Anyone else hitting 30 cmH2O?

[dllfo]

Something new for me, feels like the machine pumped air into my chest cavity, ribs hurt. I turned it off, brought the smartcard in to download it, only to find it is not working:
An error had occurred while downloading from the SamrtCard.
Error Source: RespironicsSmartCard2. Type0.1
Error Number: 80040213

This is still using 1.8.65 software. Software that has worked for years. I am going to "reformat" the smartcards to see if they will work correctly. If not I will install the new software. Sure am tired, gonna be a long day.

DSM, I have a few hundred days to chose from, so I will send you some of my normal nights. I do have them.
BTW, 30mg of Oxycodone is mitigating the rib pain. I will get back on the SV, sitting on the floor next to the bed. Next I will let my Medic Alert Dog out of her kennel to watch over me. If quit breathing she will alert/wake my wife up. In the daytime, if I close my eyes she puts her 50 pounds on me, with her front paws pushing into my chest and she will lick my face. As I said earlier, if I don't start breathing or talking to her she uses her nose and "butts" me in the face. If that does not work, she gets my wife. Smart young lady. My wife trains Service Dogs for Vietnam Vets, so she trained Tolly for me. Portuguese Water Dog. Obama's dog looks like ours. sorry, got to rambling....must be the Oxy and the fact it is 3:35AM. wish me luck.

[OutaSync]

Dilfo, I thought you were supposed to set the max at 10 above min, so that's what I did. Most of the time that is plenty enough for me, but occasionaly I need more.

DMS, this isn't very recent, but since I already have it on Photobucket and it was easy for me to find, I'll post this example of when more pressure might have been needed.

[OutaSync]

This is a more normal night for me.

[dsm]

Bev

Thanks very much for those charts. They actually help provide a useful contrast to Dave's charts esp the 1st one he supplied. The 1st line I looked at was the tidal volume & when you compare your 2nd chart with Dave's 1st it is obvious to see why Dave's breathing & tidal flow are such a worry during the periods when he hits 30 CMs.

Dave is lucky to have the support he has what with his wife training the dog to check up on him !. What a lucky man. Dave, I am sure you let her know what a treasure she is

Interestingly, in looking at the current range of home ventilators (as an alternate to xPAP), I can see some that might equal or better the job the current Bipap AutoSV does. Some of the Volume Ventilators available offer things like battery backup built in. but the current model ASV seems to be a good choice. The devices below are examples of an alternate approach (can do both pressure & volume ventilation) ...

Respironics (max 30 CMs)
http://trilogy200.respironics.com/clinical/default.aspx Trilogy 200
http://trilogy200.respironics.com/clinical/faq.aspx Trilogy 200 FAQ

Resmed (max 50 CMs)
http://www.resmed.com/au/products/vs_ii ... c=patients
http://www.resmed.com/au/assets/documen ... nz_eng.pdf

Dave, if you get the chance, can you ask your R/T what he thinks of the above 2 machines vs the ASV you use. Mention that these have built-in battery back up. That seems to me to be very important to your good health & longevity. Those periods at 30 CMs really are a worry.

DSM

PS Bev, that 2nd chart of yours sure looks good, did it refelect how you feel ?

[OutaSync]

PS Bev, that 2nd chart of yours sure looks good, did it refelect how you feel ?

Nope, I pretty much feel equally bad every morning. I haven't ever felt as though I got a good night's sleep.

[dsm]

PS Bev, that 2nd chart of yours sure looks good, did it refelect how you feel ?

Nope, I pretty much feel equally bad every morning. I haven't ever felt as though I got a good night's sleep.

Bev
Thinking about your charts and putting to one side (for the moment) any influence of prescription drug side effects,
my semi educated guesses include ...

1) That your SpO2 reading taken around your body (fingers, toes, ears) will actually be ok and within acceptable range

2) But, am wondering if your CO2 blood levels are out of balance.
My semi educated guess here is towards it being on the to low side, so hypocapnia symptoms are what else I would look for.
Below are the known symptoms from hypocapnia (as posted previously) - do any of these have any *obvious* place in your
list of symptoms ?
- cerebral vasoconstriction, leading to cerebral hypoxia and this can cause transient dizziness,
- visual disturbances (i.e. spots before the eyes, light flashes to right or left, etc:,
- anxiety (an obvious symptom - do people generally feel you are an anxious person),
- blood alkalosis leading to lowered plasma calcium ions and nerve and muscle excitability. "With associated pins and needles,
muscle cramps and tetany in the extremities, especially hands and feet". (i.e. muscle twitching, even hypoparathyroidism).

