COPD and oxygen therapy: Will I really need the therapy in the future?

Posted by mrbill @mrbill, May 13 7:38pm

Last January 18 I experienced a flare up. Our daughter had just had a double mastectomy. One minute I am with her, the next I am in intensive care with priest giving last sacrament. Spent 4 months bouncing between hospital and rehab. I would start to improve and something else, such as shortness of breath would start up. So rehab, I was in 5 different rehab facilities, would send me to the hospital where I laid around and ate lousy food for several days. Then back to rehab. There was a total of 5 trips to the hospital. All 5 in ambulance or transport, I should mention I have been diagnosed with severe COPD. Enough whining.
I was sent home with oxygen therapy. My first experience with such. After several days I would remove the oxygen and just breath room air. I would do it for four or five hours at a time. My levels stayed anywhere between 92 & 98 or 99%. I was still short of breath if I exerted myself. I am sure I could have gone without oxygen for a longer period. My question: what is going on? Will I really need the therapy in the future? I would think if I was short of breath from COPD I would need oxygen. Just can’t figure it out.

@mrbill– Good morning and hello! I'm glad that you have joined the Connect community. Oh, you can whine all you want on Connect! I also have COPD with stage 4 lung cancer and emphysema. It's horrible to have flare-ups and scary, to say the least. Members of the Lung Health group who have COPD with severe symptoms might be able to help. How long have you had COPD? What other treatments have you had?

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@merpreb

@mrbill– Good morning and hello! I'm glad that you have joined the Connect community. Oh, you can whine all you want on Connect! I also have COPD with stage 4 lung cancer and emphysema. It's horrible to have flare-ups and scary, to say the least. Members of the Lung Health group who have COPD with severe symptoms might be able to help. How long have you had COPD? What other treatments have you had?

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Hi Merry,
Thank you for the reply. Yes, those flare-ups are truly scary. Not only for you and I, but also for our significant other, wives, etc. I have been dealing with COPD for at least fifteen years. My last flare-up was about ten years ago, in the office of the pulmonologist none the less. He carted my off to the local intensive care in an ambulance. Actually it was about same time of year as these two. Treatments have consisted of daily inhalers such as Trilogy, nebulizer, which I no longer use because it increases heart rate. Doctor in hospital thought I should use nebulizer three times a day, so put me back on it. Heart rate went to 130 so the gave me pills for that which messed with my liver or kidneys. So they gave me meds for that. Enough is enough. I only use rescue inhaler as needed. Have not needed for several weeks. Oh well, now I am babbling.
How do I get to the COPD group? is only the second forum I have joined. The other being healingwell for my issues with advanced prostate cancer.

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@mrbill

Hi Merry,
Thank you for the reply. Yes, those flare-ups are truly scary. Not only for you and I, but also for our significant other, wives, etc. I have been dealing with COPD for at least fifteen years. My last flare-up was about ten years ago, in the office of the pulmonologist none the less. He carted my off to the local intensive care in an ambulance. Actually it was about same time of year as these two. Treatments have consisted of daily inhalers such as Trilogy, nebulizer, which I no longer use because it increases heart rate. Doctor in hospital thought I should use nebulizer three times a day, so put me back on it. Heart rate went to 130 so the gave me pills for that which messed with my liver or kidneys. So they gave me meds for that. Enough is enough. I only use rescue inhaler as needed. Have not needed for several weeks. Oh well, now I am babbling.
How do I get to the COPD group? is only the second forum I have joined. The other being healingwell for my issues with advanced prostate cancer.

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@mrbill– Boy, you sure have been through the mill! I love trellegy. It's helped with my breathing so much and so far have not had a problem. Let's see what others have to say once this post is moved!

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That's only the highlights. Neglected to mention GI bleed that had to be welded shut. I was given my daily regime of prednisone without food to buffer it. Just another surgery along with plueral effusions. Growing old ain't for wimps.

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@mrbill

That's only the highlights. Neglected to mention GI bleed that had to be welded shut. I was given my daily regime of prednisone without food to buffer it. Just another surgery along with plueral effusions. Growing old ain't for wimps.

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Forgot to ask, do you have link for COPD forum?

