Proper Ventilator/Bipap

[SATRUGHNA MANI LAMICHHANE]

Hi All,
I am still in New Delhi for my follow up treatment, going back to Kathmandu on 16th April. Visited Neurologist Dr PN Renjen, money minded fellow in Indraprastha Appolo and Dr Achal Srivastava(who diagnosed my ALS) in AIIMS.
They advised me continue with Rilutor but discontinued edavorone injection(had 70 injection with no benefit, advised by Appolo's Doctor). They advised me to have nebulizer foracort Repsules. Appolo wanted me to make a hole immediately on my throat for respiration, my families refused it.
I have been using NIV, Lowenstein Prisma 25s, managing well with it till date. As my respiration is going bad everyday, I need a proper Ventilator or good Bipap standby.

PLEASE ADVISE me a good Bipap or Proper Ventilator with your experience so will tell my kids in UK to get it for me. I need to pay for it, as I am in Nepal(no NHS or anyone provide me). PLEASE kindly let me know if any of you have any spare one with reasonable priced or free or happy to buy new one as well, if machine quality is really really good.

Wish you all the best, please take care.
Thank you!

-Satrughna Mani Lamichhane, Kathmandu, Nepal/Birmingham, UK(seems I can't fly back to UK now, am very weak) Now in New Delhi till 16th April

[Ellie]

I have been using NIV, Lowenstein Prisma 25s, managing well with it till date. As my respiration is going bad everyday, I need a proper Ventilator or good Bipap standby.

In what way is that machine not good enough and/or what are you hoping a different machine will do that your current machine cannot?

PLEASE ADVISE me a good Bipap or Proper Ventilator with your experience so will tell my kids in UK to get it for me.

It isn't really possible to recommend a particular machine for you because none of us know your respiratory needs, but what I can say is that commonly provided BiPAP machines include Nippy 4 from Breas, and the A40 Pro and AVAPS, both from Philis Respironics.

It may prove difficult to buy them in the UK as they are medical devices, but maybe they can be found on some online marketplaces, or perhaps you'll get lucky and somebody has one for which they no use. However, I don't know if a different machine will give you what you want. xx

[SATRUGHNA MANI LAMICHHANE]

Thank you Ellie. I just want to keep a spare ventilator as I am already dependent on it, I use it around 18-20 hours a day. If anything goes wrong with this one I will struggle to breathe. It's a machine can go wrong anytime. Nepal has very small market for Ventilator and there is no production in Nepal, may not have in stock in market when I need it.
I have my consultant in Kathmandu for it, going to review my Bipap settings etc next week.
Thank you Ellie!