I can't recall if you went down this path of possibilities back when you were 1st having your charts looked at - if so please remind
me of any conclusions from back then (will save me searching thru the thread when time is tight ).

Cheers

DSM

[OutaSync]

Okay, I admit that I picked a good chart, so that I could show off my near perfect leak line. I'm doubling up on mask liners and it seems to be working. Now if I could just figure out haw to get some sleep with all this crap on my face.

DSM,

Yes, we did discuss hypocapnia several years ago, but the conversation was way over my head and I couldn't keep up. I don't want to hijack Dilfo's thread, so could you PM me with suggestions? And keep it simple, I'm working with decreased brain cells.

[dllfo]

Bev, you are welcome here, I don't mind.

DSM, I just got a call from The Sleep Study Center. They want to see me again. That surprises me, as I wasn't an easy patient (?) the first time they sas me. Here is the Interpretation from that night. I am looking for the one from the National Jewish Hospital In Denver, Colorado. They put their top guy on my case that night. Anyway, here is the April 2006 Interpretation of my condition that night -------

Interpretation:
The sleep study is consistent with a diagnosis of severe obstructive and central sleep apnea. The total Apnea-Hypopnea Index was 65.2 events per hour. There were several central apnea/Cheyne-Stokes respirations. There was snoring throughout much of the night. Sleep was very fragmented by respiratory events. The sleep efficiency was 62.7%. The oxyhemoglobin desaturation nadir was 72%. CPAP was started during the middle of the night. CPAP was not well tolerated. There was little sleep time with CPAP. CPAP pressure of 9 cm/H2O was the highest pressure attained. There were several respiratory events at this pressure. There were occasional PVC's. (My first night ever with CPAP)

I was starving for air and this guy kept telling me he could not increase the air because he was following protocols. My heart rate felt like it had doubled, so finally I took three hits from my Nitrolingual, which really slowed my heart down. The man came into the room, asking if I was ok and I told him I was now.
The highest they gave me was 9cmH2O. My EPAP is 8 cmH2O. Long story short, I think my Pulmonologist will send me to the hospital sleep study center.

Can I take my own machine? I will take my own mask. Can they hook up the SV unit to get enough data? Egad this is going to be a miserable night. Whine, snivel, whine..........

[dsm]

Dave,

You have my sympathy - not nice knowing in advance it is likely to be troublesome. But you know it is worth it.

I believe you can take your own machine but it does depend on just what they want to test. I would love to see their
PSG info esp any capnogram along with the matching SpO2 data (blood co2 & blood oxygen).

If they don't try to titrate you with an ASV or a volume ventilator then I would wonder about their competence
(seriously). Take along the 1st chart we have posted here & ask the R/T what might have been the outcome if your
power had failed at the start of that hour & you dog was locked outside the bedroom by accident & your wife was
away on an emergency visit to relatives or for some other reason ! .

The advantage of titrating you with your existing machine is if that is what you plan to use into the future. However
if they are able to provide you with a new ASV or Volume Ventilator, then use that model proposed.

I know I don't have to tell you that your life is very much in your own hands & that you need to wheedle the best out
of your R/T - he doesn't have to have nights like you have.

Good luck

DSM

PS In 2 days I am off to UK & Europe for 4 weeks - won't be back on deck until 13th Sept. I plan to have an iPad with
me & if the opportunity presents itself will log in from whatever country am in at the time. But the last week will be
in Sth Africa & I don't expect to have any access from there.

D

[dllfo]

DSM, I don't know if I told you or not, but my doctor read their report and threw it in the folder, then ordered me my first Respironics BiPAP Auto. Those of us on here really set the numbers, fine tuned them and all was well.

