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Diane545
Member

USA
252 Posts

Posted - Dec 21 2017 :  09:31:10 AM  Show Profile  Reply with Quote
I have emphysema and on 02. I am finding it harder and harder to walk any distance. Since I was diagnosed about 3 yrs ago and put on 02 I have worked hard at following steps to stay active. I went rehab, started eating healthier, joined gym & tried to keep walking. Now I find myself walking less because I just canít breathe. It is getting me down cause I feel like I am getting worse & missing out going places. If there is much walking I just donít go. I have talked to doctor and she said, I am doing what I can and try not be to hard on myself. What I would like to know is what do you do, any suggestions. My son said, we can get wheel chair but that just freaks me out. Guess I donít want give in. Can you share your experience so I donít feel so alone.

tsainta
Contributing Member

USA
1798 Posts

Posted - Dec 21 2017 :  11:39:01 AM  Show Profile  Reply with Quote
How many liters of O2 are you on and have you tried increasing it?

Tony-CA

50% of dealing with COPD is common sense.
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Diane545
Member

USA
252 Posts

Posted - Dec 21 2017 :  4:04:28 PM  Show Profile  Reply with Quote
I am on 2 Lpm. I did see my pulmo today and she wants to do PFT Test again because itís been over 3 years & had a few hospital excasberations since tested. Will see if there is any difference in scores. . Plus she wants me to do a more intense rehab to see how far I can be pushed. She is thinking a few things and one is I might need higher Level 02. Will also be able to see if I am at my max due to lung damage. I am glad cause I told her I want push myself but finding it harder to breathe.
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tsainta
Contributing Member

USA
1798 Posts

Posted - Dec 21 2017 :  4:37:01 PM  Show Profile  Reply with Quote
Why wait for your pulmo to decide on your O2? You live with it every day and no test she gives you will be more valid than your own experience. I'd turn it up in increments, decide what I need from real world experience, and then tell her what I thought I needed and why.

Tony-CA

50% of dealing with COPD is common sense.
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faybees
Member

USA
152 Posts

Posted - Dec 21 2017 :  5:33:20 PM  Show Profile  Reply with Quote
I have to agree with Tony. Do you have an oximeter, that will tell you exactly what is going on when you walk. If your sats drop then turn the o2 up. No amount of intense rehab is going to work if you are on the wrong amount of oxygen. I use a wheelchair, if I am going somewhere that I have to walk a great deal then I use my chair. Why stress yourself out trying to keep up with everyone. You have a progressive disease, it is what it is, do what you can to make it easier on you. I use 2ltrs for sleep and was on 3 for exercise but that 3ltrs is not cutting it anymore. My pulmo trusts me to keep my sats where I am comfortable, for me right now, that is on 4ltrs. Try it.

fay beech
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jmrommes
Contributing Member

1870 Posts

Posted - Dec 21 2017 :  6:05:08 PM  Show Profile  Reply with Quote
Use your oximeter when you're walking. What does it tell you? If your sats are still well above 90 and you're really sob, stop and do pursed lip breathing until you've recovered and your sats are still good. Then, still doing PLB, start walking again, very slowly, continue with the PLB and keep going. As long as your sats are good, you can keep going and you won't do yourself any harm. You'll be really uncomfortable, but you won't do any damage.

If your sats are going down and you're sob, turn your O2 up until you are in a good range and keep going. Keep checking things out so you know things are still good. When you're done, turn the O2 down again.

Then go to your pulmo and tell her about your experience. You're smart, you understand how this works and you can tell her what's going on.

Exercise not only lets me live, it enables me to have a life.
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Diane545
Member

USA
252 Posts

Posted - Dec 21 2017 :  9:01:31 PM  Show Profile  Reply with Quote
Ok I will take my Oximeter when walking to check it. I will do like you suggest and if they drop turn 02 up. I do purse breathing all the time. I stop until I can recover but the longer I walk it gets harder to get breath back. I feel like Iím suffocating. I am not able to do what I have been doing and that scares me. But If it is not my 02 level I will have to face it and do what I need to get around.. I appreciate your feedback, always helps yo hear from those going through it.
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deb-fla
Member

USA
60 Posts

Posted - Dec 21 2017 :  10:34:14 PM  Show Profile  Reply with Quote
I am 4th stage, My Pulmo Dr. said I have 0 air flow in my lungs. With the use oxyo, I keep my rate at 98, but i still get sob when walking,my pulse averages 85 to 125 when I am busy,and I still get extremely sob, she said my oxyo rate dosnt have that much effect on sob. i try to keep my oxo rate at 95\96 by controlling the flow. I notice the higher my activity level, the higher my pulse rate, == a higher chance for sob attacks. so if I am paying attention I watch the flow, you really just have to play with the numbers, we are all different. And keep the faith. My first Private Pulmo said i would be lucky to make it a year without life support,{I have a DNR in place, so that is out}. So after one year, one cold, 3 sinus infections and on throat infection, I AM STILL HERE!! This year the Hospice prediction is on year, then start counting by 3 [months]. All I have to say is see ya then.

