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 Standing is hard to do
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Roadrunne98
Member

USA
199 Posts

Posted - Aug 03 2017 :  12:46:56 PM  Show Profile  Reply with Quote
Does anyone find it hard making their supper for the family or themselves just going back and forth in the kitchen, walking to the pantry, back to the sink, back to the re fridge, standing at the stove stirring something. I have to take a break and sit while doing all of this. I am trying to think of a way to do more in the morning thinking I have more stamina but I think it's about the same. I am even getting sob back and forth across the house lately. I take breo and the nebulizer when needed. Is there any next step for getting less sob or is this how it is when your in stage 4? I would think there would be more help for sob.

gms
Member

USA
76 Posts

Posted - Aug 03 2017 :  4:07:37 PM  Show Profile  Reply with Quote
I have good and bad days. During the good days it's still a matter of sitting frequently and remembering to take it slow... but it's those bad days that are killer. One of the things I've done, especially in the kitchen was to buy a rolling chair that sits higher then a normal desk style. One made more for drafting tables or breakfast bars/counters. It's adjustable, like about 10" or so and it really makes it nice for working at the stove or cutting/chopping and various other kitchen chores. On bad days, I even use it for washing dishes, doing laundry, folding clothes. I like it because it sits high so I don't need to expend any additional energy getting up or down like I would with a regular chair. On humid days when I'm going out shopping or to run errands I'll roll it to the front or side door so I can catch my breath upon entering the house. I've also found that it's easier to breathe and catch my breath when I'm in more of an upright position.

Another item I picked up was a rolling cart. Kind of like a serving cart but with wheels large enough so it rolls easily on carpeting. It's got a good handle bar and two shelves which makes it great for taking groceries from the entry to the kitchen. The top is large enough that I can fold clothes on it and I use it to move my laundry baskets around.

You should of course talk to your doctor about what's going on and see if maybe a change in your drugs might help.

Edited by - gms on Aug 03 2017 4:10:38 PM
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jmrommes
Contributing Member

1685 Posts

Posted - Aug 03 2017 :  6:59:55 PM  Show Profile  Reply with Quote
You aren't taking a LAMA at all; I would talk to your doc about the possibility of adding Spiriva or something else in that class of med to your regimen.

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

USA
36 Posts

Posted - Aug 03 2017 :  10:26:25 PM  Show Profile  Reply with Quote
roadrunner98, I have the same problem I now do as much as i can sitting at the table. I take many breaks.
I like gms ideal for the rolling chair. Live in a stilt house, laundry is downstairs, I am working on a cart, we have a 1300lb cargo lift,that sure comes in handy. for me I have found the best way to overcome sob is purse lip breathing,gotta get the stale air out. I wish I could excersise, Iam end stag on hospice, the Nurse says dont worry about that now.

deborah brantley
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Roadrunne98
Member

USA
199 Posts

Posted - Aug 04 2017 :  11:44:39 AM  Show Profile  Reply with Quote
What is a LAMA? Isn't the nebulizer equivalent to Spireva.? I do feel I am not taking the right things to help me. Even the Breo sometimes I wonder. I don't think it helped me any better than the Advair 250/50 that I was on for yrs. the only better part is that advair was twice a day. Breo is once.
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jmrommes
Contributing Member

1685 Posts

Posted - Aug 04 2017 :  1:24:36 PM  Show Profile  Reply with Quote
The Breo is in the same class of med as Advair, so they should be pretty equivalent, although some of us react better to one combination than another. Advair and Breo both are a combo of a long acting bronchodilator (LABA) and an inhaled steroid (ICS).

A LAMA is a long acting anticholinergic like Spiriva. There are also Tudorza, Seebri and Incruse; all anticholinergenics. I'm not aware that there is a nebulized version, though there may be: you'd be looking for tiotropium or ipratropium.

There are a number of different meds that can be nebulized, so you need to know WHAT the med is that you're nebulizing. Most of the time it's albuterol or a derivative.

