Help - Am I on the correct Forum??

[Dagswe21]

Hello everybody,

Please can someone help me out here: I don't know if I'm on the correct website and forum! Let me elaborate a bit:

Due to scoliosis (curvature of the spine) which I've had since age about 14 (some 25 years ago - help I'm feeling old now!!! ), I have had about 7 episodes in total, of either severe chest infection, or and/or pneumonia.

This is because my scoliosis "sqashes" my lungs (mainly my left one), so my breathing is compromised. I have ended up in hospital about 5 times, recently was the longest admission, for 4 and a half weeks (I only got home on Oct 17th '16).

My official diagnosis now, is that I am a "chronic CO2 retainer". I am looking into this a lot and learning more about it every day, but, on almost every hospital admission, I have been put on either CPAP or, more often, BIPAP for at least a few days, and I am awaiting an assessment for a possible home BIPAP machine (much of this is still new to me). I live just outside of London, UK, by the way.

I saw so much talk of people using CPAP / BIPAP on this forum, but I do not have sleep apnea!

So have I landed on the wrong forum?? If so I apologise, I am very much a 'newbie'!! If this is not the right forum for me, can anyone please recommend, or point me in the direction of, more suitable forums and/or websites?? I haven't had much luck with the usual search engines!!

Thanks in advance for your help, and apologies for "getting in the way" if I'm in the wrong place!!
Marco.

[robysue]

This is because my scoliosis "sqashes" my lungs (mainly my left one), so my breathing is compromised. I have ended up in hospital about 5 times, recently was the longest admission, for 4 and a half weeks (I only got home on Oct 17th '16).

My official diagnosis now, is that I am a "chronic CO2 retainer". I am looking into this a lot and learning more about it every day, but, on almost every hospital admission, I have been put on either CPAP or, more often, BIPAP for at least a few days, and I am awaiting an assessment for a possible home BIPAP machine (much of this is still new to me). I live just outside of London, UK, by the way.

I saw so much talk of people using CPAP / BIPAP on this forum, but I do not have sleep apnea!

So have I landed on the wrong forum??

It is true that almost all of us here are folks using CPAP or BiPAP because we suffer from sleep apnea. But we are also a group that is dedicated to helping people adjust to CPAP/BiPAP therapy.

So we'll be able to help you with whatever CPAP/BiPAP questions you have and we'll be able to help you troubleshoot problems with using the machine.

But we probably won't be able to answer questions related to whether the machine is doing what it is supposed to be doing in terms of addressing your problems with chronic retention of CO2.

Best of luck in working with your doctors to find a way to treat your chronic retention of CO2. And if you do get a BiPAP and stick around, the welcome to the forum!

[Beej]

I have scoliosis, too, however mine was surgically reduced from 52 degrees curvature to 26 degrees curvature, and stabilized with a spinal fusion and Harrington rod.

One thing I'm thinking is that you may find it helpful to work on learning to exhale completely when awake. Many of us don't breathe deeply when awake, and don't even notice because the activity level isn't taxing your lungs.

Here's an experiment: Before you attempt a deep breath in, begin with as complete an exhalation as you can manage. Then breathe in. This is part of the relaxation technique described in Herbert Benson's The Relaxation Response, 2nd ed.

Another thing I'm thinking is that you might find it helpful to learn about postural drainage. This is a method to systematically apply percussion to the lobes of the lungs while in particular positions to help loosen and drain any mucus buildup. Ask your doc if you can get a referral to respiratory therapy to learn how to do this for yourself, or see what searchers can find you info on the web.

[PaulaO2]

Yes, we can help you understand the machine and the mask but not much more than that.

Is the increase in CO2 causing any Central Apnea events or just hypercapnia?

[Dagswe21]

Thank you to all so far for such quick and helpful comments!! Where to begin?!

robysue: thank you for the warm welcome. I think I will definitely need advice / guidance with the actual usage of a BiPAP / CPAP machine at home. In hospital, obviously it was all just set up for me, and all numbers and other facts (pressure, software, humidity etc.) are still a mystery to me. I had no idea how much went in to setting things up correctly! The things I will need to learn will become more clear once I have the assessment for a machine at home (I'm on a waiting list, and I could be anywhere from a week to couple of months).

beej: thanks for your intro. I too had a spinal fusion, but without correction or a rod insertion, due to other complications. It was more a case of stabilisation, and stopping further curvature. I have heard about various breathing exercises etc. which can help, and will be looking into these, along with the book you mention. Also, a referral to a Specialist Respiratory Nurse is in the works already! Thanks.