deborah brantley
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deb-fla
Member

USA
60 Posts

Posted - Dec 21 2017 :  10:46:01 PM  Show Profile  Reply with Quote
Diane I do have a three wheeler electric wheel chair. I call her my little red wagon, I use her for shopping. great for keeping up with the girls. i still walk at home.

deborah brantley
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Diane545
Member

USA
252 Posts

Posted - Dec 21 2017 :  11:11:20 PM  Show Profile  Reply with Quote
Thanks Deborah. I too find my heart rate jumps With active. Sometimes my heart rate will be 115, 02 @ 93 but I canít breathe. Once I sit and do purse lip breathing I will get my breath back. Sounds like something similar you go through. Sometimes it gets so confusing. I am going to look into a walker with seat and see if that can take me further. I still want walk why I can but need to sit to catch my breath.
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tsainta
Contributing Member

USA
1798 Posts

Posted - Dec 22 2017 :  01:18:41 AM  Show Profile  Reply with Quote
Diane, I had similar symptoms. I finally browbeat a cardiologist into looking at my arteries around my heart. A major artery was more than 90% blocked. With two stents in, I feel better and have more energy than I have had in several years. A pulmo at a major teaching hospital says blocked arteries is one of the first places he looks in people with advanced COPD and rapidly declining mobility.

Tony-CA

50% of dealing with COPD is common sense.
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Diane545
Member

USA
252 Posts

Posted - Dec 22 2017 :  08:27:49 AM  Show Profile  Reply with Quote
Wow good to know Tony. Weíre they able to find that by ultrasound or did you have a Angioplasty? My husband was scheduled for a minor surgery and upon completing physical they found out he had blocked artery. He had a stress test that he dramatically failed then Angioplasty. He ended up getting double bypass surgery. I had a work up that included a ultrasound and stress test which I used my oxygen. I wonder if that would give true result.
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tsainta
Contributing Member

USA
1798 Posts

Posted - Dec 22 2017 :  2:18:50 PM  Show Profile  Reply with Quote
Diane, they found it through a CT scan with contrast, but that's the easy part. I had to change cardiologists to get anything done.

I didn't have any of the classic symptoms, but my thought was that since I was not a candidate for open heart surgery, if I waited for the classic symptoms, I'd be done--just waiting for the heart attack and death. Yet, I'm 78 years old and there was little doubt that there had to be some, at least moderate, calcification somewhere in my arteries. My old cardiologist wouldn't even discuss the idea of doing any diagnostics, so I changed docs. My new cardio agreed with my logic and did whatever he had to do with the paperwork to ensure Medicare would cover the procedure.

Tony-CA

50% of dealing with COPD is common sense.
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Diane545
Member

USA
252 Posts

Posted - Dec 22 2017 :  3:24:56 PM  Show Profile  Reply with Quote
Good for you Tony speaking up. I have high cholesterol & high blood pressure. Heart attacks run in my family dad, Brother, grandma. Will definitely look into it, especially cause I know something is causing my sob.
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tsainta
Contributing Member

USA
1798 Posts

Posted - Dec 22 2017 :  7:56:48 PM  Show Profile  Reply with Quote
I guarantee you, I would not be around today if I wasn't in the habit of speaking up and had not spoken up on at least a couple of other occasions.

Tony-CA

50% of dealing with COPD is common sense.
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Jan-KS
Member

USA
84 Posts

Posted - Dec 30 2017 :  01:21:32 AM  Show Profile  Reply with Quote
Isn't this more likely a case of Air Hunger? (although I would explore the cardiac possibility as well just to be safe). I am Stage 4 and have terrible air hunger all the time, often even at rest, but my sats say I'm just fine. I read on another forum years ago that Air Hunger is very different than desaturation and that your O2 levels would likely have to be in the 60-70% range before desaturation caused you to feel out of breath- anything above that is "just" air hunger. Anybody know the physiological differences between air hunger and actual desaturization? Is it just anxiety induced or does it have a physical cause? I know some Dr's that don't take it seriously but for me that never-ending desire to take a deep breath is the worst part of my COPD.

