BiPap questions

[MupstateNY]

My BiPap was delivered today. I want to breathe slower than the machine wants me to. Inhaling and exhaling get difficult toward the end.

Can one get a longer hose? The space between my side of the bed and the wall is narrow-ish and this means that with the nightstand and then the BiPap, I would have to scoot down the bed to be able to get out and go pee.

It's Astral. The RT said it works best when plugged into the wall. But we have run out of outlets. So my spouse moved the machine to almost the foot of the bed and plugged it into a heavy duty power strip which is plugged into the 6-way expander on my side of the bed. Most of the outlets in this house are two-prong but mine is three-prong. Is this okay?

I've got bedside lamp, clock, mp3 player recharger, hospital bed, electric heating pad, and now the humidifier and the BiPap. That's a lot!

For daytime I would like to get the mask that has the hose going up my forehead and down the center back of my head. What is that called?

What is the best way to get used to using this device?

 

[lgelb]

An Astral is a great machine. I will PM you on settings.

The prongs on the machine cord have to match the prong holes -- not sure exactly what you mean. BiPAPs can burn up like any other machine. That's a lot on one strip. Does it have a surge protector? You definitely need a good one.

I would unplug everything possible and try to get another strip with a long cord (they definitely have those) that you can plug in elsewhere. So redistribute. Do not try to convert three prong to two, or daisy chain strips or adapters. You might need to charge some things in another room, then bring them where they live.

cpap dot com has the best mask selection. Your description could fit a couple. Look at the full face and hybrid mask categories.

They also have the longer hose -- up to 10 ft.

 

[Cowboybob]

I have ALS. I’ve had a BIPAP for 15 years. Whoever prescribed your machine is the person who can change the settings. Of all the machines I use I value my BIPAP as My most valued machine and thus needs to be plugged in next to my bed. I take ambien every night yo get to sleep. I use my BIPAP when I nap or rest in my be. I use to use a Swift nasal pillow but recently changed to an Air Sense full nose face mas. There are many sites on the internet where you might find a longer hose. The big thing is to learn to RELAX when doing something new or using a new machine.

 

[Jimi]

Look up lankylefty27 on YouTube.. he has really good reviews on masks.. I spent over 3 years on bipap 24/7. I had good luck with the dreamwear nasal pillow mask, using the cushion nose piece not the pillow nose piece. For a full face mask I like the airfit F30. Both can be used with glasses

 

[MupstateNY]

Thanks, everyone. I'm taking a break from the bipap while recovering from the RIG, will try again soon. I did feel better after my first try with it, Thursday night.

 

[affected]

I would encourage you to use the bipap!
What is really common after something like a RIG and your pain is that you breath more shallowly and are more likely to retain CO2 which won't help anything that's going on already.

 

[MupstateNY]

Question: is Resmed Ibreeze okay? I'm thinking of switching to a DME supplier who has RTs on staff locally, but they can't get the Astral.

The DME recommended by my pulm. NP has a long drive to come see me and that makes things difficult.

 

[lgelb]

There are different iBreeze models, but none has volume control (pressure adjusts to maintain a certain volume), which a PALS needs. Nor does it have an internal battery for going out.

Not understanding why you need a close-by DME -- what would they be coming out for, that often?

 

[MupstateNY]

I was finally able to connect with my RT, and she was very helpful. I've been trying to get a 10-foot heated tube since my tube doesn't reach well, given the limited space next to my bed (which we are hoping to resolve in the next few weeks). She explained that my delivered equipment includes a connector and a short tube we can use for lengthening.

What you said about iBreeze also helped me decide to leave things as is, thanks.

 

[SeaGunny]

OK - my PALS BiPAP is cared for by a rep who I have his phone number and we can text back and forth. Right now, he is having a supply problems with getting some stuff, masks being one issue.

I was a (military) Safety "Officer" (that means I was enlisted) meaning I looked out for overloaded outlets and other safety hazards. This is hard to do in an ALS home - pretty much bust a whole lot of rules!

CAUTION: Those air hoses that are ribbed, look stronger than they really are. I have contracted for a caregiver and I am SURE, they got the hose caught between some furniture and yanked on it thinking that would free the hose. Well maybe it did, but it sure ripped them apart! Let other caregivers know that they are to report to you (the CALS) anything that gets or is broken. I explained I did not care how it happened but I cared that it was broken and now was useless.

