Question about respirators and care at home (please help if familiar)

[zemble]

In the US, medicare pays for 80% of the cost of renting the ventilator and associated equipment per month.

 

[Pearl]

How much would you estimate the other 20% to be?

 

[zemble]

To find that out, if I were you, I'd contact a durable medical company, such as Apria Healthcare, and ask them what their rates are. PALS at home usually have two vents, one or two suctions machines and a nebulizer. (Depending on the patient). But my guess in answering your question is that the 20% estimate would be around 2,500 to 3K a month. but so much depends on the individual case and what the doctor orders. Sorry I can't be more help on this..

 

[aman_pec]

vent at home - very doable

Hi,

My father has ALS for last 5 years now and he has been on vent/trach for last 3 years. He stays with us at home and from my personal experience I can tell for sure that its difficult to have someone with a vent 24X7 but it is completely doable. For my father, its my mother and myself who provide care and additionally we have employed a caregiver (6 hours a day) whom we trained a little bit on vent and suction. Even in our case doctors had said that taking care of a patient on vent is not possible at home but if we think about it now, its been already 3 years. Its certainly not too difficult to manage a vent and trach tube. In our case, I change the trach tube every week with a new one and vent circuitry once a month and things have been going smooth.

 

[LONGSAM2]

Vent/Respirator

HI Everyone,.....just reading posts about ventilator. Can you pleas tell me the difference between a Ventilator and Respirator? Is a ventilator always used with a trach tube? Isn't a respirator an artificial means of breathing and when would that be used? Thanks for any input. haron

 

[Al]

Hi there. An actual respirator is a mask for filtering dust mists and fumes from the air. There may be older things that some called a respirator but that is the modern definition. A ventilator is used to force air or oxygen into the lungs either through a trach or a face mask.
AL

 

[hboyajian]

My dad was on temporary ventilation, which was achieved with tubes down the trachea (intubation). This was done because he had a breathing emergency with elevated levels of carbon dioxide in his blood causing him to lose consciousness, and the bi-pap machine he was put on initially was not stabilizing his breathing. On the ventilator, he mechanically exhaled co2 and inhaled oxygen. Essentially, air is forced in and out of the lungs without the muscles having to operate. He regained consciousness when the carbon dioxide levels in his blood went down to more normal levels. He was then able to make his own decision about whether to have the tracheostomy with a long term ventilator or to have the mechanical ventilation removed entirely and be allowed to die naturally. The intubation is painful, so cannot be maintained for long even with pain medication. It did allow my whole family to get there to be with my dad in his last hours and to communicate with him one last time. It meant a huge amount to me to be able to do that.

 

[caroliney]

What type of vent is your husband on? Does he have a cuff, etc? We are looking into a vent in the very near future, need more information on what type works best.

Caroliney

 

[caroliney]

Vent/trachea

What type of vent is your husband on? We need to obtain more information on this subject in the very near future. My husband is getting close to that, unfortunately. Slurred speech, has been my husbands problem for 20 months now, but the breathing is becoming secondary now to looking into. Have an appointment with an ENT for a consult. If you have any suggestions on what you have used, please let us know. He had a PEG procedure 3 weeks ago, which has went very well. The vent seems much more serious to us but would appreciate some feedback.
Thanks.
Caroliney

 

[quadbliss]

Hi Caroliney,

Most people are going with the LTV-950 ventilator. t is a little bigger than a laptop computer, and hangs on the back of a wheelchair without the need for a vent tray.

Mike

 

[caroliney]

Ltv-1000 Ventilator

THANKS MIKE,
Have you heard about the LTV-1000 ventilator which is new? It seems small too. Time is running for us to obtain something. Hoping we may be able to use this 1000. Appreciate your reply on this.
Just now getting back on the forum and reading a few replys. We have so many questions and so little time to do research on this challenge of ALS.
It is just so overwhelming to say the least, however, this forum has so many uplifting personalities which is very helpful in this time of our lives.

Caroliney

 

[quadbliss]

Hi Caroliney,

I am not familiar with the 1000, but I would imagine it is similar to the 950 with some added features. If you will be paying for the equipment yourself, I would make sure you need the extra features before paying for them.