3 Years ago pulmonologist started treating me with Xanax because I was having horrible panic attacks whenever I would feel out of breath (which means I had several a day). This also lead to frequent hospitalizations that were, in retrospect probably sometimes due a bad panic attack and not an exacerbation. Hospitals nearly always admitted me regardless - because I am Stage 4) Xanax and some visualization exercises now keep me from most panic attacks but the air hunger has continued to get worse so I am now on Morphine (which I had hoped to avoid) - and even it is starting to lose it's effectiveness. There are days where the air hunger is so bad I just want to be put out of my misery - other days I cope with it amazingly well and get all sorts of things done. I am, however, concerned that I will need increasing doses of morphine as time goes on - to the point where it won't help when I am actually dying.

Like Deb-Fla - my resting heart rate is high and the air hunger gets worse the higher my heart rate is.ate is 99 but with little effort it goes to 125 or higher, and the air hunger gets worse and worse. (all my heart tests show I luckily have a very healthy heart) but it feels to me that the heart is somehow involved in my air hunger. Anybody know more about air hunger?

Jan C
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jmrommes
Contributing Member

1870 Posts

Posted - Dec 30 2017 :  10:08:49 AM  Show Profile  Reply with Quote
If you google "air hunger" you'll find all sorts of references to dyspnea and to sites dealing with panic and anxiety. If you are really SOB and your sats are good, pursed lip breathing should help, because what's happened is that the CO2 has built up and you're not blowing enough of it off; PLB helps you blow off some of the CO2. If your sats are dropping, then O2 should help.


Exercise not only lets me live, it enables me to have a life.
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Jan-KS
Member

USA
84 Posts

Posted - Dec 31 2017 :  12:48:02 AM  Show Profile  Reply with Quote
I feel like an expert on pursed lip breathing, but lately it seems to take nearly 30 minutes of doing pursed lip breathing to feel well enough to continue with whatever task I started. And I forgot about the issue with CO2 - About 3 yrs ago I was hospitalized for 2 weeks, and the CO2 level in my blood was VERY High so I was approved for a Trilogy at home - which is like a bipap with a ventilator. The science of how it lowers your blood CO2 level is beyond me but I used it religiously for a while and my CO2 levels got back to normal. My husband liked it because he knew I was still alive as long as the Trilogy didn't alarm! Of course I felt better and quit using it regularly because the mask was VERY hard to remove and I'd wake up in a panic and not be able to get it off (or put it on for that matter) without assistance from my husband.

Finally in the last year I've found a mask that 1. doesn't leak 2. Is easy for me to put on and take off without assistance and 3. Is fairly comfortable. Bad thing is that it leaves indentations all over my face that can take hours to go away after I remove it and it's also pretty hard to find a comfortable sleeping position with the mask on that doesn't make be panic. (I'm sure mask issues are the primary reason for non-compliance with cpap, bipap and the Trilogy.) But I am thinking that since I'm having such an air hunger problem again that my CO2 levels may be high again and I need to start using the Trilogy - which I dread.

But my question actually is - can a high CO2 level in the blood cause a "false" reading on an oximeter? In other words, doesn't the oximeter just measure how many blood cells are bound to O2 - but how does an oximeter know the difference between whether the blood cell is bound to O2 or CO2? So could I be sitting here with it showing a 98% saturation rate but because of the high CO2 I'm really NOT getting enough oxygen?

Jan C
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jmrommes
Contributing Member

1870 Posts

Posted - Dec 31 2017 :  10:39:17 AM  Show Profile  Reply with Quote
This is a bit beyond my pay grade, but I'll give you my best understanding. Check with your doc or with an RT for a good explanation of what happens in the lungs as you breathe. I was hoping to send you to a web site where they had really good videos of how the lungs work, especially in regard to the space that's reserved in the lungs for extra work and how that affects us, but it's apparently been taken down (grrrr!!). You might check out utube to see if any of their videos show what happens.

When we breathe, O2 goes in and CO2 goes out in normal people. As we breathe faster and faster, we take in more O2 and exhale not all the CO2 (normal people, too). The CO2 begins to fill the space that is normally reserved for more O2 under exertion, and when it gets too full, we get really sob. Your oximeter shows that you have sufficient O2 because you do, but you're sob because of the limited space available for it. That's why we tell you that you can work through the sob and not do yourself any harm because your O2 sats are still good.

This is in contrast to someone like me, for instance, whose sats drop the harder I work, and who gets sob because I really don't have enough O2. Adding O2 is critical in this case, because if I continue to work and my sats go low enough, I would probably pass out. I probably wouldn't die unless my lungs had been so insulted by my efforts that they decline to recover recover.

I think you're right; it's time to get the trilogy back out and use it. I'm sorry, because having used a c-pap for several years, I understand about the masks, leakage and face dents. I decided I preferred breathing well. There are probably new masks available since you stopped using the trilogy; you might want to check with your supplier.

