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 Need some advice on O2
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Calycu
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8 Posts

Posted - Apr 29 2018 :  11:15:33 PM  Show Profile  Reply with Quote
Hi all. I've been lurking for a while reading the posts on this forum, and finally decided to introduce myself. My husband smoked for about 50 years, and has pretty severe COPD. He finally quit 9 years ago (he's 75) but 2 years after that was diagnosed with cancer. They treated a very large tumor in his left lung, successfully, but the lung's pretty much useless. He had another spot treated in the other lung last year. He's got less than 15% lung capacity left. He also has some back problems -- stenosis, and some disc damage, we think from the radiation of his first cancer treatment. So, he can't/won't exercise. From reading here, it's clear he also has hyperinflated lungs, as his belly is quite impressive, and he really has to be careful about overeating.

He has O2, but won't use it. He seems to hate everything about having the o2 -- the tubes, the cannula, the tank when we're out and about. But he can do so little anymore -- he was always very physical (we built our own house "back in the day" and had a small farm, where he took care of all the equipment and a few animals) and now he gets SOB just walking to the bedroom to go to bed.

So with respect to the O2: He seems to believe he doesn't need to use the O2 unless his oxy level drops below 90 or so. He manages to get by with pursed-lip breathing and pacing himself, but it's very difficult to stand-by and listen to him huffing and puffing. Wouldn't using the O2 be beneficial to his body, even when he's not in the 90% danger zone? Any advice about how to convince him to use the O2?

Life's a little rough dealing with this -- he doesn't feel very useful anymore, and that weighs on him a lot. I have had to take on almost all the work around the house, and I have to be honest and say that I resent that a little. (He's also always been a DIY'er, and he thinks I should be able to do all those things that he used to do!)

Anyway, this has been kind of a long introduction -- sorry 'bout that!

Cathy

JR WA
Rookie

USA
11 Posts

Posted - Apr 30 2018 :  01:47:24 AM  Show Profile  Reply with Quote
Hi Calycu, reading your intro it seems you and your husband and me and my husband have a lot in common minus about 10 years of age on our part. My 50 pack year husband is 63 and could more or less be a carbon copy of your husband! We still have 12 acres and try to keep up with it all - COPD included. Our story goes back now almost 4 years in the tougher stage of this inevitable disease for smokers - two years of obviously sick and undiagnosed until influenza's grip on his air convinced him to go in and get evaluated; then almost two years of COPD managed, improved and now stable. When he finally went in to the doctor he clocked in at 83% saturation and they were surprised he wasn't in more distress - but I know he was living in the low 90's for long before that given his gray color, weight loss, headaches, really low energy, mental sluggishness and constant tight cough. Fast forward to now treated, we're in much better shape (although he's still using nicotine regularly in smokeless form.. grrrrrr) and we're holding our own. But life is still different now.

O2 isn't fun to use, as your husband figured out. Mine used it for a few days until he took the big plunge and tossed the cigs for other forms of nicotine. Did O2 make him feel better? Somewhat, but not enough to convince him to use it regularly. Your husband knows if it helps him feel better, and would likely use it if it was a substantial improvement. (On that note, humidified O2 can be less annoying). Of course his body would appreciate proper O2 levels so his docs are the best ones to comment on how much and how often he should use it on a regular basis. If they say 90% cutoff is his level, and husband sees that pan out for him, there you go. Remember what goes in as O2 must come out as CO2, so with decreased lung function clearance of waste gas might be an issue... just a thought. So higher O2 intake without good CO2 elimination might be problematic. Doctor questions.

Your question of how to convince him to manage his COPD is very important - as you are his most important support person. That's a tough one and everyone involved has their stuff to figure out. The very hardest thing for me was and is still how to manage my reactions to his illness (and disabilities). Where do you start?! I tried to get him to quit smoking for years, seeing this coming and the I Told You Sos are always just under the surface; and I too have had to pick up a lot more slack to cover his reduced abilities; and the mental lapses - low oxygen isn't a friend to our metabolically demanding brains - memory loss, delayed processing, loss of multitasking, loss of get up and go.... All have had an impact on our present and future. How do you not resent that some? Or a lot :-/

The 30,000 ft view thing I've tried to do, and I'm not always good at it, is to forgive him for being a knucklehead and support him in our aging years in a way that really supports him. Without losing myself in the process - of course. Like being nice and non-judgemental even when I want to growl at him. I think about my prior family members now gone, but who died long and difficult deaths - how I look back proudly to the times I was there and helpful (loving), and look back regretfully when I was impatient or escape-prone (ie, non-supportive). Our husbands are now likely short-timers compared to ourselves. I'm a headstrong woman and no pushover to do something i don't want to do, but I do want to look back and know I was nice. So I (usually sort of) keep a smile on my face, and don't hold back from doing the things i want to do that I enjoy. And no the bathrooms don't get cleaned as often, and there's usually dirty floors here and there with less vacuuming, but I do find a balance and that's good enough for now. In other words, I do what I can without burning myself out. This is one long row to hoe.

