COPD and Smoking

[jillar]

As many of you know I was officially diagnosed with severe emphysema and COPD after I had respiratory failure in January of 2020. Most of you also know that for years I was struggling with breathing issues that I was told was asthma. In the two years leading up to my respiratory failure I went from 110 pounds on a 5'5" frame to just 79 when I was admitted into the ICU. My prognosis at that time was pretty grim, get better or go home on hospice. But either way I was also going home on oxygen. Since then I have put most of the weight back on and continue to feel myself get stronger each day. So then what's the point of this post you may be asking and its this....

I found a great group for people with COPD on Facebook which is ironic because I never used Facebook pre pandemic but the group is awesome. So many people that can relate and answer the many questions those of us newly diagnosed have. Much like our community does. 

Here's the sad part, I read post after post from members of that group still smoking. Some are on oxygen and still smoke!  I of course pass our site on to them and I hope they find their way here. Its just really sad to see. There's even a few who's Drs have refused certain procedures because they're smoking. Life saving procedures too I might add.

COPD is a progressive disease with no known cure. It can be slowed with proper medications and quitting smoking. Sadly we can have it for years and not even know it until we get an exacerbation. Mine was thought to be asthma. 

My day consists of trying to keep my 50' oxygen tubing out of the walkways and from getting caught in the doors. I'm embarrassed to go anywhere because people will be whispering things like "that's what happens when you smoke" etc. My poor dog and cat also have to dodge it while I'm walking down the hall to feed them. Its no way to live.

I'm not looking for any sympathy I just want to put a brutal face to this terrible addiction in the hopes it helps someone quit or keep their quit.....

Edited June 1, 2021 by jillar

[Linda]

@jillar Thank you for sharing and your honesty about the illness.I have so much respect for you and willingness to help others is out standing. You are such an awesome and kind hearted person. I myself and I know many more of us on the train thank you  for all that you do for us here!!! Wishing you best of health and remain getting stronger every day!!!

[Gus]

Thank you @jillar! That is about as brutally honest as you can be. What I have to say is I believe that you have done everything possible to help yourself since your diagnosis. I hope that you can stave off the final result for a very long time to come. You deserve it. Your unerring and unwavering support of others is a rare find these days. Now let’s get back to kicking Nicodemons butt!

[Reciprocity]

Know that you have done the best thing you could by quitting smoking and it's important to let others know the reality of long term smoking.

 

If your story isn't motivation for others to quit & stay quit then I don't know what is  Unfortunately, as you stated in your post about the Facebook group, some just don't heed the message no matter how or where it's delivered. This is how insidious this addition is! 

We are all invincible .... until we aren't!

[Katgirl]

Wow, @jillar I had no idea you suffered with a chronic lung condition. I am so sorry to hear this. I think it’s very admirable that rather than feel sorry for yourself, you spend your time helping others to keep their quits. What a gutsy chic you are!  As for being embarrassed, don’t be! No one has the right to judge another person, and certainly not someone with any physical disability. And, if they do, they are just assholes. Eff what others think! Go on outside, if you like. You are free of your addiction, and should also be free to take a walk outside, without fear of being ridiculed. Do what I do! Fake it til you make it! After awhile, the looks from others won”t bother you.

KAT

[d2e8b8]

@jillar so sorry to hear this.  I wasn't aware as I was dealing with my own life curveballs and didn't make my way here for some time.  You're one of the nicest people I've met (or rather haven't met) and since I was a few months behind you, your journey was an inspiration to me right from the beginning.

 

I know I should probably share my own story of the last couple of years to at least show how it's possible to keep your quit in the face of life because you never know who needs to hear it as it may benefit someone tackle their own challenges but the wounds are still too raw and I'm too chicken to share something so deeply personal.

 

I suppose they're not able to say if you can get better and get off the oxygen any time.  I would like to encourage you to go out and live your life regardless of how people react or you think they might react.  It's your life to live and make the most of each moment because they all count and they're all precious.

Edited May 29, 2021 by d2e8b8

[jillar]

@d2e8b8, my friend, I'm sorry about your struggles

12 minutes ago, d2e8b8 said:

I know I should probably share my own story of the last couple of years to at least show how it's possible to keep your quit in the face of life because you never know who needs to hear it as it may benefit someone tackle their own challenges 

This is why I shared mine... I completely understand your not wanting to share though and I hope everything is looking up for you now

[Robbie]

Thanks for your raw and honest post Jillar. I was diagnosed with COPD about three years ago and fortunately it's not too severe at present. Stupidly I kept smoking, mainly through lack of support, until a couple of months ago. It's a very scary disease and I worry that I'm heading for big problems as I get older, in my case due to smoking. Apparently it's not only smoking that causes it, so people should not be judging you or commenting on your appearance either. As the others have said, you do so much to help others and it's sad that you might miss out on opportunities because you are worried about what other people think of you. I saw a woman in a wheelchair with an oxygen tank on board at a music festival a few years ago. She was having a great time despite her disability. All the best... 

[Doreensfree]

Sweetheart.....

With tears flowing freely.....

I know only too well what devastating Illness this is ....

Not everybody understands just now crippling it is ....

