Co2 retention : Hi all, can anyone... - British Lung Foun...

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Co2 retention

Thepainterswife profile image

Hi all, can anyone advise on how to keep Co2 levels down ? My husband was rushed to hospital 18 months ago in a very serious condition due to a build up of Co2 . We were told at the time there is no way of knowing when this is happening ( other than blood tests) and that it may or may not happen again 🤷🏻‍♀️ I have spent the time since worrying and now he is particularly unwell I’m wondering is this happening again ? Four weeks ago his chest was very tight and breathing very, very difficult he was given a course of antibiotics and steroids. There was very little improvement and he was using oromorph more than usual to get some relief The Dr then prescribed more of the same ( different antibiotics) he’s four days in on those but still suffering frightening episodes of not being able to breathe despite increasing salbutamol and saline nebulisers. We have been dealing with emphysema for 17 years now so I’m not easily frightened but I must admit the thought of a repeat of the previous episode terrifies me and we’ve been given no guidance as to how to keep the Co2 levels down . He does do the breathing cycle he was shown and that along with Oromorph has helped so far , is there anything else he should be doing ? His stats are fine but they were during the previous incident right up until the morning I found him on the floor gasping for air. Is there something more we should be doing or is this deterioration we just have to accept ? Any advice would be appreciated xx

38 Replies
Damon1864 profile image
Damon1864Volunteer

Hi please phone an ambulance of you are worried at least you will know wether he needs to go to hospital Please let us know how he is getting on. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

Lol1944 profile image
Lol1944 in reply to Damon1864

Agree 1000%

Ian1967 profile image
Ian1967 in reply to Damon1864

Excellent advice Bernadette, Co2 Retention is a very dangerous condition I suffer from it as a result of Scoliosis which I have had since birth, if not treated it causes drowsiness in the morning, headaches and violent body tremors, before being put on BiPAP and oxygen at bedtime I was always falling asleep in the morning and I also suffered the tremors, I never got headaches but the tremors were bad.

Since being on BiPAP my symptoms have completely stopped, I use it for 2 hours in the afternoon and around 7 and half hours at bedtime.

Ian.

Thanks for the reply Ian1967 we weren’t even told what symptoms to expect 🤷🏻‍♀️Thinking back to the incident he was very tired and actually took to his bed for the first time since being diagnosed years before ( we were told after by the respiratory nurse that was the worst thing he could have done) he was also very shaky (although I wouldn’t describe it as tremors ) he didn’t have headaches but he became very confused at times Geoff was on Bipap in hospital but not given one for home use . Thinking about those symptoms now , he doesn’t have any of them so probably the fact that the meds aren’t working as well now is due to the natural progression of the emphysema. Oromorph is still helping so I’m thinking I should maybe speak to the Dr re the dosage of that . I’m so glad you’ve been given the Bipap and are benefiting so much from it 🤗

Damon1864 profile image
Damon1864Volunteer

Thank you , I'm not on bipap to but have been on it in hospital. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

Here in the States they’d be using Bipap and possibly vent at the ER. 17 years is time for a bit of progression as we know. I feel that while all my Drs are polite once I made it clear that I did not want to go the transplant route just to keep myself anxious as to when that might fail, they treat me polite but with the definite vibe that there is only so much they can do. So I get it & am my own advocate. The thing with carbon dioxide loads is that you can simply stop breathing. Not feel the urge to breath. I hope this is acceptable to share. If not I’ll know soon enough.

