.
Here is a link for a good article about Pulmonary and ALS:
https://psg-mac43.ucsf.edu/als/Bilevel for Website3.pdf
I did not ask for the results of the breathing test when they first gave my PALS the test. I didn't realize what was coming and when they told us he needed a bi-pap when he got his diagnosed I was in such shock about needing the bi-pap immediately I forgot to ask. Last week when he had another breathing test I asked the tech for the results from this test and the results of the one ten weeks ago. My son had gone and spoken to a doctor at Hopkins ALS center about ALS back in April after we got the diagnosed. The doctor was great and gave my son some great info. He said that ususally when someone's lung capacity is at 60% they have a year to live and once it gets into the low 30% range that they are at the end. My husband was at 60% when we got diagnosed and ten weeks later is at 39% so it is not good for us. Be sure you ask for the lung capacity and the NIF, results, which is explained in the above article. When my husband got the b-pap I asked the tech what happens next with breathing? He told me you start out at night with the bi-pap, then you go to the bi-pap fulltime and after that it is a decision about the ventilator. In fact when we went to the clinic las week they asked me if we had decided about the ventilator yet. Again shock and not ready for these next steps. By the way my husband has bulbar and dementia also. I think a lot of people have a much slower progression regarding the breathing issues.
I keep a journal of the journey and in it I keep a record of what the ALS clinic tells me. I find that when something is explained to me at the clinic that I understand it in the moment but when I try to explain later to my kids what was said to me I really don't understand it. Therefore I bought a little Flip video that holds an hour worth of memory and I am going to see if the ALS nurse on Monday or the ALS clinic will mind if I tape what they tell me. My computer savvy son said YouTube has private videos that are like IM'ng and that I can put the video on and he can then see it and be part of the process with me and it is not available for the world to see.
Good luck Becca. I know this is long and rambling but I hope this info helps. Lee
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