1. < COPD: Chronic obstructive pulmonary disease

COPD end stage: Anyone else?

Posted by robertjr @robertjr, Dec 16, 2017

Sorry havent been spending much time writing lately.Been going to hospital few times for breathing lately..Had a few discussions with pulmonologist,fev was 16 ,going to needa wheel chair.Right now cant even walk out to the car.Even room toroom getting hard..I realize copd doesnt get better but im only 63 not that old.

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 16, 2023
In reply to @mnp1 "Hi. I’m happy to hear you have found something that helps you. My seeet Dad has..." + (show)
@mnp1

Hi. I’m happy to hear you have found something that helps you. My seeet Dad has severe COPD and much trouble sleeping. Nothing seems to help him get a good night’s sleep. What is the Trilogy sleep system? Thank you.🙏🙏🙏

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@mnp1, you may be interested in these related discussion about the Trilogy ventilator

- Trilogy breathing device
https://connect.mayoclinic.org/discussion/trilogy-breathing-device/
- Questions about the Use of a Trilogy Machine
https://connect.mayoclinic.org/discussion/the-use-of-a-triolgy-machine/

REPLY
points | @points | Mar 17 11:10am
In reply to @jamienolson "hI @robertjr. I'm sorry to read this post- it hit's home. My Dad has COPD. You..." + (show)
@jamienolson

hI @robertjr. I'm sorry to read this post- it hit's home. My Dad has COPD. You are right....63 is young. I wish I could say I hope things get easier but with COPD things don't get easier.
The Mayo Clinic COPD Diagnosis and treatment web page (found here https://www.mayoclinic.org/diseases-conditions/copd/diagnosis-treatment/drc-20353685) mention seeking a support group. Do you belong to one? or do you find that the support on Connect is sufficient? what are your thoughts on this?
For the sake of future readers and if you don't mind sharing- What things have you noticed that make the day easier? What things can family and friends offer someone with COPD for help? Have you had any treatment for COPD?

sending peace your way. 🙂 Jamie

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We had a great support at our local hospital but then COVID hit. That ended out meetings. I gained a lot of confidence from group. Cannot find anything else close to where I live. This is group is my dependence.

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grayner | @grayner | Mar 18 2:54pm

I wish I could find a group to join. Any suggestions out there?

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bsayles | @bsayles | Mar 23 10:15am
In reply to @jamienolson "hI @robertjr. I'm sorry to read this post- it hit's home. My Dad has COPD. You..." + (show)
@jamienolson

hI @robertjr. I'm sorry to read this post- it hit's home. My Dad has COPD. You are right....63 is young. I wish I could say I hope things get easier but with COPD things don't get easier.
The Mayo Clinic COPD Diagnosis and treatment web page (found here https://www.mayoclinic.org/diseases-conditions/copd/diagnosis-treatment/drc-20353685) mention seeking a support group. Do you belong to one? or do you find that the support on Connect is sufficient? what are your thoughts on this?
For the sake of future readers and if you don't mind sharing- What things have you noticed that make the day easier? What things can family and friends offer someone with COPD for help? Have you had any treatment for COPD?

sending peace your way. 🙂 Jamie

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Hello, I too am sorry to hear this and relate as my wife, 61, has a very aggressive case COPD emphysema….would be very interested in shared comments on anything that make the day easier…what can I offer her to help as I feel so helpless against this disease?…have a blessed day…..bobby

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1 reply
grayner | @grayner | Apr 8 2:27am

to all: ask your Doctors about Palliative Approach to care and if they can help with a care team. This is NOT Hospice but a way in which those of us with serious, chronic and uncurable illnesses can organize their lives with people to help us navigate the journey with some peace and calmness instead of chaos.

Please check with your Physicians and ask. "What is Palliative Care?" I think you will be surprised at the help and resources available. We don't have to rely on family that may not know how to help; be your own best Advocate for your health and well-being. Speak up!

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Christine | @thisoldewe | Apr 8 8:45am

YES! I agree with grayner.
Palliative care programs are excellent. The staff and caregivers are trained in all the special care that you require. Also have the resources for the many practical questions and decisions required at this stage of life; as well as, the emotional support for you and your loved ones.
Sending my best wishes to you all as you navigate this challenging, special, tough yet tender time.

REPLY
11moondog11 | @11moondog11 | Apr 15 7:23pm
In reply to @bsayles "Hello, I too am sorry to hear this and relate as my wife, 61, has a..." + (show)
@bsayles

Hello, I too am sorry to hear this and relate as my wife, 61, has a very aggressive case COPD emphysema….would be very interested in shared comments on anything that make the day easier…what can I offer her to help as I feel so helpless against this disease?…have a blessed day…..bobby

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Google an Airvo 2 machine. I've been stage 4 COPD Emphysema over 4 years and this machine has made a world of difference. It delivers under pressure heated and humidifier air with or without oxygen deep into the lungs. Greatly reducing phlegm and c02.

REPLY
1 reply
11moondog11 | @11moondog11 | Apr 15 7:24pm
In reply to @11moondog11 "Google an Airvo 2 machine. I've been stage 4 COPD Emphysema over 4 years and this..." + (show)
@11moondog11

Google an Airvo 2 machine. I've been stage 4 COPD Emphysema over 4 years and this machine has made a world of difference. It delivers under pressure heated and humidifier air with or without oxygen deep into the lungs. Greatly reducing phlegm and c02.

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I am also on palliative care and highly recommend you look into it.

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shirleyhargin | @shirleyhargin | May 5 7:38am
In reply to @jamienolson "hI @robertjr. I'm sorry to read this post- it hit's home. My Dad has COPD. You..." + (show)
@jamienolson

hI @robertjr. I'm sorry to read this post- it hit's home. My Dad has COPD. You are right....63 is young. I wish I could say I hope things get easier but with COPD things don't get easier.
The Mayo Clinic COPD Diagnosis and treatment web page (found here https://www.mayoclinic.org/diseases-conditions/copd/diagnosis-treatment/drc-20353685) mention seeking a support group. Do you belong to one? or do you find that the support on Connect is sufficient? what are your thoughts on this?
For the sake of future readers and if you don't mind sharing- What things have you noticed that make the day easier? What things can family and friends offer someone with COPD for help? Have you had any treatment for COPD?

sending peace your way. 🙂 Jamie

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going out to eat when I can, and family coming to visit

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @shirleyhargin "going out to eat when I can, and family coming to visit" + (show)
@shirleyhargin

going out to eat when I can, and family coming to visit

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Nice tips, @shirleyhargin. How long have you been living with COPD? Will family be visiting soon?

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