How do you know it's time for 24/7 bipap?

[Danijela]

Partner is using bipap at night at
maybe an hour during the day. Breathing always seems laboured, even after 8hr use. It hurts to see him struggle. I think he is only truly comfortable while on it but other stuff, like being with and talking to our son, eating, chatting to people and going out are done without bipap. If anyone is using it 24/7 how/when did you make this decision? When you could not breathe without it at all, or earlier for comfort reasons. D

 

[caldona]

I believe we should use the bipap when we need it nobody can decide that for us I might take mine off for ten minutes then have it put back on company or not.

 

[caldona]

I hope you got a bipap ST model it will prompt you to breathe every twelve seconds medicare will let you change if your doctor oders it also if you have had your old one for thirteen months then it's yours

 

[cervus]

I think it should be used as needed or as directed.

 

[Danijela]

We are in the UK, so we have a very basic type of bipap.

My question was more about need Vs convenience.

 

[Mick n Ang]

Hi Dani
Since Mick has had his peg and the last chest infection he is now using his 24/7, we mentioned that to Physio at Whythenshaw and they have
just brought his appointment forward and weren't unduly concerned although he only comes off it too eat,shower or toileting very short periods off it and very breathless when he isn't on it. So more he needs it than convenience. I worry that the more he uses it the more he/the body relies on it ? Ang

 

[Danijela]

Ang, I was told that one can not become 'addicted' to NIV, it is just that muscles keep deteriorating and it is harder and harder to breathe without NIV. When Laurence had pneumonia he was on it most of the time. He managed to wean himself off but I still do not like seing him breathless. 24/7 is the last stage, and although I know some PALS can be on 24/7 NIV for number a months and even over a year, the thought that there is nothing (apart from tracheostomy - not really offered in the uK) that is the next step is just so scary...

Dani

 

[rachelg]

Is a trache really out of the question in your area Dani?

 

[Mick n Ang]

Hi Dani
I am really scared now as they said its ok ? No-one has mentioned to us that this ould be last stage? and he has tried to do without but he really can't. I even said to him today how are we going to travel to the hospital without him using it ? Worried Ang

 

[rcharlton]

Sorry to hear about this Dani. From what I know about bipaps - Lawrence will only benefit from being on it as much as possible.

Ann posted a thread a while back about how bipap extends life.

Try not to think about it being one of the final stages - think only about its therapeutic benefit.

The more Lawrence is on the bipap now- the longer he will live.

 

[CAHPAH]

Dani
My wife has been on her NIV for 14 months 24/7 and she is still doing well. She made the decision to go 24//7 when here FVC dropped below 20% and she was using mostly her auxiliary muscles in her neck and chest to breath. At first she was on a Bi-pap with a nose pillow instead of a full face. This allowed her to speak and even eat while still using her NIV but she still could not get out unless there was some sort of elecrtic outlet to plug her into. Later we where fortunate enough to get a Triolgy 100 which is sort of a bi-pap on steroids. I can be used in bi-pap mode or hooked up to a trach (which she does not have) It has a 6 hour battery so now we go all over the place, church, the mall, the park for walks. It has been a real blessing. She still uses a nose pillow so talking is not a problem. Eating can be a challenge sometimes but so far she is managing it. Since she has limb onset ALS her swallowing has not been affectec yet.

I believe Serena's choice to use her NIV 24/7 has extended her stay with us. I know it has given her a better quality of life. Based on our experiance I would recommend using NIV anytime there is any struggle to breath. Anything you can do to ease the stress and strain on the diaphram muscle will help.

Hope this helps
Jim

 

[retiredmus2010]

Caldona: What is exactly the bipap ST model. ? My PALS has a Bipap AVAPS from Philips respironics. Does any one else out there in the wonderful forum land have this particular model? He has used it since March of 2011. He uses it for nighttime sleeping and when he takes a nap during the day. Total hour use would probably be 10 to 11 hours out of the 24.

 

[rose]

retiredmus, I have the respironics avap, but it's the older model. I had the new style for a couple of days, but the home healthcare company took it back, and gave me another refurbished older model due to issues with Medicare reimbursing them. I do really like the AVAP technology, for me it is far superior to basic bipap.


Dani,

Yes, I agree with Richard, look at it as a big plus, and a way to have more comfortable quality life. The article he mentioned was very interesting in the extent it was felt that bi-pap extends life. A minimum of 4 hours use a day even made a difference.

Here is the study Ann posted:

http://www.ncbi.nlm.nih.gov/pubmed/10385053

 

[LizT]

pretty sure TR. has been on 24/7 bipap for quite a long time now...
maybe he could help

 

[retiredmus2010]

Thank you for responding. My pals has had a definite, positive experience with BIPAP. He believes he gets a quality rest by using it.