Hi all, well I had a shock to the system yesterday, like a smack in the face really! I'm told I can get type 2 respiratory failure again because I retain Co2, which is how all my COPD problems started.
Does anyone else have Co2 retention and if so what do you do to try and expel the air? I'm trying everything I possibility know but would like to hear from anyone who may have had it longer and is able to deal with it to a safe degree?
I know if I have to go on oxygen I will have to be carefully monitored. However, I don't want to go down that root yet and want to try everything in my power to:
1. Not take any more medication - I rattle enough as it is!
2. I want to try and stay as healthy as possible for as long as possible.
3. I want to continue to exercise, I walk the length and back of the seafront on a daily basis with lots of stops on the way, unless the weather is really bad.
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11 Replies
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Hi eyes_right, I too suffer with co2 retention causing headaches , the shakes and fatigue, although my heart rate is constantly up to compensate my naff lungs my doc didn't seem to concerned and told me to wait for my oxygen assessment 27th November, but suggested I might need ambulatory oxygen for sleeping and going out , not 24/7 , so other than resting as breathing in faster when out of puff doesn't help, other than that I have no idea to be fair, but hopefully somebody else can and I can benefit off ur question too. Take care x Sonia x
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Hi Sonia, I thought I had responded to you, so my apologies. I did say I will be seeing my Consultant and Specialist Respiratory team next month, one at the beginning and one at the end. I've got a bunch of questions and once I have some answers will let you know, it case they will help you too. xx
I also suffer with Co2 retention and I am now on a BiPAP machine 3 hours in the afternoon and all night which has helped the situation , I like you avoided going onto oxygen but I wish I hadn't as I am sure my condition wouldn't be as bad as it is now.
I loathe BiPAP machines, but do have to use them. As for oxygen, how are you monitored, they did tell me yesterday it's a fine balance to get things right, however, until I'm there I won't know for sure. Thank you for responding, I really appreciate it.
With the Bipap I use 2 ltr and without 1.5 ltr and that sees to work fine at the moment, I am on oxygen 24/7. The only problem I have is with the mask on the bridge of my nose which has been rubbed sore and I have tried so many provided masks. I am now waiting for the arrival of a new light weight one I have just ordered not cheap but hopefully this will overcome that problem.
Cont'd.. I was prescribed oxygen 1/2 litre for 15 hours daily. I was found to be a co2 retentive. I had to wear the BI PAP mask for a couple of nights while in the hospital. Grateful that I don't have to use one permanently I do a lot of breath exhales as apparently that gets rid of the CO2. I wasn't aware that Co 2 retainers could not have oxygen therapy? I am a bit worried now.
Hi Malinka, sorry I'm late in responding, but have been in hospital. I wasn't suggesting you couldn't have oxygen with CO2 retention, I've been told (for me personally) I would have to be monitored carefully. I had type 2 respiratory failure, so mine is a little different apparently!
Sorry this is a bit late to reply, but have only just spotted this thread.
Don’t worry Malinka! It is not true to say you can’t have oxygen if you are a CO2 retainer. You can - I do, and I know there are several others on here. I’ve been on oxygen therapy for nearly 7 years now and I feel fine. I’ve also been using a BiPap for CO2 retention for the last 6 years and I credit it with what felt like a miraculous improvement in my condition from the start. It’s not very nice sleeping with the mask, but you get used to it and the alternative for me is unthinkable. I know how weak I was beginning to feel before the bipap treatment started. I’ve improved so much I now don’t need oxygen with the bipap, and can often come off it during the day too.
Incidentally, I’ve never been aware of any fuss about getting the balance between oxygen levels and co2 levels right. Perhaps Southampton respiratory department are good at not worrying me – they check my co2 levels and maybe adjust the bipap settings, but also take into account how I’m feeling, which seems right to me.
Jabber, "the fuss" is to do with me, I wasn't suggesting anything else. I had Type 2 Respiratory Failure and heart failure because of a virus and ended up in ITU, this is the only reason until I speak to them again, that one member of staff has suggested this .....
sorry if I'm not making much sense just got out of hospital today.
I'm sorry. Fuss was the wrong word to use. I've been very lucky (relatively speaking) and at the moment doing well, as I said. You've obviously been having some horrible problems and to be told you could suffer from respiratory failure again is very frightening. In fact I’d almost forgotten, but one charming doctor told me that too. (Obviously the same school of bedside manners!) While I was still in ICU on a ventilator having had the respiratory failure which kicked off my COPD diagnosis, he also told me I might never be able to breathe on my own again! My brain wasn’t in gear at all and I was devastated at the time. My ICU nurse was really angry with him, having been there when he told me this, and she spent a lot of time reassuring me, listing the preventative medicines and techniques that were available. She was right of course. That was in February 2008 and I’ve hardly looked back, the bipap bringing about the biggest improvement a year later.
I admire your list of wants. We are stuck with our diagnosis, but that doesn’t mean we have to let it rule. Keep up the daily walks, however many stops are involved. Great to be out of hospital and lovely to walk by the sea, but take it slowly and look after yourself. Jan
Hi Jabber, it sounds as though you've had a similar experience to me. Not pleasant (as we both know), although I don't remember much about it, I only know what my family have told me as far as most of ITU is concerned.
Sometimes I think Doctors engage mouth before brain, not ideal with their profession. I have since spoken to my Specialist respiratory nurse and she has read the riot act to the doctor and didn't care about the repercussions either. She sees me on a regular basis and knows I'm not going to let this problem stop me from living my live. The most important thing for me is remaining positive
Take care of yourself and I'm glad thinks have improved for you, there is hope for me yet! xx
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