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Hi @mrbill, you are in the right group here in the Lung Health group. I'd like to add my welcome to @merpreb's and tag a few other members to join this discussion about oxygen therapy and COPD, like @waterboy @blueheeler309 @catcatanzaro60 @marczappa @windwalker @hosta @fighter @bb729 and others.

Here are some additional discussions you may wish to read:
– COPD and Emphysema: Want to connect with others https://connect.mayoclinic.org/discussion/copd-emphysema/
– Severe COPD and Interstitial Lung Disease https://connect.mayoclinic.org/discussion/interstitial-lung-disease-severe-copd/
– The Use of a Trilogy Machine https://connect.mayoclinic.org/discussion/the-use-of-a-triolgy-machine/

How long were you in ICU? How is your daughter doing?

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I was using oxygen every night year plus ago but my monologist said to only use it when my oxygen levels fell, not everyday. I needed it last fall in the National Parks when at high elevation and once a few weeks ago. I have a pulse oximeter and check when I am winded.

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@colleenyoung

Hi @mrbill, you are in the right group here in the Lung Health group. I'd like to add my welcome to @merpreb's and tag a few other members to join this discussion about oxygen therapy and COPD, like @waterboy @blueheeler309 @catcatanzaro60 @marczappa @windwalker @hosta @fighter @bb729 and others.

Here are some additional discussions you may wish to read:
– COPD and Emphysema: Want to connect with others https://connect.mayoclinic.org/discussion/copd-emphysema/
– Severe COPD and Interstitial Lung Disease https://connect.mayoclinic.org/discussion/interstitial-lung-disease-severe-copd/
– The Use of a Trilogy Machine https://connect.mayoclinic.org/discussion/the-use-of-a-triolgy-machine/

How long were you in ICU? How is your daughter doing?

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I was in ICU for 5 days. They then put me in the area/room that is next step down from ICU for 4 days. Then I graduated to respiratory floor. Daughter is doing well. Been a long haul as well. Her sister gave her a bracelet in side the bracelet is written, Fate whispers to the warrior, "you cannot withstand the storm." And the warrior whispers back, "I am the storm." Which has been her mindset. She is a fighter.

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Sounds about like what I am doing. I have been told that oxygen should stay above 90. Sometimes when I check it the finger on my left hand reads 85 to 88, but the right hand 95 – 98. Later I re-check left finger (still no oxygen) and it is also in the 90's. Do you use one of those concentrators like Phillips or Inogen makes?

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i have a large in home unit and a portable imogen.

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Do you like the inogen? Are you able to sleep with it?

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@colleenyoung

Hi @mrbill, you are in the right group here in the Lung Health group. I'd like to add my welcome to @merpreb's and tag a few other members to join this discussion about oxygen therapy and COPD, like @waterboy @blueheeler309 @catcatanzaro60 @marczappa @windwalker @hosta @fighter @bb729 and others.

Here are some additional discussions you may wish to read:
– COPD and Emphysema: Want to connect with others https://connect.mayoclinic.org/discussion/copd-emphysema/
– Severe COPD and Interstitial Lung Disease https://connect.mayoclinic.org/discussion/interstitial-lung-disease-severe-copd/
– The Use of a Trilogy Machine https://connect.mayoclinic.org/discussion/the-use-of-a-triolgy-machine/

How long were you in ICU? How is your daughter doing?

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My apologies @mrbill about the group. Of course, you are in the correct group!

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@mrbill

Sounds about like what I am doing. I have been told that oxygen should stay above 90. Sometimes when I check it the finger on my left hand reads 85 to 88, but the right hand 95 – 98. Later I re-check left finger (still no oxygen) and it is also in the 90's. Do you use one of those concentrators like Phillips or Inogen makes?

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@mrbill– The difference in pulse oxygen levels is troublesome. I think that you can bring your oximeter to the drugstore and get it checked for accuracy. Sometimes certain nail polishes (colors or brands) or cold fingers can make a lot of difference in whether it measures at all or correctly. You might also try an ear lobe or toe (if you have one small enough. Does this make any sense? Have you told your pulmonologist about your findings?

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Jus tried my toe. 95 was the magic number. Could be I am too skinny. Went from 5'8" and 165 lbs. to 130 (did go down to 118 at one time – terrible hospital food). Will check at pharmacy to see if they can check accuracy of oximeter.

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