Anyone Else Have COPD?

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Chronic Obstructive Pulmonary Disease.

Apparently, it's quite common.
I have the inherited kind (lucky me!) but I don't know anyone else in my family who has/had lung problems except my grandfather, who had tuberculosis.

The doctor tells me I will end up in a wheelchair, on oxygen, unable do the simplest activities, yada yada yada. Which is just fantastic news.

The nurse who did my spirometry told me I currently have the lung function of a 70 year old. But there's some really fit 70 year olds, hey?

I'm not too bad. I can still walk quite fast without getting too breathless. If I jog I get knocked up pretty quickly. I have an echoey kind of cough that never goes away. I get quite choked up with mucus at times - mainly during the night - I've woken up a few times feeling like I'm drowning in gunge.

I seem to alternate with thinking "I can beat this, it's not so bad - healthy eating, exercise and all that" and thinking "What really is the point?"

Can anyone offer any hope? Has anyone overcome this? Will I need a lung transplant?

Thanks for reading. You're a champion.

The best advice this 53-year old can offer at this time is to keep with the "it's not so bad" attitude.
I do not have COPD, but I do have diminished lung capacity on one side due to surgery complications years ago.
I have met several persons who were diagnosed with COPD, and I don't recall any being confined to wheelchairs, and these are folks who developed it as a result of smoking or job conditions. They do need to carry oxygen with them, but are otherwise ambulatory and active. AFAIK, none are potential candidates for transplants.
Carrying oxygen nowdays is not like it was in 1998 when I was pulling a big green tank behind me. Today I only use it in public if I'm going to really high elevations such as over 8,000 feet in the mountains. I also have a concentrator machine that I'm supposed to use at nites after it was determined I'm at risk for sleep apnea.
Please keep us updated with this situation, as I would be able to provide loads of tips for coping with oxygen at home or elsewhere should you end up needing it.
Here I was tethered to O2 (and other things) back when I was comfortably recovering from the surgery I had at age 35:

Thank you. That has given me hope.

According to my doctor, I'm doomed. She keeps giving me the worst case scenario and sending me for all these tests but she never discusses what I can do to help myself. I had to google that. Every time I visit I get more depressed. And I'm rubbish at communicating with her because she's Indian, and I'm hearing impaired, and autistic. I think I need a new doctor.

Thank you for telling me about those people you know. You don't know how glad I am to know they are still getting around and not confined to wheelchairs. I think I could handle the oxygen but I'd be devastated if I couldn't walk. I love walking.

My grandfather ended up having a quarter of his lungs removed and he still got around, slowly and breathlessly, but on his own two feet.

Just quietly, the night-time drowning feeling is scaring me quite a lot.

Hi

I don't have COPD but I have a chronic illness (iih) and i have to cope with it ; some periods have been very harsh

I don't really have any advice but I understand what you wrote, especially that part :

Today things are better, I think I found a sort of balance. I hope it will last and i wish you'll find it for yourself too



I agree

Uh, Raliegh, you might want to Google the name "Lenny Yule". I saw a video about this kid in the UK that has something called Interstitial Lung Disease, which to me sounds like it could be worse than COPD. This boy runs, rock climbs, rides bikes, and even skateboards while toting an oxygen pack 24/7. I would use something like him as a role model and not focus on what you "doomsaying doctor" wants you to believe about becoming inactive.

A clip from the TV programme:
https://www.youtube.com/watch?v=cGCPhZImFCs

I'm finding lately that I can't breathe properly when I put my arms above my head, like when I'm hanging out the washing.
I was helping my partner put a roof rack on the car the other day, which involved me holding one side of the rack for quite some time while he fastened it, and I almost passed out. I had to sit down and do some dedicated breathing to stay conscious.
I've noticed the same thing at night when I put my arms above my head when I'm sleeping. I wake up feeling like I've half axphyxiated.
I'm not sure why this is.
I wouldn't have thought this would put much pressure on the lungs.
And yet they say Jesus died from having his arms above his head on the cross, which results in slow suffocation.
Don't even know why I'm writing this.
Just more random worries.

Ive suspected I may have it, but don't have the resources to get properly checked. I often get that same breathlessness you described from being in certain positions. For me it's being crouched or bent over. I just can't breathe and almost go into an instant panic attack from it.

From everything I've read it seems as though it may apply for me.

My mom was diagnosed COPD years ago and never had to use oxygen. And she has a bunch of other ailments too. She just stopped smoking and was basically fine save for a little breathlessness up the stairs and so forth. But Im sure as with most diagnoses, some people have a worse case than others.

Does it cause you to have a ridiculous amount of mucus always? Do you feel any pains in your chest from it? Do you find it comes mostly in waves or flare ups, then is ok for a short time, then comes back? Just wondering to see if it's anythign like what I got going on.

I was only diagnosed this year.

Yes for the mucus. I feel like I'm drowning in it some nights. The doctor recommended giving up dairy and it's definitely improved.