I lost my 55 year old cousin to covid last week. He was totally against getting vaccinated. Rather an anti government attitude sadly. He contracted covid. He tried Ivermectin. 🤦🏼‍♀️ He stayed home several days thinking he could kick it. Many do & survive. He didn’t have a pulse ox. Finally his brother took him to the ER. My cousin made the statement if they put me on a vent I’m as good as gone. They tried all the normal things in the ICU. IV Meds. Non invasive ventilation. Prone positioning. He caught pneumonia, was then on mechanical ventilation & during the four weeks battle with covid his alveoli had filled with white blood cells & fluid. Inflammation throughout his body. Seriously , I mean his body swelled double it’s normal size. There is a delicate precision to mechanical ventilation in that the settings must be near perfect. Which is difficult to know for a certainty just what it should be set at. If the pressure is to high lung damage etc. But with the enormous amount of inflammation it was just not getting gas exchange into his alveoli. They had him paralyzed on propofol. A few days before he passed his saturation had dropped to 40! I don’t know how long it was that low or if it ever went up again. They decided to take him off the sedation my guess to check brain function. He passed several hours later. Most of the time he was under propofol. That gives me comfort. Our side of the family deal with genetic alpha1. He just would not give any attention that being genetic he could possibly have at least one Z alelle. His Mother had passed with multiple myeloma. There is a connection between multiple myeloma & alpha1. Alpha1 is an anti inflammatory molecule. It is also a protease inhibitor. When one’s level of alpha 1 is low inflammation is not well controlled. I’m certain his Mother had at least one Z alelle & passed this to my cousin. My cousin was on meds for his blood pressure. I’d noticed pretty serious bulging veins on his legs when he’d wear shorts. Like a lot. So he had some underlying conditions. Maybe if he’d been vaccinated he’d have had a chance. Anyway I’m rambling on as it’s still so raw!

Take care of yourself. When you think something isn’t right go with that gut feeling. 💕

Bkin profile image
Bkin in reply to Maricopa

So sorry for your loss Maricopa 💖

Caspiana profile image
Caspiana in reply to Maricopa

I'm so sorry Mari. What a sad time for all of you. Unfortunately, I fear we will all lose someone we know before this thing rides itself out. Plus it will never leave. We must live with it but we will learn to I think. Sending you a gentle hug and much love. xx 💕💓

So sorry for your loss , you’re not rambling at all , it’s understandable that we all need to off load at times like that . Geoff was treated with a mask in ER which they said was similar to but more powerful than Bipap then once stabilised ( 8 hours later) he was put on a bipap on the ward . I asked if we would be given a mask for home use but was told that would only happen if he had several hospital admissions . He has done incredibly well to manage the condition for so long and I’m under no illusion that given his age (74) this is probably a natural progression but if it’s possible I’d like to avoid a repeat of that traumatic experience, I’d feel much happier getting him to hospital before it got to that stage ( but this is the point- how can we tell ?) he just woke up unable to breathe and none of his meds made any difference at all ! If only there was a device to measure Co2 as there is oxygen x

I think as was said earlier, that when he wakes like that the best thing to do is phone 999 for an ambulance. The paramedics will give him a thorough check and assess the need for a trip to the hospital. I have stage 4 emphysema and struggle at times but not to the extent your husband does. I can understand how distressing it is for both of you. Best wishes to you both.

That’s just what happened 18 months ago and it’s amazing how you can worry “should I shouldn’t I “ when it comes to dialling 999 but when it’s absolutely necessary you just know I was just wondering if there s symptoms to watch out for to avoid getting to that life and death stage whilst still at home x

I understand that "should I shouldn't I" thinking. I'm sorry that I can't help with regard to how to avoid getting to that stage. I do know that changes to my own lung condition can come on quickly without much prior warning. As you said, a finger meter to detect co2 levels would be helpful.

I don't know a lot about this, but the only thing I have read is what Ian1967 mentions re Bipap.

There is some reading about Respiratory failure, symptoms and mention of the Bipap here:-

kentcht.nhs.uk/service/resp...

Don't hesitate to contact the nurses on the BLF helpline for any concerns you may have.

blf.org.uk/support-for-you/...

Hope this information is of some help

Best wishes to you and your husband.

