Using Supplemental 02 When You Are a C02 Retainer

[BHnCA]

Have you ever heard about C02 retention?  I was told to use 2L of 02 at night time which meant bleeding it into the hose of my CPAP hose. In the middle of the first night trying it, I awoke gasping for air. It was terrifying. When I called the pulmonologist the next day to ask about it, he was adamant that 2L of 02 “couldn’t hurt anyone.”  But I knew something had gone wrong. In a casual conversation with my niece sometime later, who is a trauma nurse, I mentioned it. She wasn’t sure, but thought it might have something to do with my normal 02 base line, because it was her experience that when giving supplemental 02 to preemies in the neonatal unit, they have to watch their baseline continually to avoid over saturating them with 02 or it will shut off their drive to breath.  Needless to say, I basically fired the first pulmonologist because I felt he’d almost killed me, but the 2nd pulmonologist told me to use the same level of 02 at night too. The same problem arose, but that time it left me so breathless for the following two days that I couldn’t even walk to my kitchen without gasping for air. Since the doctor discounted what I believed about my own body, god forbid, I simply quit using the 02 at night and was a lot better off. My newest pulmonologist must have been doing is homework, because he immediately looked at my PFT and CPAP readings and said I was a “c02 retainer”, meaning that I don’t totally exhale air and it turns into carbon dioxide, which builds up in my system to a point that my brain tells me to stop inhaling.  Mystery solved!  I’ve learned that I CAN use supplemental 02, but only while I’m doing housework, gardening or doing exercises which utilizes the extra 02. Not all pulmonologists recognize this reality, apparentally, because when I had to go to an different pulmonologist recently for surgical clearance he, too, told me to use the 02 at night.  I told him about my previous experiences in doing that, but he was adamant I use the 02 at night. I did as he ordered and guess what, the same problem occurred.  Just wondered what you might know about this condition.

This is why I’m a firm believer of a patient making it their business to be their own best advocate.

[Thomas3.20.2010]

Being a Co2 retainer can be very tricky. Other patients report similar experiences as you yet withholding much needed oxygen is not a good solution. It's incredibly frustrating that pulmonologists don't take the time to explain the condition and the proper treatment. 

BHnCA‌ Have you ever been to pulmonary Rehab? Have you spoken with RTs and other CO2 retainers about this condition and their solutions? Have you and you you get ABGs regularly? When you read material on the web go to reliable resources. Here are some articles n CO2 retention from 2 reliable sources:.ncbi.nlm.nih.gov and copdfoundation. Another great resource is EFFORTS which is peer to peer support with some RTs and expert Mark Marcus giving their best advice when members go off track.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3682248/ 

CO2 Retention 

Some oxygen companies may be reliable - or not! If you read their material be prepared to be flooded with emails and phone calls wanting to sell you respiratory devices.I personally like to read and watch youtube videos meant for RTs. If you can talk to an RT they will most likely take the time to speak to you with patience. understanding, and practical solutions. 

You may be weary of my advice here since I am not a retainer myself but withholding O2 especially overnight is dangerous! Regularly utilizing oxygen therapy can allow people to be more active and mobile by decreasing shortness of breath. It also can significantly improve quality of life, and in many cases extend life expectancy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2897694/ 

Please do some pursed lip and yogic belly breath breathing every single day! It will help you get that dead air out and allow Oxygen in! Also as noted in the articles get a pulse oximeter and use it regularly. Keep your Oxygen day and night between 88% and 92%. Without oxygen you body cells die off - including and especially brain cells!

Great question. I hope this helps!

[BHnCA]

The reading links were eye opening. It’s no wonder I’ve received mixed instructions on using supplemental 02. Yes, I have participated in pulmonary rehab. It was the best thing I ever did because I learned, firsthand, the value of pursed lip breathing, etc., not to mention exercise. Those practices provided me with enormous relief.  I’m not alone in my frustrations regarding lack of such programs in this rural setting, either - there was a post on the Emphysema Facebook page regarding that very dilemma within the country. I think there must just be a huge failure in disseminating information to the public at large. Or maybe nobody cares to be educated about these subjects until they become a victim of lung diseases them self.  Human nature.  As for using the 02 at night, my pulmonologist told me last week NOT to do so after hearing what happened to me on the 3 previous efforts. He said that since I’m a “top breather”, it’s not safe doing anything that may increase my C02 levels. He also ordered a new ABG and PFT, because he wants to find out if I should be using a BiPap instead of CPAP machine at night. I’m very anxious to learn the findings! It’s also interesting that you specifically mentioned keeping my 02 @ 88-92.  I’ve read the same figures in so many articles, yet mine - even as I write - hops up to 96-98 sometimes, at which point I start feeling as if I’m hyperventilating.  I always figure the C02 has increased, so I resort to belly & pursed lip breathing to try and calm it down.  That’s what I miss most about going to rehab - getting the therapists’s opinion on such things. I only wish that my doctors were more appreciative of the therapist’s input, instead of minimizing their take on things.  

[elvan]

When I worked as an RN...we were routinely taught that COPD patients could not get more than 2L of O2.  I suspect that all COPD patients were considered to be C02 retainers even if they weren't.  My order is for 2L at night but I increase it when I am having significant issues with fatigue and shortness of breath...particularly when I am getting sick.  I find it incredibly frustrating when doctors argue with each other or dismiss the recommendations of therapists.