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.

Hi there…so sorry to hear… my mum couldn’t even draw enough breath do the test… she says it’s harder to breathe sitting up compared to in bed at night…she has a machine to help during the day. Does anyone else have a sore tummy with this more abdomen on the left. We can’t work out what this is. Cheers Leanne

REPLY

Hi and I appreciate the tips from all and am sorry for all of us!!
Well, I am 61 from Minnesota and love to fish and hunt and garden and mother my 4 cats.
I have COPD and use ANORO inhaler once in AM. I use O2 machine most of the time. I have a standard and a portable O2. So, I am able to go wherever I need.
I also have Peripheral Neuropathy (PN) which is very painful and also has no cure. With my meds, I can "push through the burn" and do most things I want to. This slows me down and everything I do is much harder than before the symptoms showed themselves.
I would love to hear from others progressions, fun things they did, or more tips!
Cheers, Jill

REPLY
@jillchristline

Hi and I appreciate the tips from all and am sorry for all of us!!
Well, I am 61 from Minnesota and love to fish and hunt and garden and mother my 4 cats.
I have COPD and use ANORO inhaler once in AM. I use O2 machine most of the time. I have a standard and a portable O2. So, I am able to go wherever I need.
I also have Peripheral Neuropathy (PN) which is very painful and also has no cure. With my meds, I can "push through the burn" and do most things I want to. This slows me down and everything I do is much harder than before the symptoms showed themselves.
I would love to hear from others progressions, fun things they did, or more tips!
Cheers, Jill

Jump to this post

I can so appreciate your situation. I have Stage IV COPD, but I think I am a tad more comfortable ....Have you talked to your Pulmonologist about adding a steroid to your inhaler treatment. I am on Breztri which is a combination of three different types of medication for COPD management. Also in 11/23 I had Zephyr valves inserted in my left lower lung which improved my breathing and ability to do things by 90%. Dupixent is a new medication by Regeneron that greatly helps with the secretions.....have been on that for 6 months. A real life saver. These are things that I would definitely address with your physician to help improve the quality of life! Wishing you the best!

REPLY
@kndaustin71

I can so appreciate your situation. I have Stage IV COPD, but I think I am a tad more comfortable ....Have you talked to your Pulmonologist about adding a steroid to your inhaler treatment. I am on Breztri which is a combination of three different types of medication for COPD management. Also in 11/23 I had Zephyr valves inserted in my left lower lung which improved my breathing and ability to do things by 90%. Dupixent is a new medication by Regeneron that greatly helps with the secretions.....have been on that for 6 months. A real life saver. These are things that I would definitely address with your physician to help improve the quality of life! Wishing you the best!

Jump to this post

Thank you for the information, kdalda!! The ANORO I take once in the morning is a combo of 3 types of meds. I like it. I just started with 02 mostly all the time about three months ago. So, I am getting used all of this. Was diagnosed Thanksgiving 2022 and graduated to now. They didn't give me a stage. I do do short little things without 02 and I can go longer. But, it is hard on the body and if I can use the portable, well use it, right?

My slow down mojo is PN which is painful but that's another story.

Keep on "movin through the burn"!!
Cheers, Jill

REPLY

Hi there... my mum is 73 and is in aged care due to not being able to walk or take care of herself. She is on oxygen during the day and feels like she is dying. She couldn't take a deep enough breath to do the test for COPD. I wonder however why her oxygen level when taken is obviously not as high as mine at 53 but still isn't as low as i would have expected. Is this a thing with COPD. She has smoked all her life and is down to one at mid morning now. I would really love some help on this as I only have how she feels to go on and no real medical info

REPLY
@oldkarl

@robertjr Just a couple quick ones. First, you should have two instruments. An O2 Finger gauge with a running graph of heartbeat and signal strength (Harbor Freight sells them), and a very good blood pressure gauge (wrist is good. Just remember to never touch it to your chest while it is reading AND always use it while seated.) Track your readings at least twice per day, EVERY day.

Jump to this post

I never dreamed COPD was going to be this bad. I had OPEN HEART SURGERY on 3/17/23 and I thank God I recovered with no problems, the problems started with pain in the right chest not too bad at first, but got progressively worse. I am on Trelegy for breathing relief it helps, but my DR. says it will be a rough ride. I have had 3 back surgeries, a spinal fusion L-1/ S1 down low, and the biggest problem I had was the bone taken off my left hip, it took 1.5 years to heal and stop hurting finally. These were done in ATL in 91-93 I hear things have changed. It is good to know I am not the only one to suffer these problems. COPD is as bad as any surgery.I take 50mgs of Tramadol PRN.

REPLY
Please sign in or register to post a reply.