hypercapnia

@denise96 My, your are in a tough spot with your husband. He seems non-compliant with many of the doctors' recommendations, which makes your job much harder.

Unfortunately, his use of opioids is most likely making this scenario worse, since in addition to his COPD and lung cancer, it contributed to the shallow respirations that cause hypercapnia.

I think it is time to bring the oncologist and/or his social worker into the picture to have a serious talk with your husband about what he wants for an outcome. Resisting everyone's efforts to help him tell me he is either deeply depressed or is thinking about giving up fighting, and you need help to decipher which.

I am sending you hugs - this is a horrendous journey for both of you.

Here is a new article from Mayo about the benefits of adding counselling/stress reduction to cancer treatment.
https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/cancer-related-distress/
If he is not a Mayo patient, ask his oncologist - many places offer these services.

Thank you so much for responding. I have called the onologist but never get to talk to him. Just the nurse. In fact I just talked to the oncology nurse this morning because he is showing signs of the co2 getting high again. She told me to take him to the emergency room or call the ambulance. When I talked about it to him, he refused to go. If he would refuse to go in the ambulance if I would call him, then I would just get a hefty bill that I can't afford to pay right now. So, I guess I will have to wait until he is unresponsive again and call for an ambulance again. I feel as if I am between a rock and a hard place.

Please keep in touch. One of my friends had this issue with her Dad, and the eventual result was respiratory failure. He needed such close monitoring that he had to stay in the hospital on full-time bi-pap with oxygen with meds only as prescribed by the doctors (and where he was not allowed to smoke.) You might point out that this is the near future he is facing if he continues his current path.

But truly, the oncologists's nurse can also hook you up with social services.

That is why I called the oncology nurse yesterday. To see about getting a visiting nurse. When the receptionist called me back with the report from the oncology nurse, I was told to bring him to the ER. He told me I am not going. Again, if I call an ambulance and he refuses to go, I don't think they can force him to go. Then I would get a bill that I can't afford at this time. So, I guess I will just have to wait until he becomes unresponsive again and then call the ambulance. He shuffles when he walks and is stumbling. He has a walker but he won't use that either. My hands are tied at the moment. I am having a small Christmas meal tomorrow because I don't know if he will be around next year for Christmas. Heck, I am not even sure he will be here for dinner tomorrow. He does have a video phone call with his palliative doctor at 11:45 today. That should be an interesting conversation if he isn't sleeping. Thanks for your caring.

I experienced this, and think that I might be again. I wish there was a home test or specific symptoms. I don't have a cpap or bipap. I do have some upcoming tests.
Since hypercapnia can cause issues with thinking clearly, it is a really difficult issue. Do you have access to a palliative care team where you live? It could help both of you to figure out what he is thinking when he refuses to follow his providers' recommendations.

Thanks for your input. I hope your co2 levels are not going up. It is dangerous. If you have tests coming up, ask about a bipap. Your pulmonologist can do that. If you have insurance or medicare, they should pay for it. Yes, we are working with a pallative care team but I don't have a lot of faith in them. All they have done so far is give him pain meds. They cancelled his last appt which was dec 24, but no one bothered to tell us.
thank God it was to be a telephone one or I would have been really upset. It is a 30 minute drive. Anyhow, I am calling them tomorrow to see if they can give him something that will help him sleep. He now has said that he would try the bipap so I will try and set something up with that, althoug I don't see him using it.
But you take care of yourself. If you find yourself getting confused, you call a doctor or 911 before it gets too bad.

@denise96 In the year 2023, my husband went unresponsive 11-12 times due to Hypercapnia. He, too has COPD, he had Cancer of the Supraglottis and a couple of lymph nodes. Each of these times I called 911, he was placed in ICU and intubated. In spring of 2023 he also had 6 Chemo and 35 radiation treatments. He then had a PET scan after 3 mos and he was in remission. He has trouble eating so a feeding tube was placed in stomach which can come out if/when he no longer needs it. In Jan 2024, he had another Hypercapnia attack. It's all due to the Co2 not expelling out of his system due to COPD . Also, it was not opiods that caused these attacks. Believe me, I've had EMT's shoving the narcon nasel spray up his nose and he wasn't coming out of it. Once home, he was set up with a non-invasive ventalator where he wore a mask at night. It was not a C-PAP nor Bi-PAP. He was good for a good part of the year till July when he had a hypercapnia attack. No options left so He was transported to Boston, MA and given a trachostomy. He was now put a loud compressor that had a long corrugated plastic tube connected to a mask to put over his trach. His next Scan showed Cancer came back so he had no choice but a complete laryngectomy done late Aug 2024. He had checkups and Speech Therapy but he has no voice at all to this day. Today, just received a call from Boston Oncologist that he needs to have another PET scan done and discuss the outcome. If Cancer comes back, he can not do anything except immunotherapy. I hope some of this made some sense to you seeing your husband has experienced Hypercapnia. It's scary. My husband started recognizing when he thought he was going to have an attack. He'd get shakey and I'd take his co2 which would be like 54 and off we'd go to the hospital. Best of luck to you. It's most difficult being a caretaker. Good luck to your husband. Betsy60

Thank you for your kind response. I am so sorry to hear about your husband. Yes, those attacks are very scary. When my husband was in the hospital on Dec. 15, due to his last attack, he was told he should wear a bi-pap but he refused. When we went for his second chemo treatment, his oncologist mentioned it again and Joe told him that he was not going to use it. He ties every ones hands. He is having some trouble with drinking liquids. He was having this trouble in the hospital and they thickened his food and then he would not eat it. But I have not noticed any choking after his eating or drinking; he told me he was taking tiny sips at a time. Food does not seem to bother him, yet. But he has lost more weight. He weighed in yesterday at 94 pounds. I truly worry about him. Today he said that he is going to make a plan to have a cooked meal once a day to help him gain weight and feel better. I told him he should try for 3 meals a day even if it is crackers and milk. One bigger meal and two smaller ones. But whenever he makes his mind up, he will not change it. So I will support him in this change. The problem is that he does not like most foods and always compains if it is something I cook. We will see how it goes. His oncologist also told him to talk to pallaitive care to see if they think there could be a problem with the opoids he takes along with all the other medications he takes. He now had them give him sleeping pills. He is to take 1 before bedtime, but he is taking 2. This is what he always does if he can get away with it. Then he complains when he runs out. Yes, caregivers had a long and hard road to travel. Hope you take care of yourself and hopefully your husband gets to getting better. Will he ever be able to talk again?

I am so sorry to hear this. How did you measure his co2 at home?