ACTION: Let the Power Company know you have a patient in-home that has life support equipment that relies on their ability to supply power.

BACKUP: When Plan A goes South, one needs Plan B. Plan A will always find a way to fail at some point. OK, when the power company has outages, how do we operate that stand up recliner? That suction machine? That Cough Machine. That BiPAP Machine! How do we keep the heat or AC running?

While my PALS was still able to move around on her own, she would often don the BiPAP machine - but it was plugged into a wall outlet. So, her movement was highly restricted. I found, (at no small expense) a near car battery size "Solar Generator". I am giving you the name brand and model so you can compare it to others if you shop for something similar.

Mine "backup" is a 4Patriots "Sidekick" ($500). It has two 110 V outlets like your house has, it has USB and a variety of outlets for thinks like charging your cell phones etc. What I found, this item would safely sit in the basket of the BiPAP which was mounted on its own roll-around stand. The BiPAP also has a humidifier. WARNING: Amything that generates "heat" is a drastic drain on any type of battery. This thing weights about 8 lbs. During an extended electrical outage: I used it to power the standup recliner to the sleeping position, I then moved the battery to the Cough Machine so the Pals could use that in Conjunction with the Suction Machine (it powered both at same time) but Suction Machine also has its own battery pack so did not need to draw very much stored current, Then on to the BiPAP which the PALS uses overnight. In previous experimentation, this "Solar Generator" will power BiPAP for around 14 to 16 hours of continuous use.
I use adapters plus inverters in the car to run the BiPAP, Cough Machine and Suction machine at any given time when we are in the car and moving. I may have to stop, but the car while running, will power all of this stuff when needed. The solar panels will chage the battery withing 8 to 10 hours of sunlight. Not going to happen in the Winter. Got a gas powered generator to recharge at a faster rate and alos power other stuff.

To provide light (Walmart had these) I used a USB chargeable "desk Lamp" Bostich Konnect folding lamp. In addition I had battery power camping lanterns. To provide heat, I used a gas power generator and (this gets messy) ran Christmas electrical cables through the room from the gas powered generator which was placed outside the house to power both the electric blanket under and insulated cover, power a coffee pot, a 110 table lamp and two room heaters.

Other less lethal methods: A friend has a GoalZero. (shop for your own brand), GoalZero in this case looks and functions much like luggage when moving around. Price on these can be a bit steep between $1500 to ?????? However, GoalZero offers a installable (by qualified electricians) a 4 circuit switch "plate". These switches take the circuit off line from house electrical input and put them on the input from the GoalZero cart. The GoalZero Cart is expandable for more power - just spend another $1500 or more = more power.
One MUST pick the 4 circuits they want to keep "live" -"Live" as in still providing electrical power. More circuits? Buy addition "switch plates" at around $300 per plate. I have around 20 subpanel circuits or enough circuits requiring 5 plates ($1500 - uninstalled) AND they still won't run the electrical range, heating or Air conditioning. If one has natural gas (which I do not) all one has to do is get around $10,000 rounded up and get a Generac whole house generator. If one has a electrical feeding pump for a feeding tube patient, do not toss out or give away all those gravity feeding supplies.

WATER: While City Water is cheapest, when one doesn't have it, it is hard to flush toilets, run bath water or have enough for cooking, cleaning or drinking. If you are thinking that the water from your water heater is suitable for drinking, think again. It may or may not be. Here in middle Texas, the mineral buildup is terrible! When we drained the tank, the "water" looked like wet sand!

Solution: I have a limited quantity of "canned" water. That is to say I have a number of 7 gallon, 6 gallon containers full of water, This is POTABLE" water or "drinking water". However, after awhile, it is not so "potable". So, I can use this stuff for other things and clean the containers, then refill. For drinking and cooking I have bottled water (40 count bottles to the case or 5 gallons) by cases which I rotate as I use it daily in her nutrition and hydration. For snow days or freezes, I have 5 gallon buckets to collect snow melt - used for flushing toilets.
Alternatives are, one friend has 2 each 300 gallon water tanks which he uses daily ensuring fresh water is put into these tanks as it is taken out, plus has a water filtration system for water consumed (daily). Another person I know has either 1 or 2 1500 gallon water tanks for collecting rain water and this water MUST be filtered to be drinkable. IF you are in an area (as recent news will attest) and there is a chemical spill or burnoff - IMPORT bottled water!. The air impurities and or liquid contaminants will "percolate" to the water table and or other water sources that are local. While some say that ain't gonna happen, read up on California's MTB or is it MTBE which was a gasoline additive to ensure casoline burned cleaner in Winter. This stuff can cause Cancer and within a year or 2 was in the ground water and no way to remove it!