Exercise not only lets me live, it enables me to have a life.
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Roadrunne98
Member

USA
230 Posts

Posted - Dec 31 2017 :  5:04:36 PM  Show Profile  Reply with Quote
i am severe copd. I#65039; get sob standing too long, walking into a restaurant, going to and from the bathroom. I#65039; got the rolley I#65039; call it ( the one with the seat). Everyone should have one. I#65039; broke down nd told my husband to put that in the car when I#65039; went for my haircut instead of hanging on his arm. I#65039; still have to sit and get my breath after he brings me in. This time I#65039; took the walker. I#65039; felt like the queen. No one looked and stared, and I#65039; felt great. In the kitchen I#65039; sit by the stove and even stir certain dishes. Back and forth now I#65039; always use it. Try it. You will love it. The box you see means the letter H _. J. The letter between the two letters. I#65039; donít know why my iPad is doing it. Happy new year to all.
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Diane545
Member

USA
252 Posts

Posted - Jan 01 2018 :  1:24:52 PM  Show Profile  Reply with Quote
Thanks, my stats drop to when I am up moving. I use my 02 and it helps if I am not exerting to much. But Iím having problem with distance. I can walk about block with 02 but then feel out breath. If I can find place sit I will do purse breathing and that helps. I am seriously thinking of Walker with seat for outings that require to much walking. I do agree that anxiety plays a part cause sometimes I wonder if I will catch my breath & be able to breathe in. I still get confused with CO2 retention or if itís lack 02. I think the progression of this disease scares me more. My mom died at 71 and I watched her go down hill. That is why I am fighting and not giving in. I want to stay mobile where she kind of gave up. It really helps me hearing your stories and how your handling your disease.
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Jan-KS
Member

USA
84 Posts

Posted - Jan 02 2018 :  12:14:22 AM  Show Profile  Reply with Quote
Good attitude to have Diane - I thing most of what you are fighting (and without an oximeter reading or blood study it's impossible to know for sure) is too much CO2 leading to air hunger. Imagine your lungs starting working with 100% capacity, when a normal person walks at a comfortable rate he/she will still have normal capacity - whatever air they used while walking gets quickly replaced so they are NOT out of breath. Imagine a person with COPD that starts off at 50% and walks at the same normal rate, but each step really takes 55% of their capacity, so the next step they only have 45% of their capacity and the next step 40% - they quickly work down to zero capacity and they become very out of breath. It is because people with COPD can usually breath O2 in fairly well but they cannot breath OUT the CO2 the lungs left behind (air trapping)- so some % of their blood vessels are tied to CO2 rather than O2 and with further exertion they have a greater and greater problem getting rid of CO2, which means - fewer blood cells are free to bind to O2. If you stop and do pursed lip breathing you will eventually get rid of the excess of CO2 and those red blood cells will start to be bound to more and more O2 molecules and you'll finely catch your breath - but as you get sicker and sicker (we are both "end stage" I believe) we not only get out of breath faster, we have more and more difficulty getting rid of CO2. Now my question has always been is why my pulse oximeter shows excellent saturation but I am completely out of breath and feel like I'm suffocating (ie., air hunger) - my question is whether a pulse oximeter can tell the difference between a red blood cell bound to oxygen versus a red blood cell bound to CO2. If it can't tell the difference it may show 100% saturation, but we are out of breath because half our red blood cells are bound to CO2 instead of O2? Shouldn't they have an instrument that can tell you the percentage of USEFUL (ie.,bound to O2) red blood cells we have versus the percentage that our bodies can't use because they are still attached to CO2?

I guess the reason I make such a big deal out of this is because I've probably been seen by 7 or 8 pulmonologists over the years and nearly all of but one of them brushed off how serious of an impact air hunger has on me both physically and psychologically - its almost like they treat it like we're just overly anxious people that need a tranquilizer rather than admit to the fact that air hunger IS a REAL sign of how debilitated we really are. Runners and other athletes probably have a similar problem but they are so used to being out of breath they don't worry about it - and they also very quickly recover from being out of breath - unlike many of us us that may take a LONG time to catch our breath - or worse yet - we PANIC and start breathing faster and faster - which is actually making things worse - because each time we exhale we retain a little more CO2 - so breathing becomes less and less effective. Our heart starts racing (which can make you panic more), some people urinate, some people (like myself) get an urge to run or fight off the nurses or paramedics trying to get me more Oxygen (fight or flight syndrome) . Eventually we could hyperventilate so bad we pass out and if our bodies are strong enough to respond they eventually get rid of all that excess CO2 and we breathe normally again, if out bodies can't recover quickly enough than we're dead or intubated and put on a respirator. In that situation we are really no different than a person whose lungs cannot capture O2 to begin with and show low numbers on their Oximeter when they are out of breath. Even my husband (like those bad pulmonologists I've met) sometimes says - "oh you're just having a panic attack, take another Xanex or some morphine and you'll get over it" - like it's no big deal or like I'm not really sick I just think I'm sick. I guess I would like some acknowledgment that air hunger is a REAL disease process - it's not "all in our heads" especially as our disease progresses. I think most "normal" people would also panic if they were suffocating to death - it would be abnormal if they didn't. I used to have a panic attack nearly every time I got out of breath. Since then I have learned how to slow my breathing down and focus on what I call "quality breathing" or pursed lip breathing - I also try to start doing something like math problems in my head to divert my brain's attention from what it's body is feeling. Xanax, morphine and other drugs also help and some people just take xanex or morphine on a regular basis to try to avoid air hunger at all costs and they become terribly addicted - the problem with that is that your body starts requiring more and more of the drug as time goes on until you reach a dose that could be fatal. Most hospice patients are placed on heavy doses of morphine to relax those breathing muscles and reduce the panic, pain and fear we get as we are dying - in fact I strongly suspect that many hospice patients actually do die from drug overdoses rather than from the disease itself - but who can blame them for wanting their last days on earth to be as comfortable as possible and who can blame their caretakers for not wanting them to suffer.

