Hi I am new here, and have a complicated situation. It is my husband who has sleep apnea, and uses a ResMed S9 VPAP ST-A. The complicated part is that he has ALS, and is a partial quad at this point. He had been using the S9auto for a year, until he went to the VA for a recent respiratory check up. He does not have Bulbar symptoms (inability to swallow, or move tongue) which is a very good thing, but in the last 6 weeks noticed that he was using his neck and shoulders to breath. Pulmonary functions showed that he has gone from 75% Forced Vital Capacity in July to 37% FVC this November. That is when they switched him to the ST-A so that it could give him volume not just pressure. The bad part is that the RTs there did not seem to know how to manage his settings, and by that I mean it was set on the default settings, and didn't work well. He is 6'3" and weighs 225 lbs, so I am sure the volumes were too low. Initially they would not show me how to change the settings, but after TALKING with him he realized that it was necessary. I also went to the ResMed site and signed in, did reading and research, so I had an idea about one or two things. I asked him if the alarms were off or on, as we were trying full face masks and he does not have the ability to remove it himself, and I would not be with him in the hospital. He said that they were and tried to show me that it would alarm, but of course it didn't. I showed him that the alarms were all turned off, and he tried turning on first one alarm and then another, but not the one I suggested. Well it didn't alarm, until he did what I told him, so you can imagine that my confidence in his (the head RT) is not great.
The problem is that my husband told me that initially the VPAP was doing OK but then started acting really strange only allowing him half breaths for 4 breaths then forced 4 breaths. It was clicking, in the machine, not in his throat and did this until he called the nurse and had her switch him to his old VPAP. I was having a hard time finding something other than nose pillows. Where the pillows are fine if he wears a chin strap eventually he will require a full face mask as his ability to take a breath decreases.
We finally went home with several different masks to try, but because we were both so exhausted went back to the VPAP Auto. But on the second night I noticed that he was having prolonged periods of apnea, lasting up to 30 secs. at a time. This went on for about 2 minutes so I got up and switched him to the ST-A and after some tweaking got it working quite well. I downloaded SH and discovered that he primarily had central apnea, and an AHI of 38. Then we finally tried the Quattro FX face mask and he tolerated it, sleeping through the night and feeling rested in the morning, so was I for that matter. His AHI went to 0 and all was well, except that he started to get a sore on the bridge of his nose, so we decided to alternate nose pillows with the FFM. I was diligent at indicating which he was using on the machine, then on the 3rd night just when I started to feel like we had it licked the machine started clicking and puffing. I woke up immediately and listened for a bit but it didn't settle down, and it didn't take long before he was awake. I tried a bunch of things, then put him on the nasal pillows as he could at least take a breath on his own when it wouldn't give him one. Finally I turned the machine off, unplugged it, separated it from the H5i, changed the water (which I had done at the beginning of the night) hooked it all back up and put it on him again. It started working properly again. This has continued for the last 4 nights, and I am dead exhausted. He also wears it in the evening while watching TV to give his breathing an assist, and after an hour it starts its click and puff. So that rules out that it is because he is sleeping and having apnea, as he is always awake. The weird stuff usually starts at 5:30 am - 7:00am until I turn it off, back on and have it relearn. I am at my wits end!!
The other complication, as if there aren't enough already is that he is an American veteran living in Canada awaiting his permanent residency, so we are relying on the VA 7 hours away. Any suggestion would be greatly appreciated.
Sorry for the novel.
zoohouse! While I do not have the expertise that you are looking for, I'm sure there are others, who will be along shortly, that will be able to help you out.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.
ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.
INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINIONS ONLY AND NOT NECESSARILY STATEMENTS OF FACT.
Zoohouse, since you created this duplicate thread after I moved your post from the other thread and created one of your own, I deleted that thread for you. In the future, please avoid duplication as this will make getting help (and giving it) easier.
As for the machine, if you still had the noise without the humidifier attached, it sounds as if the machine is indeed faulty. It should be under warranty. Contact the VA and explain the situation and see if there is some way they can simply exchange it vs send it off for "repair".
Apnea Board Moderator
Breathe deeply and count to zen.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
I would also chech the total machine hours to determine if the machine was new when they gave it to you. If you have used it several days it should have less than 100 hours. If it has 1,000s of hours that might explain why it is mal functioning.
WELCOME! to the forum.!
Hang in there for more answers to your questions about your husband's machine.
I know you are at your wits end, but I just encourage both of you to stick with it.
Best of luck to the both of you.
12-08-2013, 02:04 PM
(This post was last modified: 12-08-2013, 02:13 PM by vsheline.)
(12-08-2013, 02:45 AM)zoohouse Wrote: … then on the 3rd night just when I started to feel like we had it licked the machine started clicking and puffing. I woke up immediately and listened for a bit but it didn't settle down, and it didn't take long before he was awake. I tried a bunch of things, then put him on the nasal pillows as he could at least take a breath on his own when it wouldn't give him one. Finally I turned the machine off, unplugged it, separated it from the H5i, changed the water (which I had done at the beginning of the night) hooked it all back up and put it on him again. It started working properly again. This has continued for the last 4 nights, and I am dead exhausted. He also wears it in the evening while watching TV to give his breathing an assist, and after an hour it starts its click and puff. So that rules out that it is because he is sleeping and having apnea, as he is always awake. The weird stuff usually starts at 5:30 am - 7:00am until I turn it off, back on and have it relearn. I am at my wits end!!
I assume you are familiar with the Clinician Manual for the S9 VPAP ST-A. (If not, it is available to Apneaboard members by request.)
The machine is a great one and I think the best one for your husband.
What you are describing does not sound like any sort of alarm. Sounds to me like a malfunction, but ResMed tech support may be able to spot a misconfiguration issue by phone.
Please call ResMed Customer Support and ask to speak with technical support. (They may ask for the device model reference number and serial number from the back of the blower unit.) Describe what the machine is doing.
ResMed does not accept customer returns directly from patients. ResMed will assign an RMA (Return Material Authorization) only to a Durable Medical Equipment (DME) provider (I guess this would be the US VA).
I suppose the VA will need to provide you a loaner machine while your machine is being serviced.
You are doing a great job working through all these challenges.
Good luck and take care,
By the way, what therapy mode is being used? If it is iVAPS mode (as it should be), what are the settings for
Target Patient breathing Rate,
inhalation Trigger sensitivity,
exhalation Cycle sensitivity,
and patient Height?
(All these settings are defined and discussed in the Clinician Manual.)
I suggest using ResScan 4.3 (instructions for free download are given elsewhere on Apneaboard) to monitor the data on the machine's SD card. Unfortunately, most respiratory technicians and doctors may not be familiar with the S9 VPAP ST-A, so it may help if you become a resource for them. (Kinda crazy, but that's life.)
Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
I got the manual today by email, been too busy to read it through. I reset it to the default settings last night, and just changed the Rise time to 400ms as he felt that it was shutting off too quickly. It started acting up an hour after going to bed so I unplugged it and started it again, and did a relearn, which seemed to work. I thought today I should do a relearn while he was up watching TV and awake, and it set the Target Pt Breath at 28. What the heck? So here are the settings now.
Target Va 6.5
Target Pt breathing Rate 14 ( I turned it down)
Ti Max 1.4
Ti Min 0.4
Rise Time 400ms
Inhalation Trigger sens. High
Exhalation Cycle sens. Med
Min PS 4.0
Max PS 18.0
Pt height 76"
I do have Sleepy Head loaded.