My wife was sent up there. Before she went up there I had bought her a BiPAP Auto. It was a bargain. She was on it for almost 3 months when she finally agreed to the sleep study. She was also about 230 pounds at that time. (She went to weight watchers and lost about 75 pounds and has kept it off for a couple of years, so she is doing quite well now) --- but back then, they titrated her at something like 6cmH2O and I gave our doctor a summary of about 90 days on the BiPAP Auto, with it indicating she should be about 10-11cmH2O. They had already ordered her an entry level CPAP. I gave him the exact name of the unit and the HH. He wrote the prescription for what we wanted and the Sleep Study people were not happy.

A few months later another lady friend went in there and came out demanding a BiPAP Auto. I do not know what her numbers were, but she has had Sarcoidosis for many years. She got the BiPAP Auto, they set it up as a CPAP and she threw a fit. Came to our house, asking me to set it up like mine and my wife's was. I refused at first. Family is one thing, but a friend? I finally showed her husband how to do it and he put the same data in to hers as my wife and I had.

All was well in the world until I went to the National Jewish Hospital for almost 6 weeks. Life seemed to change a lot after that. Not for the better. I had to get off the opiates, so I did. Cold Turkey I quit. I was taking between 500-600mg of Morphine a day (equivalency chart) and I had a couple of episodes where I could not remember how to wake up .... I knew what the RN wanted, I just couldn't remember how to do it. After 100% oxygen & continuous flow I woke up. The other time I could not remember how to swallow the mouth full of soup I had. I detoxed. Within a month I was off opiates. My wife was a saint to put up with me. Think of Sir Winston Churchill and Lady Astor. My wife is a Saint. (Just between you and I you understand).

Have a good trip, will you be getting your emails or text msg while traveling?

[dsm]

Tks Dave & good luck to you too for when you go 'back inside'
One point I'd like to remind you is, go set all three of your machines to the same settings - the ones you have in your profile.

Cheers DSM

[dllfo]

Well, got the water tank set correctly, clean mask, new hose, smart card in the machine .... now lets see if I can get some sleep. Over the last 4 days and 3 nights I have about 6 hours and a few minutes sleep. I am so tired I can't function properly. My Service Dog won't leave my side, that is a sign to me I am not doing too good. When I am feeling well, she will go play with the grandkids or see what the wife is up to, but now she sleeps on my feet so I can't slip off. What a girl.

While I am happy others are not enjoying the fun of 30cmH2O, I am a little disappointed at the lack of feedback. If this sleep study does not reveal something, I see another trip to Denver. In the winter no less. I love Denver and the people there are some of the best around, it gets really cold. TTUL, Dave

[dllfo]

New twist to high pressure. I heard a hurricane close by, my wife was shaking me and suddenly I sat up. The mask was on the floor, the machine was whistling away and my wife was concerned.

I went on to 100% oxygen using the oxygen mask, picked up my normal mask and checked it for torn pieces. It was fine. I pulled the smart card and checked it on the laptop. It seems my pressure had hit 30cmH2O for a minute or two, then it apparently blew the mask off the end of the hose. Or maybe it hurt me and I pulled it off. Or maybe the hose is tired and needs to be replaced. I did all of the above. changed hose and mask the next day, reviewed my findings and still do not know if the pressure blew the mask off, or if I pulled it off or..... ??

The chicken or the egg? Pressure blew it off or I pulled it off. Wish I knew.

My sleep study was canceled until we can get an opening at the hospital.

[Bailejl]

I know this is off topic but you guys with dogs.... how does that work? can you give me a few more details about what they do for you? I have had my CPAP for a short while but I know it is not working out right... It makes me so sick that after about 2 or 3 hours I throw up and if that doesnt happen then I get up in the morning and feel sick all day! I was thinking of other things that might help me then the CPAP because I really dont think i can deal with being sick all the time for much longer

[dllfo]

I have had a Service Dog for about 5 years. My wife trains them. If you want help finding one, PM me and I will have her answer your questions.

As for getting sick? I don't know whether you are on CPAP, BiPAP or what. First thing I would do is start a separate thread here and ask some of the members how they handled sickness. Joining the forum is easy enough, then post your situation. Lots of people here willing to help.

Good luck..... Dave