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Calycu Posted - Apr 29 2018 : 11:15:33 PM
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!
18   L A T E S T    R E P L I E S    (Newest First)
rjh-spokane Posted - May 21 2019 : 02:41:03 AM
I just have to jump in here! NO SMOKING, NO SMOKING, NO SMOKING. I don't say this for the harm it does to the lungs and limiting help with oxygen therapy, I say it for the hazard of burning yourself to death.

I have been on oxygen for about 12 years and during that time I know of 6 deaths in the local Spokane WA area caused by smoking while on oxygen. One little spark can cause your clothing, furniture, hair, oxygen tubing to flame violently. The oxygen will accelerate the fire so fast you can't do anything about it.

Please do your family and yourself a favor and do not smoke while on oxygen.
JR WA Posted - Mar 21 2019 : 10:42:10 AM
What a relief that is, and thank you for looking into it! We caregivers are in a very important position for the COPD sufferer. I've been grateful and impressed how so many people participate here, and love that there are so many ideas on how to approach this convoluted medical system which can be overwhelming and scary at times. Especially in today's world of everything being in such a hurry.
In my family/friends community I can look back on some 60 years of loved ones facing the need to quit nicotine for lung reasons and have now had to experience three of them go down with the ship. It is so hard not to blame them, and run a reasonable balance of compassionate sympathy vs the desire to try to bully them into quitting by insisting, nagging, tearing one's hair out... But I very much think we should keep trying, as individuals and as a community. Tobacco addiction is back on the rise in young people now, so we're off our nice little trend of tobacco reduction. What the heck!?! What are we missing??
The VA being high volume, with a high volume of tobacco use, is in a great position to define and provide a protocol which is most likely to succeed. That's appropriate and doesn't sound so punishing or indifferent.
Thanks.
Dave-OH Posted - Mar 20 2019 : 4:18:57 PM
I talked to the coordinator of the Cincinnati VA Pulmonary Rehab program and he said that unless a smoker is in a smoking cessation program they will not accept them into the program, and that is a national VA position. They have waived it for those who are trying to quit on their own and have a clear path to reduce nicotine use.

He has one smoker, and they are going downhill not progressing in the program. While smoking it is continuing to damage the lungs and it is hard to improve if they continue.
JR WA Posted - Mar 19 2019 : 7:06:43 PM
It took a few days to get call backs from both the Smoking Cessation Program Director and the Pulmonary Rehab Director of the Puget Sound VA here in Washington State after being pretty disturbed upon hearing the VA wouldn't allow smokers or vapers of nicotine in pulmonary rehab... That sounded so wrong! Morally wrong if not medically wrong. COPD and smoking is very often found together. It's great if someone, like my sister, hears the word emphysema and finds the idea of another cigarette cleanly out of her reality. She's lucky it happened that way. But others, like my husband, will NEVER give it up no matter what. Go down with the ship; one of my last little pleasures; but I enjoy it so much, etc etc. These folks smoke because they think they have to in order to have 'quality' of life. I'm convinced they're self treating that which they never figured out how to manage without the drug. Like anxiety, stressful life, etc etc. So what do we do with patients who insist on doing the thing that is making them sick?
We can't kick them to the curb or we'd have to kick everyone to the curb who eats a typical American high fat and high sugar diet and develops diabetes or heart disease. It wouldn't be appropriate for a host of reasons. Thankfully, the Puget Sound VA here in Washington State takes a more balanced view, that also seems more consistent with the Hippocratic Oath physicians take before embarking into the profession of medicine.
The director of Puget Sound VA Pulmonary Rehab reports that they will take all comers referred by a physician whether they smoke or vape or whatever, nicotine. The Smoking Cessation Program works in conjunction with them. To turn away COPD sufferers from Pulmonary Rehab because they use nicotine would do them unnecessary harm. And we already know that replacement nicotine treatment works (sort of) for some nicotine addicted persons.
I don't know what VA Lexington's policies are but I'd plan to push them a bit to explain themselves if they won't accept him in Pulmonary Rehab.
Dave-OH Posted - Mar 11 2019 : 8:44:56 PM
I do not know the details of the VA program, except vaping is not allowed.
JR WA Posted - Mar 11 2019 : 2:05:01 PM
Hello again Cathy, I thought I could add (if I didn't above already) that the smoking thing is a tough obstacle that might be worth your hearing how my husband jumped from gray and breathless to actually functioning better with a change in tobacco delivery. He has nearly a 50 pyh of smoking and was fully ready to go down with the ship except that he couldn't breath without oxygen and still smoke. Period. He tried for a whole 6 hours to not smoke but that wasn't going to work. So he switched to vaping nicotine and now we're at roughly a year or so of that. Getting rid of the tar, dust, and god only knows what else, seems to have at least removed a grip on his breathing function that was awful. Now he's a dedicated vaper and his sats run in the mid to high 90's instead of high 80's to low 90's.
A lot has been studied about nicotine vaping, and the jury is still out over the consequences of long term use (given a whole bunch of delivery compounds that most people wouldn't want to put closer to their bodies than into their car radiators or local science labs). Addiction remains the same - no question about that. But for the late stage COPD suffering persons who don't mind going down with the ship, the question of being able to breath better with a product that doesn't seem to have the airway spasm and mucus producing effects of smoking tobacco could make sense.
My husband didn't like the taste of 'plain' nicotine e-cigarettes, so he switched to menthol product (of which I have seen some news indicating there might be a ban in a year or so but who knows for sure). But there are other flavors too (that the school age kids particularly like and are using to enthusiastically reverse the falling nicotine use trends that we were gratefully enjoying). I'm just saying that although i curse the development of e-cigarettes, I do see and have to share - that for the go-down-with-the-ship nicotine addicted, this might offer them a few more years of increased quality of life.
I bet Dave knows whether or not the VA smoking cessation programs will accept the vapers... ?