Jan C
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Diane545
Member

USA
252 Posts

Posted - Jan 02 2018 :  09:59:15 AM  Show Profile  Reply with Quote
Wow Jan this sounds like my deceased momís story and mine. I to have hard time trying explain what you call air hunger. I ask Dr if this is normal for me or what is going on & I never get straight answer. Some suggest different meds, more rehab, more 02, etc. It is frustrating cause I would rather hear a true explaination like you have given instead of all the ďcould beísĒ. I donít think they understand the difference of being sob and suffocating. In the beginning mine was more sob and I could handle that but now I react just like you explained. Breathing faster, trying to get air and panic when it doesnít come fast enough. Now Iím more afraid to venture out for long periods fearing I wonít have the air or endurance to make it. I watched my mom go into full blown attacs where she could not catch her breath and they had incubate her. The breathing therapists and nurses would tell her to try and relax. I told her pulmo how frustrating that is to hear and he said, next time you hear that ďtell them let me put a rope around your neck, cut off your airway and see how well you can relax. Of course you are going panicĒ. I finally felt like my mom was justified in not overreacting & was really suffering. She wanted to take breathing tube out and had made it clear she did not want life support. She originally was admitted for what we thought was just another excasberation and went home on hospice. We were shocked not knowing she was in this bad shape. She died about 3 weeks later. I agree that she probably died from drugs but it was the most peaceful way to go. She no longer had to panic or beg for someone to help her. I have made it clear to my family this is what I want when the time comes (hoping that is long way off). Thanks for your explaination, it makes a lot of sense. I think this disease needs more attention & studies as to the symptoms of the progression, especially considering it is Third leading cause death.
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tsainta
Contributing Member

USA
1798 Posts

Posted - Jan 02 2018 :  10:57:21 AM  Show Profile  Reply with Quote
Congratulations ladies. One of the best discussions I've seen here in years. I, certainly, can identify with all of the problems and frustrations.

Tony-CA

50% of dealing with COPD is common sense.
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SteveinMechanicsburg
Member

104 Posts

Posted - Jan 02 2018 :  12:05:46 PM  Show Profile  Reply with Quote
I saw this article a long time ago and I recollected that it mentioned air-hunger. It is not a pleasant article because the poor woman chose physician-assisted suicide. After oral cancer, the COPD was too much, I guess.

http://www.cbc.ca/radio/thecurrent/the-current-for-january-17-2017-1.3937973/for-me-every-breath-is-work-why-noreen-campbell-chose-assisted-dying-1.3937994?cmp=rss
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Jan-KS
Member

USA
84 Posts

Posted - Jan 03 2018 :  02:08:37 AM  Show Profile  Reply with Quote
Great article, thanks for sharing. Personally I'm nearing that point myself but am not in a "right to die" state. If I failed to wake up tomorrow I might be better off (I'm not very religious and have no idea if there is an afterlife in heaven or elsewhere and it's difficult to imagine "not existing"). I'm still not even a DNR because I guess I do hold out some hope that there will be some new treatment (other than transplant) that will allow me to live comfortably without struggling to breathe all the time. I also want to stay alive as long as I can care for myself for the sake of my family.

