How long have you lived with COPD?

Posted by puddy68 @puddy68, Sep 30, 2024

Hi there - I'm so sorry, this is my second post in 2 days. I think I mentioned in my previous post that I was FEV1 50%. I think I also mentioned [and if I didn't, it would be pretty obvious] that I suffer from severe anxiety and depression. Have managed to push a psych appointment to tomorrow - this COPD has really thrown me. I'm absolutely convinced I only have a few years left to live, no matter what I read [and I'm now staying away from google]. I realised I needed help when I wasn't believing what I'm reading, and I'm driving my family crazy. I have just one question - would people be willing to share with me how long they have had COPD for? I'm sorry for repeating myself........I'm just reaching out for as much help as I can. God Bless.

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ray420 | @ray420 | Mar 12 1:06pm

In reply to @tcarson52 "I don’t know how you keep your 02 up without oxygen. I wish I could." + (show)

Luck of the draw, I have had very few medical issues in my adult life must be good genetics

rickjudy2012 | @rickjudy2012 | Mar 19 3:36pm

I am a 79 year old man & have had COPD for over ten years. I have had 13 Zephyr valves in both lungs in 2022 & 2023. Unfortunately, I’m apparently in the 45% of people that Zephyr valves don’t help.
My FEV1 is now at 34%, I require oxygen at 4 liters/minute to walk slowly to the car, etc., but can still sit to read, watch TV, etc. without oxygen & my oximeter will read 91-92%.
I try to eat well, get plenty of sleep, & try to remain as active as possible. I use Trelegy once daily & a nebulizer with albuterol 2 or 3 times daily.
I’m slowly losing the battle but fighting it as long as I’m able.

jillzizzo29 | @jillzizzo29 | Mar 20 8:25am

Though I’ve had emphysema since I was thirty five, I wasn’t diagnosed with COPD till I was 67. It’s only been the last 2 yrs. That I have had reason to get treatment. I have 3 nodules that their keeping their an eye on but it’s the severe emphysema that’s working on me right now that is really killing me these days. Today I woke up and I have pain when I breath now. So between the shortness of breath and pain from breathing I can’t get anything done except watch tv, or read a book. One thing I am grateful for is the fact I’m NOT tethered to the o2. Just yet.

churchlady | @churchlady | Mar 20 9:06am

In reply to @jillzizzo29 "Though I’ve had emphysema since I was thirty five, I wasn’t diagnosed with COPD till I..." + (show)

You might ask your doctor about the zephyr valve. I have emphysema also and had them put in. So far they have not helped me much but they might help you.

churchlady | @churchlady | Mar 20 9:12am

In reply to @rickjudy2012 "I am a 79 year old man & have had COPD for over ten years. I..." + (show)

Sorry to hear that your valves are not working. I have 6 and mine are not working either.

jillzizzo29 | @jillzizzo29 | Mar 20 2:51pm

I see where this is going!

ray420 | @ray420 | Mar 21 8:59am

In reply to @ray420 "Luck of the draw, I have had very few medical issues in my adult life must..." + (show)

Also luck of the draw, other than COPD no medical issues. I was adopted so I don't know my genetics but they must have been good. My sister (also adopted)and I are in our 80s and doing well

hicopd | @hicopd | Mar 21 12:45pm

The valves can be removed if they aren’t working. One of the patients in my support group had them removed and then went to Stanford for a LVRS.

rickjudy2012 | @rickjudy2012 | Mar 21 1:22pm

In reply to @churchlady "Sorry to hear that your valves are not working. I have 6 and mine are not..." + (show)

The Pulmonx site indicates that the Zephyr valves help 55% of people that have the procedure. It’s unfortunate that we are apparently in that “other group”, the remaining 45%!

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