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

USA
199 Posts

Posted - Aug 05 2017 :  08:34:25 AM  Show Profile  Reply with Quote
I can't believe it. I usually took in my nebulizer the albuterol and the ipratropium bromide. But this pulmonologist told me to stop the ipratropium bromide and only take the albuterol. I think he said he thought maybe it created phlegm that I couldn't bring up. I have some left in the box I will do the both next and see if I see a difference.
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Roadrunne98
Member

USA
199 Posts

Posted - Aug 05 2017 :  09:14:46 AM  Show Profile  Reply with Quote
I just read that anticholinergenics reduce the amt. of mucous produced in the lung. Why in the world would he stop that one saying he thought it might be making me produce too much mucous. I didn't go back to him because he didn't seem caring enough. I think I will start it back up again with both and see if I feel a deeper breathing.
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jmrommes
Contributing Member

1685 Posts

Posted - Aug 05 2017 :  09:22:44 AM  Show Profile  Reply with Quote
It sounds like you need a new pulmonologist. in order for Ipratropium to be effective, you generally have to do it four times a day in the nebulizer. Spiriva is once a day, either in the dry powder form or the new respimat form. If you are having a lot of mucous, you should talk with your doc about daliresp or azithromycin three times a week. Both are anti-inflammatories and have been clinically studied to determine their efficacy. Both work to reduce mucous production and therefore exacerbations. You deserve a doc who pays attention to you and who is pro-active.

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

USA
199 Posts

Posted - Aug 05 2017 :  2:40:30 PM  Show Profile  Reply with Quote
I never cough up mucous or even cough for that matter. The only time mucous was ever mentioned was when I went to the hospital last yr. SOB and the next day he did that thing down to the lungs and said he took out thick mucous that he said I would have never been able to cough up... and I am able to use the neb 4 times. I never use the regular inhalers, only the neb. I have been slacking off on the neb, so I guess I better start doing it.
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Roadrunne98
Member

USA
199 Posts

Posted - Aug 06 2017 :  11:08:06 AM  Show Profile  Reply with Quote
after reading that the anticholinergenics ( the ipratropim bromide) reduces the amt. of mucous in your lungs I put both in my nebulizer last night. The albuterol and the ipratropium bromide. I could feel something different while watching tv and then I started to cough a little, which I don't do to often. Then I coughed a little more and I couldn't believe it. I brought up clear phlegm and spit it out. Now is this how it works, loosening the phlegm enough to get it up. By not adding the ipratropim I don't cough or bring up phlegm, so is this helping me or hurting me by adding it to the neb?
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 06 2017 :  3:58:02 PM  Show Profile  Reply with Quote
It is helping you. If you only have so much room in your lungs for air and if the mucous is taking up some of that room, there's not enough room remaining for a good amount of air.

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Sandy9s
Member

USA
298 Posts

Posted - Aug 06 2017 :  4:54:11 PM  Show Profile  Reply with Quote
Roadrunner, you didn't say if you were on 24/7 oxygen......and what number the Pulm. told you to use.

Re: your medication.........My Pulm. will sometimes just give me a sample of another drug, telling me to stop a different one....just until the "sample drug" is finished. He says just switching drugs for a little bit can kick-start making me feel better. It usually works.
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Roadrunne98
Member

USA
199 Posts

Posted - Aug 06 2017 :  8:59:03 PM  Show Profile  Reply with Quote
Yes I am on oxygen set at 2. I am afraid to put it higher because when I sit down and deep breathe I can get it up above the 88. I just changed for he and walked out to do the nebulizer and thought I would die that's how sob I was. But when I sit and deep breathe and calm down the oximeter goes up. Right now while doing the neb it is 93 and I didn't change it from 2. But just a little exertion wipes me out. Should I go back to the advair 250/50 for a change like someone said. I have loads of sam[les that pulmonologist gave me although he said no inhalers will help. I have to ask this. The past hr. It thundered and one zap of lightning and rain and it's all over. Can that weather make me worse? My husband says if I am not outside I shouldn't be affected. I differ with him.
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skhill
Member

