hypercapnia

Posted by denise96 @denise96, Dec 23, 2024

Does anyone on here suffer with hypercapnia? My husband has advanced copd and stage iv lung cancer and has gone into respiratory distress twice since September of this year. Actually it has happened since he was diagnosed with cancer. The hospital wanted him to wear a bipap but he refused. Are there any other options out there to keep this from happening that anyone knows of? Thank you.

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@heart4wi

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

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I didn't. I don't know how. I just recognized the symptoms.

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@denise96

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?

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Denise96 - I totally "get" it. My hubs and yours sound like they have same attitude- stubborness. Their way or no way in some things. My husband's been on oxy for over 37 years and xanax for prob 25 yrs so you can imagine when first time he became unresponsive the xanax was taken away because it surpresses the system as does the oxy which was lessened to 5mgs 4 x day which is nothing compared to his taking over 100 mgs a day (not prescribed that way and of course would run out but there' always acquaintenaces.) He was in ICU to be carefully watched even after the intubation was taken out. He still craves for xanax after 2 years not being prescribed and he finds other ways to get it. I have a PTSD over finding him that many times unresponsive and am driving myself crazy with fear that he'll die from doing something stupid before Cancer gets him. Your husband will probably say no to this, but he really should get a feeding tube. It's no big deal and they get the nutrition they need. My husband wasn't able to always eat the pureed food as he would choke. Even now his throat has narrowed so much from the radiation, he may eat Yoplait yogurt (nothing greek cuz too thick). He was drinking "Gutzy". It's an adult pouch thats loaded with juice and veggies but he now just sticks with IsoSource by Nestle's which he puts in his feeding tube. I think he's afraid to put anything down his throat after having a recent Barrium Swallow test I was allowed to watch and saw how some foods would be very slow getting down because of the narrowing of his throat and only would move down after drinking something. When he was having the laryngectomy the cancer was very invasive and they cut into a nerve and also some of his back left tongue which caused his left side of throat area without feeling. We are now in process of getting a Speech Thereapist specialized in tongue exercises to get his tongue to move more in order to be a candidate for a TEP which is a device they'd place in throat that when he goes to talk will vibrate his muscles and sound will come out. Unfortuneately, we are not even sure if this will come to fruition. It is so sad. I pray daily the cancer has not and will not come back. He's being scheduled for a PET Scan as of this past Friday; However, that scan was to already have been done, but someone at the Boston hospital dropped the ball and never set it up after 4 months. We just learned of this on Friday. I figured he'd find out tomorrow as we were scheduled to see his Oncologist in BOS but they canceled because there isn't a PET scan. I've decided to live one day at a time and think of only the positives. My husband has a sense of humor even without talking and it's also a gift to keep his spirits lifted. The best gift is our daughter gave birth this past July to a beautiful baby boy named Roman and he is definitely the Best Medicine for both of us. I'm happy to write and answer any questions as we both are going through some similar problems. My very best to you Denise and your hubs. - Betsy (Betsc)

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@heart4wi

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

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To measure Co2, you can purchase an oxymeter at CVS, Walgreens, most any pharmacy. I was told, seeing my husband has COPD, that his "safe Zone" is 87 - 100. Once he starts talking strange, getting loopy, somehow I managed to get him to agree to get to the hospital so I would drive him to emergency room. He'd start nodding out on the ride so they would take him immediately. As I've said earlier in a separate message, it's been like 12+ times this has happened. It was not because he took opiates or xanax because he was on such a low dose after the first episode happened. Being an addict had been tough on him but I'm glad our local hospital is a 5 min drive vs havin to drive to Boston. Age can have a lot to do with it especially the lost weight as well as to why he was hypercapniac. His blood tests would come up showing zero opiates and zero benzos in his system but he still went unresponsive. Very scary. Sorry I went down a rabbit hole "heart4wi", but do buy an oxymeter. You'll feel more comfortable in making a decision whether a trip to the ER is necessary or not. Blessings to all. Betsc

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@betsc

To measure Co2, you can purchase an oxymeter at CVS, Walgreens, most any pharmacy. I was told, seeing my husband has COPD, that his "safe Zone" is 87 - 100. Once he starts talking strange, getting loopy, somehow I managed to get him to agree to get to the hospital so I would drive him to emergency room. He'd start nodding out on the ride so they would take him immediately. As I've said earlier in a separate message, it's been like 12+ times this has happened. It was not because he took opiates or xanax because he was on such a low dose after the first episode happened. Being an addict had been tough on him but I'm glad our local hospital is a 5 min drive vs havin to drive to Boston. Age can have a lot to do with it especially the lost weight as well as to why he was hypercapniac. His blood tests would come up showing zero opiates and zero benzos in his system but he still went unresponsive. Very scary. Sorry I went down a rabbit hole "heart4wi", but do buy an oxymeter. You'll feel more comfortable in making a decision whether a trip to the ER is necessary or not. Blessings to all. Betsc