Ian1967 profile image
Ian1967 in reply to Bkin

Excellent link by Kent Community Health Trust Bkin, that’s pretty much how I was originally diagnosed with Co2 Retention, I was first admitted with Type II Respiratory Failure they thought this was a result of COPD, but this was later changed to my condition being caused by my Scoliosis which I was born with, I was also born with Hydrocephalus which caused me to have a cerebral shunt fitted when I was eight months old, as a result of this my Scoliosis was left untreated.

My Scoliosis stops my lungs inflating properly causing my Co2 gas exchange problems. I was told when I was diagnosed with Type II Respiratory and put on BiPAP and oxygen whilst I was in hospital, I was also I would probably have to use BiPAP and oxygen at bedtime for the rest of my life, unfortunately I was sent home on oxygen 24/7 only without BiPAP until I was able to have my own BiPAP machine set up, which unfortunately had to be done at a different hospital.

I was OK for a few months but unfortunately I was admitted to hospital just a few days before Christmas 2017 suffering from Co2 Retention again, I was treated again with oxygen and BiPAP in hospital for a couple of days, but on New Years Day 2018 I was admitted HDU in hospital and finally a few days later I was admitted to the Respiratory Unit and finally got my own BiPAP to use at home, since then I haven’t had any Respiratory Infections or Co2 Retention symptoms.

Ian.

Bkin profile image
Bkin in reply to Ian1967

Goodness Ian what an ordeal from such a young age, poor you. I am so glad now that since having your own BiPAP you have been free of Respiratory Infections and Co2 retention symptoms, that's great to hear and thanks so much for sharing your story, appreciated, I am sure it will help many others.

Very best wishes to you.

BK

Oh Ian what an awful time you’ve had ! Respiratory failure is terrifying I really am so glad that you got what you needed in the end and you’ve been so much better since and very grateful for the info from both you and Bkin Hearing your symptoms and thinking back to how Geoff was eighteen months ago and following the links supplied by Bkin I don’t think Geoff is suffering from Co2 retention but I will call his Gp tomorrow to see if anything more can be done given that the prescribed meds don’t seem to be doing anything .

Thank you Bkin , I’ll check out those links 🤙 I feel stupid now that I haven’t done some research online but all we were told was “only a blood test can show Co2 levels “ and I’ve mistakenly taken that to mean there are no warning signs .

Bkin profile image
Bkin in reply to Thepainterswife

No need to feel stupid tpw, when we are worried about things sometimes its a lot easier to ask others. something seems to happen to the mind when stress levels are high, its the body's way of letting us know I guess.

Take good care of you too

Wishing you and husband wellness and feeling more relaxed and happy.

🌺💖🌺

If I had your Husbands symptoms and medical history I would go to A and E if I could get there on my own steam a d if not I would call 111 or 999, in A and E they would most likely check his blood gases and check for infection etc. It would be unusual to have such a sudden detonation unless something is causing it eg Infection which could also affect his ability to expel Carbon Monoxide Hope your husband can get some answers and feels better soon x

Hello ThePainter's wife, 😊✋

The symptoms you can expect from hypercapnia are headaches, sluggishness, sleepiness especially during the day, memory loss, paranoia, depression. In severe cases the patient is very shaky, can have nausea and involuntary jerking movements.

His oxygen levels may be normal with an oxymeter but his blood oxygen levels may be extremely low, the only way to tell is for the hospital to do an arterial blood test.

Many people use a bi-pap machine but it may not be suitable for some patients. If he is on oxygen, that has to be strictly regulated. Using more than is prescribed by the hospital could make things worse in terms of retention. You should be given advice on how high his pulse meter should read when using oxygen. If he suddenly becomes disoriented, confused or very sleepy you must call an ambulance without delay. I had / still have hypercapnia in my left lung. 😐

I hope he is feeling better today. Take good care.