Mike

 

[stacey76]

at home programs

California is not the only state that pays for a care giver at home as my fiance has als and I have been paid through a program to stay at home with him and care for him but they allow only so many hours a day depending on the needs and I live in South Dakota.

 

[caroliney]

Noninvasive Volume Ventilation

Hi Everyone,

As a CALS, would like to share some good news. There are three options for breathing support- noninvasive pressure ventilation, noninvasive volume ventilation and invasive (tracheostomy) volume ventilation.

For nine months my husband has been on noninvasive pressure ventilation with a mask, referred to as a BiPap device, which stands for bilevel positive airway pressure.

Breathing had become much worse for my husband, so the next step could have been invasive volume ventilation - delivered through a tracheostomy (trach) tube, which is surgically inserted through a hole in the trachea (windpipe).

But for us it was noninvasive volume ventilation, delivered through a mouthpiece or mask. My husband is now on a Pulmonetic LTV 950 ventilator, delivering noninvasive volume ventilation through the mouthpiece. Although, he has only been on this device one week, we feel for us this is a remarkable choice and wanted to share this with others that may be facing concerns in this area.

Finding the right mask that works well and a helpful respiratory therapist is essiential. You do need a zero-leak oral masks or modify one that is comfortable for you.

Care of noninvasive ventilation equipment is easier than for invasive equipment. There is no trach or cannula cleaning, nor is suctioning needed.

We can always switch to a trach, should conditions change, but for now we are trying this new venture.

To those that are proceeding to tracheostomy supported breathing, anyone can help their loved one in my opinion and the decision to care for their loved one should be their decision.

Love and God Bless,
Caroliney

 

[Hansell227]

How much would you estimate the other 20% to be?

Hello my name is Bobbie,my husband was diagnosed with ALS in 2005.He is completely paralysised now and is on a vent.I live in Woodstock Georgia.This is what you need to do.Call and join CSSP program @404-463-3244.You will automatically get medicaid with this program and that picks up the 20%.I use High Tech ventilator company.They issue a resp.therapist that helps you set up and will train you at hospital to bring our spouse home.Hi Tech number is 770-449-6785 is covered 100%.My husband is on what they call the work horse LP6 Nellcor.This is also covered.Ebay will become your best friend for supplies.I even bought a extra ventilator for $400. and paid another 400. to Universal Hospital service 770-642-9216 Cary or MiKe Macon.Sign up asap with MDA-Vickie Cunneen 770-621-9800.They will help you with some of expenses with wheel chair etc.To be honest ALS foundation has not helped in 5 years.I buy catheraters from ebay by case.I use Kendall-my husband has a latex allergy.I use Amedisys 1-866-918-2707 toll free number, they are a great agency and are not afraid on vent or trach.They come in my home and change the trach along with Hi tech.Which saves ambulance costs and hospital cost about 5000. If you use Ameddisys they provide most supplies except gloves and you can buy thoughs by the cases on ebay.Hi tech will supply vent ,most trach supplies,and support 24-7.Love this company.I found a podiatrist to come into my home for foot care Butler Creek podiatry in Acworth Georgia.I even found a dentist that comes here.I have a lovely doctor who comes to my home Dr.Katherine Neely.I do know there are some traveling doctors.You can look these up on on internet. Register with your Local fire dept.and ask about the File of Life (S.A.L.T) Program .In case you have a fire,need to call 911 or flooding etc.They know to dispatch to your address or call to check on you.The fire Marshal even came out to help us come up with an escape plan.My suggestion on that front is to go on ebay and buy a old army medis stretcher and place under mattress.My brother was in special forces and be told me about an germany sling stretcher and it has handles.We used it to take my husband to the beach.
Place the vent between his legs and we had a zero gravity lawn chair and took him out there for a short time.It had a canopy so he did not get to hot.I designed a double chaise which is the angle of his hospital bed and take him outside.This weekend we are designing a double hospital bed so we can sleep together.It has been five years.If anyone from Georgia or anyone else please contact me @[email protected] if you need help.I even have come up with ideas for setting up for easy care.I used cheap plastic shoe holders and put one on each side of the bathroom door for supplies I use every day.