Your intro isn't long - my blabbing is long! Sorry about that! But I did want you to know you aren't alone. This isn't fair - but it could have easily been us instead of them if we had been the ones to get sick - heart, stroke, MS, dementia - geeze it's a minefield this life of ours. Hang in there, know what you can and can't control and stay positive except when you're with your girlfriends and then let fly and they'll support your moments. Good luck and write anytime, someone's always out here! :-))

Janice
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Calycu
Rookie

8 Posts

Posted - Apr 30 2018 :  07:49:52 AM  Show Profile  Reply with Quote
Wow Janice, sounds like you are the proverbial "fly on the wall", watching my life unfold! Our stories are very similar .. especially the part about the housecleaning! Although, to be honest, I've never been much of a housekeeper! I think one thing that makes my situation difficult is that I'm 14 years younger -- still working (from home, 2 days a week), and pretty healthy. I try to keep my own life going, but feel guilty if I go off without him too often. I have a very serious quilting hobby, which keeps me sane and also has recently provided me a group of "sew-and-sew" friends. But so far, I haven't unloaded too much on them. May be I should lean on them a bit more, I don't know. I hate to be a whiner ...

Anyway, thanks so much for sharing your experience. It does help, just knowing someone can relate. I got up this morning, hit refresh on this page, not expecting to see anything, and found a new friend!

Cathy

Cathy
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JR WA
Rookie

USA
11 Posts

Posted - Apr 30 2018 :  12:03:42 PM  Show Profile  Reply with Quote
You nailed it - one partner functioning old and one functioning younger... tough. Me and the husband are the same age but we don't function the same. That exactly has been the harder part. I think the best we can do is find balance and oh yeah patience. And kindness - something I have to continually work on as I'm a cut to the chase kind of gal. But here we are, husband and I, in an ok place after 4 years of the Coming To Jesus regarding his health. I call it a win at the moment but this is a moving target. Your husband will acclimate to what you can cheerfully give him, and yet live your life to. Burn out is a very bad thing and I see it in friends where they over accommodate and blow a fuse making them unavailable to help at all. That's a tragedy as it's avoidable if everyone is ok to give a bit or a lot. Great theory anyway.

I think it's easy to figure out which new friends will be ones that will accept (gracefully) being leaned on a bit. Turns out that a lot of people lean on me but I don't always lean back on certain people that don't seem to gel in the getting leaned on department. We women are pretty intuitive, and I think we figure it out if we're paying attention. I like to love all my friends for who they are and that means the selfish ones too as they give me different rewards in knowing them. You'll figure it out, and it sounds like you're on you way.

Onward we go, and 'that which doesn't kill us makes us stronger'. Cheers :-) ps, yes you did find a new friend, let fly anytime! It's nice to know that you're out there too.. thanks!

Janice
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jmrommes
Contributing Member

1910 Posts

Posted - Apr 30 2018 :  8:38:00 PM  Show Profile  Reply with Quote
You ladies have your work cut out for you, and it's good that you found each other. I can't help you a bit with the caregiving aspects of this, but I can give you some information regarding O2. Those magic numbers, 90 or 88, depending on who you're talking to, are the numbers below which your husbands' risk right heart failure and brain damage. If your husband truly can keep his O2 levels at 90 with PLB and pacing himself, he's really not going to do himself any harm. If he can't, then he does run the risk of heart and brain damage.

As for would he feel better if his O2 sats were higher; maybe he would. Some people do and some don't. He would certainly be able to do more before he gets short of breath and needs to pace himself and use his PLB techniques. He would probably be able to exercise and get stronger. That would help him be able to do more with or without O2 with less effort. So the real story is that O2 helps, especially if you use it to get stronger and in better shape. If you just use it to keep your sats up, that helps prevent the damage low O2 sats can do, but it won't do much else for you.

As for the CO2 issue, that's very individualized. Generally speaking, however, as long as people are exerting themselves and don't turn their O2 up when their sats are still good, even if they're really short of breath (sob), they can work through the SOB and continue as long as they can manage it. If their O2 sats are going down, they can increase the O2 so that their sats are in a good range. The thing with CO2 retention is real, but it's really a question of knowing what your sats are and doing the appropriate thing that makes a difference.

If either of your husbands were true CO2 retainers, they'd have bi-pap or trilogy machines to use at night. They don't. so that's not something to worry about at this point.

Good luck to both of you!

Jean

Exercise not only lets me live, it enables me to have a life.
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Calycu
Rookie

8 Posts

Posted - Apr 30 2018 :  10:44:23 PM  Show Profile  Reply with Quote
Jean, thanks for that info on the O2 -- helps a lot. He will use it when absolutely necessary, like when trying to walk from car to stores in hot, humid weather. I think I just have to trust him to know what he needs. Guess I'm worried about that moment that might come when he can't make that judgement anymore.

Janice, I have reached that over-accomodating, explosion point a couple of times, and know exactly what you mean. First time, ended up flipping him the bird! I'd never done that to anyone before ... well, other than when my brother gets a bingo in Scrabble :-) Hubby kept telling me I'm trying too hard to take care of things/him. But yet, I DO have to take care of so many things! It's like walking on a tightrope to find the right balance.

As you said, onward we go!



Cathy
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