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We do have an oximeter but I wasn't sure what the numbers mean. I think the oxygen level was on the bottom and the heart rate was on top. Is that right? So if the one that tells us the oxygen is low, then we know that his co2 is building up. Right? Let me know if my thinking is correct. Thanks.

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@betsc

To measure Co2, you can purchase an oxymeter at CVS, Walgreens, most any pharmacy. I was told, seeing my husband has COPD, that his "safe Zone" is 87 - 100. Once he starts talking strange, getting loopy, somehow I managed to get him to agree to get to the hospital so I would drive him to emergency room. He'd start nodding out on the ride so they would take him immediately. As I've said earlier in a separate message, it's been like 12+ times this has happened. It was not because he took opiates or xanax because he was on such a low dose after the first episode happened. Being an addict had been tough on him but I'm glad our local hospital is a 5 min drive vs havin to drive to Boston. Age can have a lot to do with it especially the lost weight as well as to why he was hypercapniac. His blood tests would come up showing zero opiates and zero benzos in his system but he still went unresponsive. Very scary. Sorry I went down a rabbit hole "heart4wi", but do buy an oxymeter. You'll feel more comfortable in making a decision whether a trip to the ER is necessary or not. Blessings to all. Betsc

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I have a pulse oximeter. In hospital, docs never used that to measure co2 levels - they had to do blood tests for that. Same with my ED visits. At my worst hypercapnia episode my o2 was around low 90's (where it should be) though my co2 was quite high.

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@betsc

Denise96 - I totally "get" it. My hubs and yours sound like they have same attitude- stubborness. Their way or no way in some things. My husband's been on oxy for over 37 years and xanax for prob 25 yrs so you can imagine when first time he became unresponsive the xanax was taken away because it surpresses the system as does the oxy which was lessened to 5mgs 4 x day which is nothing compared to his taking over 100 mgs a day (not prescribed that way and of course would run out but there' always acquaintenaces.) He was in ICU to be carefully watched even after the intubation was taken out. He still craves for xanax after 2 years not being prescribed and he finds other ways to get it. I have a PTSD over finding him that many times unresponsive and am driving myself crazy with fear that he'll die from doing something stupid before Cancer gets him. Your husband will probably say no to this, but he really should get a feeding tube. It's no big deal and they get the nutrition they need. My husband wasn't able to always eat the pureed food as he would choke. Even now his throat has narrowed so much from the radiation, he may eat Yoplait yogurt (nothing greek cuz too thick). He was drinking "Gutzy". It's an adult pouch thats loaded with juice and veggies but he now just sticks with IsoSource by Nestle's which he puts in his feeding tube. I think he's afraid to put anything down his throat after having a recent Barrium Swallow test I was allowed to watch and saw how some foods would be very slow getting down because of the narrowing of his throat and only would move down after drinking something. When he was having the laryngectomy the cancer was very invasive and they cut into a nerve and also some of his back left tongue which caused his left side of throat area without feeling. We are now in process of getting a Speech Thereapist specialized in tongue exercises to get his tongue to move more in order to be a candidate for a TEP which is a device they'd place in throat that when he goes to talk will vibrate his muscles and sound will come out. Unfortuneately, we are not even sure if this will come to fruition. It is so sad. I pray daily the cancer has not and will not come back. He's being scheduled for a PET Scan as of this past Friday; However, that scan was to already have been done, but someone at the Boston hospital dropped the ball and never set it up after 4 months. We just learned of this on Friday. I figured he'd find out tomorrow as we were scheduled to see his Oncologist in BOS but they canceled because there isn't a PET scan. I've decided to live one day at a time and think of only the positives. My husband has a sense of humor even without talking and it's also a gift to keep his spirits lifted. The best gift is our daughter gave birth this past July to a beautiful baby boy named Roman and he is definitely the Best Medicine for both of us. I'm happy to write and answer any questions as we both are going through some similar problems. My very best to you Denise and your hubs. - Betsy (Betsc)