Respectfully yours, Janice
Dave-OH Posted - Mar 08 2019 : 4:19:09 PM
One thing, the VA offers smoking cessation. I am sure that the Lexington VA can arrange that for him. A big thing is to stop smoking, using any substitute that works.

They do not like smokers in pulmonary rehab, I know from comments in my group.
tsainta Posted - Mar 08 2019 : 11:49:26 AM
Two red flags jump out at me.

1. Beta Blockers can increase shortness of breath in COPDers. I can't take them for that reason. Beta blocker eye drops for glaucoma slowed me way down, barely functional--and that was much earlier in my disease.

2. None of the small POCs, like the Inogen, output more than 1.1 LPM. I imagine the rep never got around to mentioning that.
Dave-OH Posted - Mar 08 2019 : 11:43:15 AM
I have a POC, it is a Simplygo that can produce continuous flow to 2 liters for when I fly. I needed O2 24x7 when I got out of the hospital a year ago.

If weighs 10 pounds, comes with a cart, a charger and a car charger, and each battery can provide several hours depending on the flow rate. Without some studies no doctor should prescribe a unit. As for accessories, just an extra battery as my unit came with everything else. If I fly more than 4 or 5 hours I would need a third battery.
iPossum Posted - Mar 08 2019 : 03:29:35 AM
Thank you both, very much for the response. His diagnosis came late and was primarily treated for essential hypertension using Beta blockers - was able to control his rate, and pressure that was marginal, and then came the fatigue and dyspnea with increased mucus production. Again, he is in terrible denial and it wasn't until a recent episode of exacerbation that required BiPap and ICU admission x3 days. You never really miss the water until the well runs dry and he is somewhat more receptive to listening to me and seeking help for his condition. Being removed by 2,400 miles makes it another challenge and a recent expensive trip back to see him provided me the opportunity to establish ground truth and call him out on his denial and offer support. He declined a PFT a year ago and at this stage it doesn't make a lot of difference as his clinical signs say the most. Am still very hopefull that he will be receptive if I can show him the benefits of pulmonary rehab and can help steer him towards a program that can recover some of what he lost and improve his current quality of life. Blame it on marketing but he thinks he might benefit from using a POC, like Inogen. I am trying to educate myself about their device, and others. After talking with a rep I am still a little unsure about cost/benefit. No doubt that they offer a needed service, but they are a little misleading about batteries and a fairly heavy attempt to sell additional accessories / warranties. I understand the sieve/scrubber system and they were able to explain the relationship with most health insurances (except the VA) and am still exploring possible alternatives.

Again, thank you both for your sharing / supporting... Scott "iPossum"
Dave-OH Posted - Mar 07 2019 : 11:40:37 PM
I am part of the Cincinnati VA system, and have been part of their Pulmonary Rehab program for my second time since last July. I he see a pulmonologist there, they can make a referral for pulmonary rehab. I do not know is Lexington has a pulmonary rehab program. Most of the people in our program have pulmonary hypertension or IPF, so the focus is a bit different than most.

Cincinnati does refer patients outside of their program for logistics purposes. Our program current does not focus on the breathing issues, but on the physical conditioning. If your father has Medicare, they will pay for a pulmonary rehab program.

Since he is retired Army, he has Tricare for Life if he paid for Medicare Part B. That means he can go anywhere without almost any cost for medical care.
jmrommes Posted - Mar 07 2019 : 5:52:05 PM
Hi, Scott,

I'm not a vet, but I am a COPD advocate and have been monitoring boards, forums and listservs for nearly 20 years; I also have the disease and I use O2 as well. My exposure to the VA system has taught me that some VAs offer great services to people with COPD and some offer very poor services. Most do not offer Pulmonary Rehab, which usually is critical for most of us. That's a program that is designed to help people learn to exercise safely and daily and provides education regarding COPD and how you can manage and control it. That really sounds like something your Dad could use. If the VA doesn't offer the program, talk with them about how you get him into a local program. There should be something available that would work for him.
iPossum Posted - Mar 07 2019 : 01:32:36 AM
Very Good Evening from the West Coast,

I am hoping to learn some information to help me care for my father. He has been diagnosed with COPD/Emphysema two years ago and recently deteriorated and began requiring home oxygen. He had been in terrible denial about his disease (still smoking) and he had a pretty significant decline after starting home oxygen use and the retrictions from not enjoying normal mobility. He uses a concentrator when sitting in his recliner and when he gets up to move around in the house he pulls a portable cylinder then. At resting his SpO2 can be maintained at 93-94% and with simple coaching he can get higher - when he does get up and move around and walks about 20' and his sats drop to as low as 73% and after rest he can recover back to mid 90's after three minutes. He retired ARMY after 20 years of service, about to turn 79 and his only comorbity is hypertension. He gets most of his medical care at the VA in Lexington, Kentucky. I am having difficulty in mobilizing assistance through his physician or preferably through a skilled RRT to help teach him to better manage his COPD and help coaching for pulmonary conditioning. Any assistance would be appreciated - Thank you, Scott "iPossum" Parsley
Calycu Posted - Apr 30 2018 : 10:44:23 PM
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!


jmrommes Posted - Apr 30 2018 : 8:38:00 PM
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
JR WA Posted - Apr 30 2018 : 12:03:42 PM
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!
Calycu Posted - Apr 30 2018 : 07:49:52 AM
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
JR WA Posted - Apr 30 2018 : 01:47:24 AM
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! :-))

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