This is a long story but it does make a few points. Diane - my mother died 2 yrs ago from COPD (or probably a morphine overdose). She had throat cancer about 15 yrs prior, recovered but lost her vocal cords and ability to speak without a buzzer. They assumed she had COPD due to all the symptoms and the fact that she had been a 40 yr- 2 pack a day smoker but they couldn't test her because she didn't breathe through her mouth but through her trachea. She was the type of person that had panic attacks BEFORE she had COPD so the COPD made life a living hell for her. I still feel so guilty when she would call me and beg me to come over and sit with her because she was scared struggling to breathe - most often I would have to say "no" and just talk her through it on the phone because I was so ill myself and the mold and dirt/dust in her apartment triggered my asthma/copd and panic. For 10 yrs I cared for her by getting her groceries, taking her to dr's appts and taking her pets to the vet etc., I would have to walk several garbage bags each week from her apartment to the dumpster about 1/2 block away - which ALWAYS caused me to have severe air hunger and near panic. I did this while I was still working full-time and had "only" Stage 3 COPD. It was hard work and I had no support from my then-selfish family - it was easier for them to be mad at my mother than it was to admit she and I BOTH needed help and actually do anything for either one of us. (Actually, towards the last year when I was in Stage 4 COPD and was being frequently hospitalized, both my husband and daughter were forced to care for my mother instead of me and I think it gave them a little more compassion for both of us).

It was my mother that gave me my first Xanax (after one of my garbage runs) and I am still on it today. I would have her over to my home for 6-8 hours a week but caring for her, her O2, walker, constant falls etc., was physically and emotionally draining for me. (That's when my husband and my daughter started to hate her for "putting me through this" - without bothering to HELP me get through it.) I just TRIED to help her as much as possible with her COPD but she had no way to do pursed lip breathing and would just have to suffer through an attack. She always fired all home health care nurses after a week or two because they "bothered her sleeping" knowing those home health care workers took a big load off of me. She lost her meals on wheels because she refused to get up and open her door and she wouldn't give them a key to her apartment - so I now needed to check on her daily - at least by phone and go to her apartment if/when she didn't answer or when she let the battery run down or just "turned it off". She only wanted me to care for her - something I was barely able to do. I know that she felt guilty about what she was doing to me but I think her dementia gave her the idea that I "owed it to her".

She refused morphine because she had always had a very adverse effect she called "difficulty breathing" when it was administered to her in the past. She had copious amounts of mucus causing constant mucus plugs in her lungs because of her tracheotomy = she actually coded once in her hospital bed due to a very visible mucous plug covering her airway. Physicians, PA's, Nurses just stood their waiting for a pulmonologist to respond when I tried to get some tweezers and tissue and pull that horrible gunk out of her throat but they wouldn't let me do it. Luckily the pulmonologist showed up and did exactly what I was going to do and also squirted some saline directly into her lungs (which causes VIOLENT coughing) - and she got rid of a lot more mucus. At that time she refused to give me power of attorney and her living will basically said for them to try to resuscitate her at all costs. I didn't understand this - to me her life was a horror but to her something made her still want to live or she was too terrified to die. When she finally was debilitated enough (and had some dementia) she finally agreed to go to a nursing home and actually ended up in several nursing homes - each passing her on to a different one because her medical needs were too advanced and using the excuse that "she refused to participate in Rehabilitation exercises" which is how they got medicare to pay for the first 100 days of her nursing home stay.

Each nursing facility was smaller, smellier, dirtier and the food was worse. Most of the staff were quite kind but had no idea how to care for all her disabilities. In fact, even though she wasn't incontinent she was forced to use diapers because it was easier on the staff than trying to get her out of bed and transported to the bathroom. This really humiliated her. I remember one day she looked up at me in horrible anger and said "I pooped in my pants today" because I helped convince her to go to a nursing home. Unknown to me at that time SOME doctor employed by the nursing homes started giving her morphine in larger and larger doses as she became more tolerant to it. When I would go see her she'd be nearly impossible to wake up. The staff said she was showing signs that her organs were shutting down (I guess your skin starts changing color - starting at your legs and going up your body) - at the time it all fit together - she was dying, was nearly comatose and I had power of attorney. So I switched her living will to make her a DNR = which is something I know she never wanted but with the comatose living situation my only conclusion was that she was dying a slow gruesome death. One day during a "bed bath" her caretakers turned her back from being on her side and found that she had stopped breathing and did not resusitate on my orders. I had just killed my mother.

