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+--- Thread: Newbe , ASV and min EPAP. (/Thread-Newbe-ASV-and-min-EPAP)
Newbe , ASV and min EPAP. - HermannTheGerman - 02-03-2016
Hello Forum,
I am Hermann and I am new to this Forum.
English is not my mother language, so please apologise if I say something wrong.
Actualy I am not new to sleep apnea.
I got my first ASV machine in 2005.
I suddenly had high BP and after some overnight home scans I went to a sleep study at an near Hospital.
The plan was to monitor the first night without any mashine and the second night to adjust the CPAP.
During the first Night I had an AHI of 56
All obstructive apnoes with a maximum legth of 47 seconds.
In the second night they startet with a straight CPAP.
At higher pressure I had a lot of central apnoes so the put me on a BIPAP.
With the BIPAP I startet to breath in a patern similar to cheynes stokes breathing.
So I had to stay for a third night and they put me on an ASV.
I got an Resmed CS2 which I could take home instantly from the hospital.
Things are a bit different here. Most Germans are on a health insurance and everything is payed for.
At home i used the mask every night for average 7.5 hours and my BP went down to normal again.
Also I felt much better waking up in the morning.
I had a second sleep study 6 month later and everything was looking fine.
I used the ASV for nearly 9 years without any problem.
I felt good. Every 12 month I got a smal black box from a local doctor to check if I still had any apnoes at night.
I did not write down any data from the machine and there was also no software available in 2005, but I can rebember that the AHI was between 2 and 7.
All was well.
Until 2 years ago.
I live alone in an apartment and my mom found me after I didn´t answered the phone for 2 days.
She found me laying in Bed, with the mask on, but I didn´t respond to anything she did.
They brought me into hospital and found out that I had an infection with legionellosis.
Both sides of my lung wheren´t working propperly and they put me into an artificult coma.
During the coma they had to lay me on my stomach, because laying on the back I didn´t got enough oxigene.
I woke up after nearly 4 weeks, had lost about 29 kg of weight. Most of it muscles. I never had to much fat.
Weighting 95 kg (209 lbs) and 193 cm (6,4 feet) height before that event and 66 kg (146) lbs after.
I felt so weak, I couldn´t go up the stairs to the second floor without a break.
I was very lucky that I have survived that sickness.
I started with some fitness, made some long walks with the dog, startet riding bicycle again and got back my old form again.
And the best of all, I quit smoking.
I have an App on my mobile that tells me that I am now 1 year, 9 month, 17 days, 12 hours an 6 minutes without any cigarette.
I put in the date when I was brought to the hospital.
So everything was fine.
No, it wasn´t. My muscles came back and the weight, but I still felt very tired.
My head felt dizzy and I only recognized anything around me like looking through a curtain.
I checked anything with my doctor, but he didn´t find anything.
During coma they had cut a hole into my throat and I was breating with one of their machines.
After they woke me up I was still on oxygene but my oxygene level dropped to very low values.
So they sent my mom to my apartment to get my Resmed.
They wanted to disinfect it, because they where afraid that there would be some bacteria left into the machine.
To make the storie short, they destroyed it.
So I got a brandnew Resmed S9 CS autoset.
It is the european version of the VPAP adapt.
It is capable of straight CPAP, ASV and ASV auto.
My old Resmed CS2 could ASV Mode only, no ASV Auto.
My medical supplier adjusted the S9 to my old pressure and I got a new nasalmask. My old type in not in produktion anymore.
When I felt that still something was wrong with me, I startet to search the internet and startet to check my data with sleepy head.
I had lots of leakages.
I was always on nose masks and now I tried different nose masks to get rid of those leakages.
Swiched to nose pillows. Very comfortable but still had leakages.
So I went to a sleep study again and they found out that my mouth is leaking.
FF Masks are uncomfortable. I had one in the beginning, 10 years ago, so I tried with a mouth strap but wasn´t sucessfull.
Now I have a Mirrage Liberty and I am very happy with it.
Doctor put me on auto ASV with
min EPAP 7
max EPAP 9
PS 2.0 -15.0
min IPAP 8.0
max IPAP 24.0
I have an AHI of 0.0 every night now and no significent leakage.