FOOD: My PALS is on Dr; ordered nutrition delivered by feeding tube. One day the provider did not get me supplies until the 11 hour and 59 minutes! I was down to the last "can". Luckily, this stuff does not require refrigeration. I went to the manufacturer and ordered backup. I now rotate all this supplies also.

FOOD for the CALS (me) is pretty simple. I get microwavable civilian "MREs" that do not require refrigeration though I keep some frozen "TV" dinners or skillet dishes on hand as well as canned soups, hash. meats and treats, Chili etc.

If you can foresee a problem, work now to find away around it. Think Camping! I have a single burner propane stove that I can use if the power is out and I can not run the microwave.

 

[lgelb]

Gunny, if your PALS needs something like a mask, hose, or other part, and the DME is out, you can negotiate to buy it on cpap.com or elsewhere and get reimbursed. All BiPAP supplies and accessories that I can think of are available on line.

For BiPAP, most PALS have access to an Astral or Trilogy that has internal rechargeable batteries. And you can get extra to keep charged in case of weather.

Just a reminder always to use distilled water in machine humidifiers.

Thank you for reminding everyone to sign up with their power company for the powered medical equipment list.

 

[SeaGunny]

Good point about the distilled water. Thanks for the supply information.

I started with the distilled water but others need to know this.

My PALS has a Trilogy. It does have an internal battery and maybe I can get some training on how to change it out with a fresh one. It does, however, go into alarm once it is on its own battery.

My next point, I found out from the Respiratory Equipment Tech today is that one of my support caregivers reset the Trilogy. Why? I have no clue. SO everyone understands, the tech sets the settings to the doctor prescribed settings. All info from the Trilogy that we have is sent to the Techs office offsite (away from our home) for monitoring. There is ONLY one other person who I can even think of who might know how to do that that was at my house before the tech showed up.

Outlet mounted what evers. I have a Trilogy that uses a transmitter. The transmitter is about the size of a pack of cigarettes. It plugs into an outlet and its purpose is to transmit the information collected from the Trilogy. The maid likes to pull this out of the outlet and fails to plug it back in.

Second device is the power transformer that recharges the battery that operates the house security system when power fails. A support caregiver knocked that one to the point where a wire to the outlet (from inside the wall) pulled loose.

 

[lgelb]

Not to be argumentative, Gunny, but the settings can and should be adjusted by the P/CALS to initial comfort and to adapt to progression, which is something I help CALS to do. It is also helpful to switch settings on the fly for coughing, choking, etc. e.g., remove the backup rate and switch from volume to fixed pressure settings.

The variables that are transmitted via the data connection are not as important as what's "on the ground." A CALS can hear/see the breathing, get feedback from the PALS about what's not working, and see what is happening on the data screen at the same time.

Some machines are set with two sets of settings, like one for day and one for night -- that would be the easiest way to accidentally change settings that I can think of -- possible that someone accidentally switched between prescriptions.

The best way for accidental changes not to be a worry is to know how to operate the machine, including settings.

 

[SeaGunny]

I was up to 4 AM this morning because the hired help could not figure out why the mask on the BiPAP was not working. After several tries, I noted that the headstrap (one of them) was or had lost adhesion Then I noticed the membrane that fits under the PALS nose was not matching up and was one major reason for the alarm. I was unable to get that aligned and done. Position of PALS head?

So, again not to be argumentative, but no one has trained me! Kinda like the Kanagroo Pump. People don;t realize these things don't work without power. I have to either agree or accept everything you are telling me because I have limited training and exposure in this area.
I agree about your "on the ground" comment. The Data Screen shows me one number I have been trained to watch. It must be under a certain number (the alarm trigger number). When patient is resting and with a properly fitted mask, this number has a tendency to drop lower.

Settings, Changing. In my case, I do not think the person who reset the settings knew what they were doing as the settings were "way off" from waht I am told. From what I see, there are two settings but I have not been shown how or why or when to change that setting. So when is class?

 

[lgelb]

I'll PM you, Gunny, to see if/how I can help.

Best,
Laurie