So what's the point? I think there are a lot of them = for one, my observations is that the elderly are not given good COPD care in hospitals and nursing homes - especially if they have multiple disabilities. I never once saw a breathing treatment administered or met any Respiratory Therapists - my own experience in hospitals was that you had to ASK for a breathing treatment to actually get one 2. Don't trust a hospital or care home to tell you about any medication changes. My mother was nearly comatose because she always had been oversensitive to morphine which they were administering without my knowledge as part of a standard protocol of care. (even though her chart actually stated she was allergic to morphine) but from my perspective she was very near to dying - instead of having a morphine overdose. They said her organs were shutting down as evidenced by the changes in color in her body which was barely noticeable but it was happening. Staff also told me that it's pretty horrifying to watch a person (especially the elderly) to be resuscitated and it's very hard on their body (broken ribs etc) In the end I killed my own mother by changing her living will to a DNR because that's what I (and all the staff) thought was best for her and even though I knew it wasn't her wish. Now why she wanted to continue to live I have no idea - and that probably altered my thinking - I knew if it was me in that hospital bed I'd be begging for somebody to put me out of my misery - but I was not my mother. So please if you have a living will that says you want to be resuscitated - think through that decision and communicate in the will or directly to your children under what circumstances that should be changed to a DNR. I'll never know with my mother - did I kill her or did I do her a favor? Finally, if you are a caregiver to somebody with COPD please remember it is VERY FRIGHTENING to not be able to breathe and don't try to convince yourself that they are not suffering terribly. Staff at the hospital and nursing homes seemed to put her suffering on the backburner while they fussed with humidified air and O2 hoses and equipment and pretended they couldn't understand her speech. Part of it is that there are so MANY seriously ill people in nursing homes - all sick enough to belong in a hospital if they were younger - but because they are old - they are just given basic care because all the staff know they are going to die and don't want to get too emotionally attached or invest in too much money or effort. Its a sad situation - so think carefully about HOW you want to die and communicate clearly. I don't think it's fair that I have to feel like I killed my mother for the rest of my life. I wonder if I should have sued the Doctor that administered the morphine but since it would be a huge amount of work to prove that they knowingly gave her something they knowingly knew she was hyper-sensitive to - and in the end, she'd still be dead and some attorney would get most of the money anyway or worse yet - I'd have to find some way to pay the legal fees. So I just let it slide. At the very least I should have confronted the Doctor about it as soon as I saw the paperwork after her death and discovered what may have really happened - that I will always feel guilty about.

Jan C
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Diane545
Member

USA
252 Posts

Posted - Jan 03 2018 :  08:57:27 AM  Show Profile  Reply with Quote
Thank you Steve for article, hope everyone will take time to watch. This is what I l8me about hospice, they will give you pretty much the drugs you need to make you comfortable during your end of life process. No one should have to die feeling suffocated or like 5heor drowning.
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Diane545
Member

USA
252 Posts

Posted - Jan 03 2018 :  09:25:19 AM  Show Profile  Reply with Quote
Jan, at some point I feel we are all here on borrowed time. I do believe God calls us home when the time is right. I have lost my mom, dad, and two brothers. I feel possibly two could have been saved with better care from the doctors but then I wonder what kind of quality of life they would have had. They all reached a point where their quality of life had diminished and in great pain. My husband mother is 96 and tells me everyday she wants die. She was a very active person up until couple years ago. She fell and hasnít really recovered. Now she says every bone in her body hurts, no energy & feels sick most of the time. She is stuck sitting in a chair all day until itís bedtime. I agree it is no life for her. I have a DNR set up with my family. I have seen to much suffering and families having to make the emotional decision like you did. I hope you will let go of the guilt and know your mom was suffering. Like my family who has gone before me, she is in a better place. Now is the time to bring back the happier memories, that is what I do. Hugs
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faybees
Member

USA
152 Posts

Posted - Jan 04 2018 :  08:32:23 AM  Show Profile  Reply with Quote
Something like this happened to my father too. He had COPD and was on oxygen. He had moved into a sheltered apartment, living on his own but with meals on wheels and nursing staff coming in twice a day. He had fallen a few years ago and broke his leg. He lay on the floor for hours before anyone found him and it never did heal again properly. Then he fell again and did the same thing. They took him into hospital. He knew it was his time. He refuse all drugs and even his oxygen. They asked him if he knew what would happen if they did that and he agreed he did and was ready. He died that same day. I spoke to him on the phone in Scoltand before he passed. He did it the way he wanted to. I just hope I have the wherewithal to take care of myself when the time comes. I have been in a rehab situation where there were some desperately ill people who should really have been in hospital. The staff do not seem to know how to care for such ill people and I had words with some of them who were attending to my room mate because of their shoddy treatment of her. Fortuneately I was on the mend and able to take care of myself but if that is anything to go by at end of life type care then I want nothing to do with it.
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Jan-KS
Member

USA
84 Posts

Posted - Jan 04 2018 :  11:42:41 AM  Show Profile  Reply with Quote
I'm afraid this conversation has strayed from the original post- sorry I contributed to that!