Cas xx 🙋🐕

Thank you so much Cas , he has none of the symptoms you describe 😊just extremely breathless, much more so than usual . I’m quite confident now having read several posts on here that we re not heading for a repeat of January 2020 although obviously I will be vigilant That episode frightened me so much I think I’m just worrying and waiting for it to happen again but I feel so much better now that I’m armed with some information 😃 We have been aware of the dangers of incorrect oxygen use for some years now , he was told he was “oxygen sensitive “ around 2017 , normal oxymeter readings for him are 88-92 and his initial volume of 3 was reduced to 1 Although his readings have dropped at times during the past few weeks he has been able to raise them with breathing techniques so hopefully this is a “normal” exacerbation 🙏 I know it must be very difficult for the professionals to relay all the relevant information to every individual but I do think we’re often sent on our way and expected to get on with it with no knowledge of what we’re dealing with . Thank goodness I found this site and people like you ! I’ve learned so much and I am truly grateful for all the advice and support . I hope you are doing well , you take care too xxxx

❤️

If he is not diagnosed as being a prolific retainer of Co2 and is on prescribed LTOT and or ambulatory o2 then maintaining his sats at 88-92 % should give no real concern with reagrd to CO2 retention,it is what most COPD patients in a hospital setting woud be based on in terms of oxygen provision for that very reason as they don't know each individuals condition.it is possible that an over prescrition of Oramorph can actualy slow down the respirtory system but unless it is a dramatic incresae this is unlikely,i am on both continuous O2 and Oramorph so i am not just reading this from a manual and others have given you all the signs of Hypercania which i am sure you are already aware off.The bottom line is always refer to your respiratory clinic nurse if you feel you might have a problem but i get the impression that you are very much on the ball with the current situation.

Best wishes Ski's and Scruff's x

Thanks Skis , after reading all the replies I’m pretty sure worry on my part more than actual symptoms prompted my original post . I’ve relayed all the info to Geoff and he actually seems a bit better today - knowing he has none of the classic symptoms has put his mind at rest and mine too . I was unaware of how Oromorph affects the respiratory system - so much to learn about this disease and it’s management 🤦🏻‍♀️ as I’ve already said thank goodness for this site ! I joined shortly after Geoffs hospital admiration and I’ve learned more and had more support in the past eighteen months or so than in the previous 15years ! Thanks 😊 x

My pleasure and i do hope i didn' alarm you with the Oramorph info,basicaly we take it in such a low dose and it realxes the respiratory system and associated nerves of the muscles we use to breath as far as i can make out from the little research i have done into it?

🙃 x

No you didn’t alarm me at all I’m just amazed at all the info on here that comes from research or personal experience that so many of us benefit from 😊 And now I’m relaxed and looking forward to reading posts I really enjoy like who’s going to win next years grand national 😂 x

Ha Ha take your pick.grandnational.fans/tips/x

Had a look , makes no sense to me at all - I’ll stick with the one who’s name I like best 🐪😂 x

If i am fortunate enough to survive until the next running of the Grand national i will pass you on a tip then.😂🐎 x

Hanne62 profile image
Hanne62 in reply to skischool

Oi! I’ve told you before, less of that talk! x

🤣😂 get him told ! x

There you go then a wonderful incentive to keep on going 😃 Last time I won was with L’esgargot around 1980 so I’m due a win 😂 x

Yes if i remember rightly he won it at a snails pace😂x

😂 that’s why I picked him because I thought I was clever knowing what it meant 😂🤣 and I’ve just googled him , it was 1975 so I’m really due a win !! x

It sounds like a 999 to me. Bless you, I had similar recently my husband had the best care in hospital. Now, look after yourself a bit. All the very best Mrs Thepainterswife, you sound like a Dutch Master's f

Yes my husband was saved by the hospital staff and treated very well it was the trauma of finding him suffering from respiratory failure that was so frightening. Armed with more information I feel better equipped to spot the signs now 😊. My husband was a commercial decorator but I have to admit “the painters wife “does conjure images of romance and Vermeer 😂🤣😂

Ha ha, well you have retained your sense of humour. I am still raw from when my husband went to hospital with similar symptoms. We are all here. I imagine it was traumatic for you. look after yourself xxx

Thank you 😊 xxxx

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