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Thanks for your answer. Yes, my husband is very stubborn. Says he wants to help himself, but balks at most foods I mention. He wanted campbells chicken noodle soup today. I asked him if wanted some oyster crackers to put in the soup and he said,"No. Crackers are dry." I said not if they are in your soup. Well he said the does not like crackers. So i said, OK. We have boost but he does not want it. We have vanilla pudding in the little cups and jello in the little cups. No, he does not want any of that. I made him milkshakes but after two, he did not want anymore. The ice cream got old, so I threw it out. I suggested plain rice or mashed potatoes with butter and he just looked at me like I was nuts and rolled his eyes. What the heck does he want? Wish I Knew. He is about to run out of his oxycodone on Tuesday. He should have enough until next monday when he will get them refilled. I am the one that gives them to him, and I did give him like 8 extra when he asked for them, but there still should be more. He insists that he does not know where I put them, but I don't believe him. He has lied about this before. His xanax has been gone. His oxycodones are 20 mg a pill. He is supposed to take them 4 a day. He has no more oxycontin and said he is not going to get them refilled because they cost him 90.00. This tells me that he did not want them for pain but for the high. If they were cheaper, he would still get them. Like you, I worry he will pass from all the drugs in his system before the cancer ends it. I know he has someone getting him pills. The other day he showed me a jar of medical marijuana someone had given him. He may have traded some oxycodones for the marijuana. I will never know. And believe it or not, he used to a drug/alcohol counselor. So, he knows about drugs. Way back before i met him, he was a big pill popper. We did not get married until we were both early 40's. I am 69 now and he is 68. This pill problem has been going on for years. Plus he used to drink a lot of beer. He was a functional alcoholic. But he had to quit drinking beer early last year as it began to bother his stomach. I am tired of worrying about the pills, etc. My husband should be eating thickened foods as he does have trouble swallowing some things. When he was in the hospital last month, they were thickening his liquids and he would not drink them. He hardly ate any of the food. Said it was crap. They wanted him to eat thickened food and drink the thickened liquids but he refused. But he pretty much sticks to noodles. He would never agree to a feeding tube. I already mentioned it and he said NO. He is supposed to use a bipap at night to help push out the co2 but he refused. The doctors are getting a little tired of him. So am I. lol When does your husband get his pet scan? Joe is having a brain mri on this coming thursday. This was also to be done 2 months ago, but because we were too early for the last one, he refused to wait. Then they were going to do it while he was in the hospital in december, but they never did. Probably because he signed the AMA release form 3 days after he got there. As I have said before, he is his own worst enemy. Congratulations on your new grandson. NOthing brings a smile to the face like a baby. I have no grandchildren because neither one of my boys have children. My oldest son is married to an oncologist nurse and neither of them wanted children. My youngest is 40 and is living with a girl who is 45 and already raised 3 boys. She is a little old to be having babies. It is nice to be able to share our days and problems with someone who understands. You mentioned Boston, so do you live in MA? I live in pennsylvania and we are about an hour from Pittsburgh. Talk to you soon. Have a good day!

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@heart4wi

I have a pulse oximeter. In hospital, docs never used that to measure co2 levels - they had to do blood tests for that. Same with my ED visits. At my worst hypercapnia episode my o2 was around low 90's (where it should be) though my co2 was quite high.

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I did not know that the oxymeter would to that or not. I am not sure, but when he goes to the doctors they always use one. Maybe there is a different one to buy that does measure co2. I did look up info on the oxymmeter and I guess you can tell by the oxygen level. If it is below 90, the co2 level is getting high. But I guess this did not work for you. You are right, they can be off. Usually I can tell by his behavior. He starts acting goofy and talking about nothing that makes any sense.

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@denise96

I did not know that the oxymeter would to that or not. I am not sure, but when he goes to the doctors they always use one. Maybe there is a different one to buy that does measure co2. I did look up info on the oxymmeter and I guess you can tell by the oxygen level. If it is below 90, the co2 level is getting high. But I guess this did not work for you. You are right, they can be off. Usually I can tell by his behavior. He starts acting goofy and talking about nothing that makes any sense.

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There is not. The pulse oximeter shows only the pulse rate and oxygen level. A blood test is the only way to measure co2. Also, oxygen does not have to be low for co2 to be high.

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@heart4wi

There is not. The pulse oximeter shows only the pulse rate and oxygen level. A blood test is the only way to measure co2. Also, oxygen does not have to be low for co2 to be high.

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Ok. Thanks

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