USA
192 Posts

Posted - Aug 06 2017 :  9:32:53 PM  Show Profile  Reply with Quote
This all scares me when I read how so many of you are struggling to breathe. I struggle too but not as bad as your Roadrunne98. I am only in stage 3 though and not on any meds for my COPD. All the side effects really bother me and until I cant breathe at all I will not take them. I hate the way they make my heart feel and the chest pains they give me. I wish they would make a bronchodilator that did not affect the heart rate at all. I would be so grateful. I have found that even when I don't go outside into the humidity it still affects my breathing. I get more SOB for sure. Since I am not on any meds whenever I do go out to shop I use a mask over my nose and mouth. It helps a lot. I don't go out without one. It is a surgical mask. They are good in the winter too. Good to help keep air borne germs from being inhaled during the flu season too. I am not looking forward to my SOB getting worse but I know it will. Others on here say they have had COPD for many years and theirs has not advanced much in those years that it is a slow progressing disease. I was diagnosed about 15 years before I got to the point that I needed meds. I got a cold one time and when the cold started getting better I woke up one morning and I could not breathe and it has been that way ever since. Not sure what caused it to advance so quickly either.
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faybees
Member

USA
62 Posts

Posted - Aug 07 2017 :  11:11:44 AM  Show Profile  Reply with Quote
Roadrunner. Why does your oxygen stay at 2lts? I have 2 for sleep and 3 for moving around, I know everyone is different. You should not go below 88 if you are on oxygen, you should be using it to avoid that and keep the numbers in a place where you feel comfortable. You need to have a sit down talk with your doctor.
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bamagal73
Rookie

USA
3 Posts

Posted - Aug 07 2017 :  1:00:56 PM  Show Profile  Reply with Quote
Spiriva made a huge difference with me. I also use the Albuterol and Ipratropium in my nebulizer. I know some lung docs frown on that but I've been doing it for 12 or more years now. I was still working when I started the Spiriva and thought I was going to have to retire but it helped me to be able to work a few more years.

Linda Lee
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jmrommes
Contributing Member

1685 Posts

Posted - Aug 07 2017 :  4:01:34 PM  Show Profile  Reply with Quote
Roadrunner, you're doing a lot of unnecessary potential damage by letting your O2 get lower than 88 when you're actually using O2. I*f your provider hasn't talked with you about using your oximeter to tell you when to turn it up, then they've really done you a disservice. Use your oximeter and when you're moving around, turn the O2 up and keep your sats n the 95 range. That's lower than your doc's sats when he's moving around, but it should be fine for you. Personally, I like to keep mine between 95 and 98, where the rest of the world is. Why should I or you be a second class citizen when it comes to how much O2 we have?

If your oximeter shows your sats at 95 or so, and you're still SOB (which can happen easily) don't turn the O2 up because it won't do you any good and could do a bit of harm. But if they're down, then turn your O2 up for heaven's sake!

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

USA
199 Posts

Posted - Aug 07 2017 :  6:09:37 PM  Show Profile  Reply with Quote
I have the 02 on 3 and sitting at the table after supper and it is fluctuating 87,88, 89. Just walked toward my b/r and came back and sat at the table. Now it is showing 82/100, now 84/96, 84/96. I took a couple of pursed lip breaths and it popped up to 90/92. I felt better going around the kitchen on 3, but it's still going down below that 88 even with the 3. It will pop up if I sit and breathe deeply.89 or 90 is what it's popping back and forth at and I am just sitting here doing nothing. I even put a new battery in the oximeter. I am putting it away. It says 87 now. No wonder when I move it goes down to 79 or 80. What do you make of this.
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jmrommes
Contributing Member

1685 Posts

Posted - Aug 07 2017 :  8:19:15 PM  Show Profile  Reply with Quote
I think you need to talk with your doc, and have him walk you around the office with an oximeter on your finger so someone can get a good idea of what's going on with your O2 sats and get your O2 up to a level that doesn't invite heart and brain damage. There's nothing that says you can't turn it up and get your sats up to 95 or so, at least while you're sitting down, doing nothing.

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