PaulaO2: As far as I know, the CO2 increase is causing just hypercapnia. But again, being so new to this, I wouldn't be surprised if more diagnoses and issues present themselves, the more I learn!

Thanks everyone again for the warm welcome,

Mark.

[Sleeprider]

Dagswee21, the use of a bilevel machine to improve ventilation is pretty well established, and not a big stretch from the use of the same machine to prevent obstructive apnea. In the case of people needing more ventilation support, this is done with pressure support, the difference between higher inhale pressures (IPAP) and lower exhale pressures (EPAP) that all bipap machines provide. So it is an assist to the spontaneous breathing you already have, no a ventilator. I think you will find the therapy helpful and refreshing. Just like the rest of us, the biggest challenge will be to get comfortable with it by having the right mask, fit, humidity, and even things as simple as a hose cover to make it softer when you sleep. We can help...welcome.

[trish6hundred]

Hi Dagswe21,
WELCOME! to the forum.!
Hang in there for more responses to your post and good luck to you.

[Ockrocket]

Welcome to the group..

Though your reason for using CPAP may not be what is usually on this forum, there will most likely be a wealth of underlying knowledge within the group that may be able to help more than expected.

And even just information on the basics of CPAP/BIPAP use it is worth being on this forum.

[Dagswe21]

Sleeprider, trish6hundred, and ockrocket, (hope I didn't miss anyone out there...)

Hi! And again thanks for the warm welcome.

Yes there is so much to learn, it looks like I will be hanging around (and bugging you guys! ) for a bit after all, even if sleep apnea isn't my main issue.

As I mentioned above, I had no idea it was all so complicated.
The first time I had BiPAP was in hospital. I awoke with severe breathing difficulties at 5am at home. I had been fine the night before, just a bit tired. An ambulance was called, and I lost consciousness before it arrived (under 10 minutes!). The ambulance paramedic ("first responder" in the US? I'm in the UK), I was later told, tried to measure my oxygen saturation when he arrived, and the reading was so low, he was sure the finger-probe machine was broken!!
I came around about 3 hours later in the hospital (I was in the "High Dependency Unit" which is one step down from Intensive Care (nothing to do with drug dependency, as I first thought!)). My parents etc. had arrived by then, and the Doctors had told them earlier to "prepare for the worst".
Looking back, it was terrifying.
Anyway, when I came round, I was on BiPAP for the first time. At first I thought, what the heck is this mask?! This noise?! The strange feeling whenever I breathe?! I was so confused and scared, trying to pull it off. Then the Doc's and family members explained to me I had very aggressive pneumonia, I was on IV 'Tazocin' (a very strong anti-biotic I believe?) and the mask was helping me breathe (it probably saved my life, more likely!). So I calmed down and was reassured, and I slowly got used to it. Also a great help, was that all the nurses at the hospital were AWESOME and super-helpful. Knowing it was my first time, they let me have short breaks, helped me drink a lot as my lips and mouth were dry, and were just all-round patient, helpful, and understanding to me. Now, having been there 4 or 5 times again (but never so bad at the start, nearly not making it to the hospital, thank heavens, and also because I now know the 'signs' to look out for, so I go to the ER or my family doc as soon as I think it is starting), I understand it all a bit more, and I actually liked being on the BiPAP. I had an oxygen tube feeding into the mask too (do you get this at home?) and it was like taking big, deep, nice breaths of fresh mountain air, without trying! I felt so refreshed, and 'oxygenated' (is that a word?!), and my sats was soon back to 95%+. That's how I could best explain it to people anyway.)
One BIG thing I noticed was that, often (4 or 5 times a week) at home I wake up with a headache. Nothing terrible, but like if I had been to a late party the night before, and had a beer too many! This COMPLETELY disappeared when on BiPAP, and the Docs told me this was most likely, the retention of CO2 in my blood was basically poisoning me a bit each night, like breathing in some smoke from a car exhaust or similar.
Sorry for going on so long, but it feels good just to get this off my chest, to people who understand (at least in part)! I have never had the chance to share this (at times, very scary) journey like this before. To end, I will say, I am looking forward to getting BiPAP at home, and again, thank you all for the support and the welcome!

[OpalRose]

Hi Dagswe21,
Welcome to Apnea Board! There is a wealth of knowledge here, so feel free to ask questions.