I can't breathe if I bend forward either.

I get a bit of chest pain and sharp, pleurisy type pain in my lower back.

Sometimes it's worse than other times. I get a lot of infections because my immune system is compromised. Just gotta keep going.

Mine was only picked up from regularly visiting the ER with breathing difficulties and chest pain. On about the third visit, they sent me for x-Rays - although the doctor was certain I didn't have it at first because it usually affects much older people.

Let's hope you don't have it, but it might be worth getting checked out.

Raleigh, have you had your oxygen saturation checked lately? They can attach an "oximetry" wire to your finger, toe (or earlobe in my case) and test to see if your oxygen levels lower during certain activities. If your levels fall below 90%, it can cause some of the breathing experiences you described. I know because certain stresses like climbing steps or stooping over for too long will cause my numbers to plummet to around 85-86. In my case I'm at high risk of hypoxia due to an enlarged heart as well as what appeares to be the early stages of pulmonary hypertension. FWIW, I've already been through a case of plueritis years ago.

Thanks for sharing. I've been to the ER twice and they never disclosed it to me. I think they were hiding something though. Since i haven't had any medical insurance for 12+ years, they tend to rush you out of the ER if you aren't in immediate, life threatening danger. I don't think they have any legal obligation to diagnose you or further investigate if they suspect a chronic illness. And since I don't have insurance, it wouldn't be profitable for them, and that's, in the end, what it's all about.

I've recently gone to a local clinic (which despite my very moderate income is not offering me any sort of assistance other than agreeing to bill me) and they did some very basic blood work, a volunteer student doctor essentially ruled out a list of 20 illnesses on the second visit, some off which weren't even tested for, then they tried to trick me into taking Prozac after I specifically said I had no interest in taking any form of anti-depressant. They also lied to me and said erectile dysfunction was not a side effect of the medication they were prescribing when clearly it is. Doctors are mostly useless. I wish they had do-it-yourself diagnostic tools available. I believe I can do most doctors job with a relatively small amount of research. I just need them to get to the tools and data I need.

Unfortunately I've done a lot of self-induced harm to myself over the years and am starting to pay the price it seems. So I'm not going to act like some victim. You didn't evidently do anything to cause it, so you got a raw deal and Im very sorry for you if you feel significantly worse than I do, which it appears as though you do.

Do yourself a favor and get a second opinion though. That doctor seems lazy to me. Alot of them are. They just rely on people bowing down to their medical degree and just doing whatever they say. Our medical industry (assuming you are in the US) is not geared toward cures, it's geared toward symptom management- a far more profitable approach. So in this interest, many chronic diseases are labeled "untreatable/irreversible" and drugs to numb the symptoms are piled on, then drugs to treat the side effects and so on.

My point is, I'm fairly sure there are treatments going on in other parts of the world that are at least somewhat effective and you'd never know. Your doctor doesn't probably know. And if they did, they'd be afraid to tell you otu of fear of losing their license. Doctors who advocate alternative treatments are often subject to this threatening. Try your best to use your doctor as a tool, not someone to be trusted completely.

Just my two cents. Or 10. Mostly useless all the same...

I've never had oxygen levels checked.
I've only had spirometry.

What can be done if oxygen levels are found to be low?
I'm wondering if some mild weightlifting exercise would help, since that can increase oxygen in the blood.

You can go to a private doctor and get them to request the records from ER if you suspect they're not telling the whole truth.
That's what I did.
The ER told me the streaking in my lungs was consistent with asthma but the report they sent to my doctor said possible COPD.
I'm in Australia, btw.

I'm not totally innocent with regards to abusing my lungs, either.
I've been a social smoker (Though I'm not really that social so that's been very sporadic) and worked in dusty/fumey/asbestos-laden environments for many years.

I'm a big believer in natural treatments and a general healthy lifestyle going a long way in improving any health problem, so I'd like to explore those avenues before I get into medical/drug treatments.

Hope you get some closure with your own health issues.

Depending on the reason for low oxygen sats, prescribed treatment could range from just oral meds on up to supplemental oxygen therapy. In my case, I see the day coming in a few years where I'll probally need O2 24/7 again.
I suppose you could try joining a gym and "pumping iron" to see if the workout causes you to get dizzy or S.O.B. If it indeed does, you should definatly get your sats checked.
Oh, as for spirometers, I'm a real wimp at getting that ball up to the top of the tube. I even get lightheaded trying to blow up a "donut" pillow cushion.

^ Oh, believe me I'm exactly the same with spirometry.
There's no ball in the one I use (that I can see anyway).
It looks a bit like a miniature hairdryer connected to a computer.
The computer program they use always seems to be temperamental on the days I go for mine so I have to do it over and over again.
It's a wonder they haven't had to peel me off the floor yet.

The nurse always sounds so bloody cheerful when she reads out the lung age

Wow, sounds like things have really changed since the last time I had R.T.

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