Discontinue bipap?

[Jellycat]

Hi there gang.
I'm looking for some help, advice and opinions around bipap.

My pals is immobilised except for some head motion with which she can sometimes indicate a yes or no in response to a question. She wishes to die at home and wants no more hospitalisations. I want what she wants and want her life to be as comfortable as possible. We have good hospice support and gp has prescribed her final stage comfort medications so that they are at hand should we move into that stage during a weekend or other out of hours times.

But we are not there yet. She is using a bipap but the current settings don't seem to be doing much for her. She indicates she is not feeling very comfortable with it and I notice the machine spends more time around epap than ipap. I suspect she may be having more trouble drawing air in as her muscles weaken. On the upside, she is not yet getting the CO2 headaches she had before bipap. The problem? Any change of settings requires a waiting list and at least an overnight hospitalisation. Hospitalisation is a no go. I intend to call the respiratory team in the hospital to see if they can make any suggestions, but in the meantime would appreciate your thoughts. Should also mention change in settings runs risk of her not using bipap due to ftd. Best to leave it as it is? Also, have any of you experience of discontinuing bipap? Anything to share with me about that option?

Thanks for reading this far. All thoughts welcome.
Avril

Have any of you experience or thoughts about stopping bipap

 

[Al]

You should be able to get a Resp. Tech. to come out and adjust the IPAP higher. If she stops using it, the end will come faster. She will be struggling to breathe and you'll need Hospice.

AL .

 

[Jellycat]

Thanks Al. We're not wanting to rush to the end but seems like she's more comfortable with bipap off than on just now. Don't think they'll come out to us but I'd be happy to be wrong. Will keep you posted.

 

[LizT]

I dont know what to tell you, Avril. just know that Im thinking of you and your Mum and as always... love to both of you.

 

[Katie C]

Re the ftd.. if you change the settings.. just don't tell her.

 

[Danijela]

Avril,

sorry you are in this in-between space. I know of some PALS who did not go to hospitals (here in the UK) for sleep studies, but instead had them done at home, and were fitted with bipap at home. The argument, if I recall it correctly, was that the hospital could not provide an adequate level of support due to their very high needs (complete paralysis, no speech etc.). So perhaps something to explore and try to push for someone to adjust settings at home.

They would probably need to change settings, let your mum use bipap for some hours, then check her CO2 and O2 levels.

Thinking of you, Dani

 

[Sequoia]

So sorry to hear this Avril, I don't know much about this as I am not there, but I will keep you and mum in my prayers that a solution is found that makes her most comfortable. Peace.

 

[tomby]

Avail, so sorry, this seems more difficult than it should be. I'm on bipap for sleeping and adjustments aren't that complicated, you would think somebody could come out. It seems like it should be part of hospice care to help make her comfortable.

 

[Jellycat]

Thanks for all of your replies. Much appreciated. I rang the respiratory nursing team at our local hospital. They were helpful and sympathetic. Agreed we needed to review the settings. Their system is hospitalisation for monitoring. They don't do home visits but respironics who supply the bipap machine have one nurse in the country who will set up the overnight tests at home. The hospital have agreed to accept her results by email. Looks like we will then have to go to hospital with bipap to pick up the script which can only be written by the doctor. Don't know yet if that means we're expected to wait for drs appointment before settings are changed. I'll tackle that once respironics have been- hopefully this week.

As to why hospice aren't doing it tomby. Here they can only prescribe if you are an in-patient. Visits to the house are done by nurses only. They work with the patients gp for prescriptions and then administer if injections or syringe drivers etc are needed. They are focused on symptom control & patient comfort. No personal assistance or so on involved.

Thanks for your help. I knew I could count on the forum.

 

[rms000]

Dear Avril,
You and your mom are in my prayers.

 

[momofsixkids60]

Avril, So sorry U *& Mum R expreiemcing this. My thouhgts, prauers & love R with U botgh.

 

[tmasters]

Avril,

Good that you are still pushing this, and looks like you may be finally getting somewhere with them. I hope your mum gets some relief soon. It's no fun to struggle with breathing.

-Tom

 

[Gma'sMeMe]

Hi Avril, I just wanted to say hello and let you know that, in you, I see myself with my mom in the future (no breathing issues yet....) Although I don't have any advice to offer you, I want you to know that through your postings, you are helping ME in this journey forward. Such a "support cycle" here on these boards, wouldn't you say? You sound like such a caring daughter....I will try to be the same for my mom. Love, Mary

 

[Jellycat]

Well, just to close the loop on this one. Mum had the tests done at home. A week later the respiratory team called with the results. The tests showed that at several times during the night her oxygen levels plumetted, pulling her out of sleep struggling to get air. The remedy they suggested was having oxygen added to the bipap machine at a hospital visit the following week. As events had already intervened and the dying process begun we decided that comfort was our first priority, not hospital appointments.

 

[LizT]

im sorry Avril. so very sorry. I love you.