How do you control CO2 levels from getting too high?

@sbt19 I am sorry to hear that COVID took such a bad turn for your husband. I do not have pulmonary fibrosis, but I do have another progressive lung disease, and have learned that "use it or lose it" applies to the lungs just like the muscles in our legs or arms.

If you cannot get your husband to move as much as pulmonary rehab would like, perhaps you can ask about other strategies for his lungs. For example, an incentive spirometer or PEP device (Positive Expiratory Pressure) can help force the CO2 out of his lungs. Perhaps you could convince him to use it 5 minutes an hour in addition to the exercise he is doing now?

Also, is it possible your husband is depressed by this drastic change in health?

I hope the two of you can find a few strategies to help him. Not being able to get enough air is a very frightening experience!
Sue

You can also get him moving by NOT waiting on him - make him get his own [water] (or coffee, mail, newspaper...) Involve him in household chores that make him move - and even breathe hard. Like filling/emptying the dishwasher, moving laundry from washer to dryer, folding and putting away clothes, taking out the trash and pushing it to the curb...

And here is another helpful tip from caring for my Mom - out of bed AND out of the recliner - both places people tend to breathe too shallowly. Meals sitting up at the table, read the newspaper there, play card or table games or work jigsaw puzzles...

Hi Sue,

Thank you for your response. Yes, depression is a part of the problem. His personality was always to see the glass half empty before COVID and that perspective has not help with his dealing with his limitations. He does not like the spirometer. However, I will look into the PEP device. He does have a portable ventilator from Hillrom (Life 2000) that he will use for couple of hours, but he will only use it sitting in his chair. He says it dries his throat out after 2 hours--it cannot use a humidifier like his oxygen concentrator does. He is on blood thinner and gets nose bleeds very easily.

I had not heard of the PEP device. Is it something he can just pick up and use every hour or does it need to be hooked up to the oxygen?

His lung function is only between 31-34% so his oxygen sats drop quickly with any exertion. All your suggestions are excellent, but his personality holds him back from pushing himself. We see a new pulmonologist on Tuesday, so I am hoping this doctor will give him more hope that he can get better so he will be motivated to push himslef.

I have a paralyzed diaphragm and one functioning lung. I'm coping pretty well and am trying to avoid having diaphragm plication surgery, which two thoracic surgeons recommend I do. I try to remember to practice pursed lip breathing to reduce the excess amount of CO2 in my bloodstream, which is causing anxiety. James Nestor wrote a wonderful book called Breath with some helpful information about excess CO2. I don't know enough the excess CO2 issue to know if this would help your husband, but it's simple to do. I also use a hand held plastic things called The Breather, which I got from PN Medical, for respiratory therapy on my own. I think PN Medical actually did some studies with Mayo about the efficacy of using it.

Hi nla,
Thank you for recommending the book. I will try to find it today. I don’t quite understand the CO2 process either. Is the breather the same thing as a spirometer?

Here is a blurb on The Breather: https://www.pnmedical.com/product/the-breather/ and how it works. I'm not sure what the spirometer is; but if it's that thing you blow into to make something rise, it is very different. With the Breather you inhale and exhale and can control the intensity of resistance as your lungs get stronger. They (PNMedical) have training programs on how to use it every month or so on the internet and an APP with coaching exercise programs. I learned so much valuable information from James Nestor's book Breath that this has prompted me to reread it again. Thanks. I do remember one thought that I hope I remembered correctly: SOB is caused more by too much CO2 in the blood rather than a lack of oxygen. That was a shocker, and I hope someone will correct this if it's wrong. You can do a Google search to read about the benefits of Pursed Lip Breathing and see how to do it. I do it when I get winded going up stairs or have overdone things. I'm going to look into that PEP thing Sue mentioned that sounds really helpful. Best wishes! Nancy

Hi Nancy,

They gave my husband the Aerobika OPEP which is a PEP device--it causes vibrations in the airway to loosen mucus. It works well. The RT in the hospital showed us how to hook it up to his nebulizer and he uses it with that. There are several research articles that show positive results.

Thanks for the link to the breather--that sounds like something that will be beneficial and that my husband would use. Ordering it right now!

Sherry (slt19)

Thank you for recommending James Nestor's book. Wish I had known some of what is in that book before all this happened. I also ordered the Breather, which my husband did not get the opportunity to use. He went in the hospital Monday and his CO2 arterial blood gas was 134 +(normal is 35-45). It was too high to measure--off the chart. He passed away yesterday.

I am taping my mouth shut when I sleep at night--I can see an improvement in the quality of my sleep.

Thank you for your help.
Sherry

Sherry -- I'm so sorry to hear about the death of your husband. Please accept my heart-felt condolences. You are definitely in my thoughts and prayers at what must be a very sad and difficult time. Best wishes as you move ahead. Nancy

Sherry - I am so sorry to hear about your husband's death. I feel sometimes people reach the point of "I can't handle one more thing" and they let go.

I wish you peace and comfort as you deal with your loss.
Sue

Thank you. We were married 48 years. I feel so strange in our house without him.