I do feel better now, BP is ok and I am happy that I fond the main problem.
There is one thing that I still worry about.
Sweating.
when I have min EPAP of 7, like the doctor want me, I start sweating very strong every night.
I have to change clothes and pillow 2 or 3 times a night.
When I adjust the min. EEP to 6 or below, I don´t sweat.
I still have AHI 0.0, and I feel good in the morning, but I get more flow limits and a little more snore.
Is that acceptable or should I stay with the doctors numbers?
Greatings
Hermann
RE: Newbe , ASV and min EPAP. - justMongo - 02-03-2016
Guten Tag Herman.
Your English is very good.
Your question is best answered by someone with knowledge of ASV machines.
We have several members who are knowledgeable with the ASV.
RE: Newbe , ASV and min EPAP. - trish6hundred - 02-03-2016
Hi HermannTheGerman,
WELCOME! to the forum.!
It’s great to hear that after all you have been through, you are doing well and CONGRATULATIONS! on quitting smoking.
Hang in there for assistance with your ASV machine and much success to you as you continue your CPAP therapy.
RE: Newbe , ASV and min EPAP. - OpalRose - 02-03-2016
Thanks for sharing your story with us. Sounds like you are doing well now.
I can't help with ASV settings, but someone will come along to advise.
Just want to say
RE: Newbe , ASV and min EPAP. - ezdrifler - 02-04-2016
Hi Hermann,
Welcome,
I am new and your story concerns me so I wanted to ask you more so that we do everything possible to prevent infections.
1) How often did you washed your equipment?
2) Did anyone ever connected your infection with the machine or they just destroyed it without knowing?
3) Did you get your infection by another source not related to your apnea treatment?
Any information you can share for my own training would help, thank you.
RE: Newbe , ASV and min EPAP. - DariaVader - 02-04-2016
Welcome, Hermann the German! Your English is great and your story was interesting. I also am not one of the ASV users, but I would still be bold enough to say that the change you have made is fine and a slightly higher flow limitation is a good trade off for more restful sleep. an AHI of 0 is great.
RE: Newbe , ASV and min EPAP. - DeepBreathing - 02-04-2016
Hi HermannTheGerman, welcome to Apnea Board.
That's quite a story - I have never heard of anybody getting legionella from their CPAP, but when you think about it the warm moist conditions of the humidifier are probably conducive to its growth. It's extremely important to regularly clean the humidifier, hose and mask to prevent the potential for infection.
Your minimum EPAP and PS are very low, and I wonder if they stay that low for much of the night? Do your ResScan or SleepyHead plots indicate that the pressures stay low? The fact that your AHI is regularly zero and you're sleeping well indicates that the settings are correct. However the fact you get the sweats seems very strange. I can't imagine that 1 cm difference in minimum pressure would have that much effect on your body. Are there any other factors at play, such as a new medication? Or is there something more basic like changing your airconditioning settings or new blankets on the bed?
RE: Newbe , ASV and min EPAP. - HermannTheGerman - 02-04-2016
Thank you all, for the nice replies.
I don´t think that I got the legionella from the CPAP.
I clean the humifier every day and let it dry out during the day.
The hose is cleaned weekly and I hang it to the wall to dry out every day.
The mask will be cleaned when it is wet in the morning, or at least every third day.
I have been on a business trip before that and I believe that the legionella have been in the water of the hotel where I stayed.
If I inhaled the bacteria during shower in the morning or with the water I put in the humifier can´t be verified.
The old CPAP was destroyed by mistake. They tried to disinfect the CPAP in the hospital and did something wrong with it.
Greatings
Hermann
RE: Newbe , ASV and min EPAP. - HermannTheGerman - 02-04-2016
The EPAP pressure is staying that low during the night, exept when I lay on my back. Then the pressure is rising up to 8.0
average EPAP is 6.32
95% EPAP is 7.76
Greatings
Hermann
RE: Newbe , ASV and min EPAP. - justMongo - 02-04-2016
Hallo Hermann,
Your results look very good.
I am sorry that you got very sick.
I have friends in Uelzen.
Gruss aus California, USA.
der Mongo