I think I will always feel like I killed my mother by not being more assertive with the nursing home doctor (who I never met) and not suspecting they were OD'ing her on morphine. The morphine and her constant semi-conscious existence robbed us both of time to be together and to discuss how she now felt about changing her living will to a DNR - they overmedicated her to the point where she appeared to be dying (in my opinion) - she died angry with me for putting her in these horrible nursing homes. While I know I was out of options (I couldn't care of her any longer and she very stubbornly insisted that I try) I still wish I had pushed myself a little harder to keep her apartment cleaner and gotten her better health care (her PCP was a jerk but she didn't want to change Dr's). In hindsight I think her PCP and the nursing home staff and doctor just wanted her to die because she required so much care (not that she received it) - on the other hand SHE wanted to stay alive at all costs - she must have felt she still had some quality of life or was terribly afraid of dying and not able to communicate that to me because of the high morphine doses. She was demanding, stubborn and difficult but she was my best friend and I will always feel that I could have done a better job.

This is why my living will still has no DNR, I want my family to make sure there is no hope or that I'm not suffering terribly - I hope to be able to make that decision for myself rather than force them to make it for me like I had to do with my mother. I still need to sit down with my husband and daughter and have that conversation but right now they get too upset when I bring it up. I do feel like I suffer a lot from this disease and often hate my life, but my daughter is getting married this year, will likely have a baby in the next few years. I want to be here for that! My husband desperately needs me (he's now had 8 heart attacks but sill waits on me hand and foot - which seems to keep HIM going). I have an elderly dog that has diabetes and low thyroid that I am completely devoted to - there isn't anybody I know that would provide her with the quality of care that I do - so I cannot leave her.

But I do encourage everybody with stage 3 or 4 COPD to first set up a living will and durable power of attorney and second to try to have that discussion with your family about when to exercise that POA and end your suffering. Make your desires very specifically known so they won't feel the kind of guilt that I did. I'm not a religious person and for all I know my mother is actually happy with my decision for her and is in a better place (there better be dogs in heaven too - or I'm not going). I know my mother loved me more than I can imagine and would forgive me even though I can't forgive myself. Even though she was very difficult to deal with sometimes and there were times I actually wished she would quietly pass away in her sleep so I could finally have "a life" - I still miss my best friend. It was also a wake up call to me to NOT put my family in a similar position but be quite clear about my desires. Right now, as miserable as many days are, I DO still have some quality of life and a lot to live for - so I'm not yet ready for a DNR. I'm also working to improve my health - I've lost a lot of weight (due to intestinal problems from the morphine, not because of a diet) and the weight loss has taken such a load off of my lungs and heart. For financial reasons we can no longer afford a housekeeper to come in every couple of weeks so I have the entire responsibility of keeping my large house clean (my husband refuses to downsize plus we probably owe more than it would sell for). All these events have actually made me a STRONGER person and most certainly a healthier one. I was not hospitalized once for COPD in 2017 - unlike previous years where I was in and out every couple of months - so I know something is improving even if my lungs are still in horrible shape and I at times, feel pretty discouraged.

So think long and hard about what you want in your living will - COPD causes depression in most people, and make sure your depression is not the only thing guiding your decision. Be realistic that we are on very borrowed time and that our health status could change dramatically with the next exaccerbation. Be comfortable in going back to that living will and change it to a DNR if your health changes. Lose weight and stay as active as possible (as miserable as that can be sometimes). You may be happily surprised that you start worrying about OTHER things in your life and your COPD doesn't define you any more. Be aware of your limitations and don't be afraid to ask/insist on help - especially from your doctor and family.

Jan C
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KW-TN
Rookie

USA
1 Posts

Posted - Jan 17 2018 :  11:30:16 AM  Show Profile  Reply with Quote
Thanks for this post, Deborah. This may explain what is going on with my mother, who is end-stage COPD. She can barely get to the bathroom and back wearing oxygen. Oximeter shows a drop to around 88 and going right back to mid 90's. But, her pulse rate goes really high, even with medication and oxygen. I'll ask her dr. about this. We recognize that she can only get to kitchen and bathroom, so she can't do much. But, we want to keep her doing all she can. She values her independence, so we put things in place to make that happen as much as possible.
quote:
Originally posted by deb-fla

I am 4th stage, My Pulmo Dr. said I have 0 air flow in my lungs. With the use oxyo, I keep my rate at 98, but i still get sob when walking,my pulse averages 85 to 125 when I am busy,and I still get extremely sob, she said my oxyo rate dosnt have that much effect on sob. i try to keep my oxo rate at 95\96 by controlling the flow. I notice the higher my activity level, the higher my pulse rate, == a higher chance for sob attacks. so if I am paying attention I watch the flow, you really just have to play with the numbers, we are all different. And keep the faith. My first Private Pulmo said i would be lucky to make it a year without life support,{I have a DNR in place, so that is out}. So after one year, one cold, 3 sinus infections and on throat infection, I AM STILL HERE!! This year the Hospice prediction is on year, then start counting by 3 [months]. All I have to say is see ya then.


Best, KW
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