It's sad to hear and know some folks still manage to smoke ...my hubby Physically couldn't even 

Take enough breath to pull a drag ....

He died of complications of this horrible illness ...

Thank you for honest post ....

We love you heaps Sweetie ❤❤❤❤

[Mee]

I am sure every smoker wonders if their years of smoking will catch up with them.  Jillar, you have been a wonderful support to me and others.  Thanks so much for sharing. 

 

[Opah]

Ok here my quip, seems soon as a doctor hears you use to smoke you automatically have COPD, its kinda like Autism in kids way over diagnosed in my opinion.

But now that I am doing well in my quip and I do know that COPD is a concern I should keep an eye out for what should I be looking for ?

I hag's seen many elephants that have tried to sit on my chest and shortness periodically of breath and coughing up the crap your lungs are now expelling is common when you are quitting  / smoke free.

So lets leave the elephant at the circus and give me some factual symptoms.

What did you feel before and when you knew for sure you had COPD? 

[jillar]

Shortness of breath is the most common sign of COPD @Opah. Other symptoms are different for everyone, some have a chronic cough. Some, like me, don't. Some have excess phlegm production. Some, again like me, don't. Some have frequent chest infections. Weight loss is another symptom, one I had. There's several other signs and normally your Dr will request a pulmonary function test to see what stage it is. As well as CT scans or chest x-rays, and blood and urine tests. 

For me I was so short of breath that I was burning more calories trying to breathe than I could consume. I couldn't even shower or get dressed without being short of breath and each cold I got only made it worse until it came to a head in January 2020. And really it was a double edged sword because at last I have treatments that are helping me. Too bad it came at the expense of my freedom from an oxygen tank..............

[Opah]

OK what I am Concerned is I do get short of breath but for no reason, it is almost like I forgot to breath, and when I lay down, it has been blamed on my Sleep apthnia but this seems different now.

I am taking so many meds now as it is I really do not want a shit load more,

It is not a big deal  a couple deep breaths and all is good, I have been using the Enhalers to keep my nose clear and that has helped.

OK enough of me for the now, and back to you

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[Opah]

I am contemplating getting one of the oxygen conspirators  for when I hike and  Hunt.  Getting older and those mountains and hills haven't gotten less steep.  They have come down on cost a bunch from when they first came out.

[Katgirl]

Opah, I am sure you mean well, but It is not a good idea to give out medical advice on this, or any forum, unless you are a medical professional. I AM a medical professional, and if asked would give simple advice, but always with a caveat to check with your own  Doctor. An O2 concentrator is probably not sufficient for someone with severe COPD. Also, if you haven’t been diagnosed with a pulmonary condition, YOU should not need one. When hiking, uphill, just take it slower.  When I watch an NFL game, and a player makes a long run, it drives me crazy,  when they show him on the bench, afterwards, getting O2. They should allow him to recover naturally. I suppose there is no real harm in his getting supplemental Oxygen, but it bugs me….. Just my 2 cents. 
 

KAT

Edited May 29, 2021 by Katgirl

[jillar]

@Opah, you can't just order one lol. You need a prescription for oxygen from your Dr first. Unless you bought one from a private party I guess but I don't recommend it unless your Dr has determined you need it.

[Opah]

OUCH  just thought it could be something she could look at or ask about. My brother had i his lungs burnt by excessive interferon treatments and he had one. made his life so much better..

No harm meant wasn't trying on a new career as Doctor OPAH

I will refrain from providing info to conceder in the future.

 

Edited May 29, 2021 by Opah

[Katgirl]

No worries, Opah! I know you were only trying to be helpful.

Edited May 29, 2021 by Katgirl

[Doreensfree]

Hubby,s Oxygen machine was supplied through the hospital ....

And was closely monitored....they have  a special oxygen team ....that kept a close eye on him ...

If I took him out ,in his wheelchair ,he had a portable tank ,that lasted two hours ...

We also had regular visits from the Fire Brigade ...to make sure we were safe ...

[Wayne045]

We looked into one of those portable oxygen concentrators for my mom rather than dealing with tanks.   But as fate would have it, she contracted pneumonia one last time and passed shortly after in the hospital.  Yes she was a smoker with both COPD and also emphysema I think.  she had a horrible wet sounding cough in the last 10 to 15 years.

 

She used a large version of those portable machines in nursing home though with no issues, and they would give us small tanks when we would take her home for dinners and such.  But @Katgirl is right check with doctor (as if we have to tell you to check with doctor as you’ve warned many others of this over the years)

[jillar]

I think this topic got a little off track. I wasn't looking for advice on portable oxygen, believe me I've researched it and also use portable tanks already. I'm just embarrassed going out in public with them.

The point of my posting was to put a face on what smoking can do to you, even years quit like I already was when I got diagnosed. And the importance of quitting before you start having breathing issues which I did not do. I quit because of my breathing issues and I should have quit before I had issues.

Also I was admittedly shocked by the number of people on the COPD site who still smoke and are on oxygen. I can't even imagine how they can do it and its sad to see when you know they can quit but they don't think they can....

[Reciprocity]

It's a helpless feeling isn't it Jillar? Knowing how it's possible for anyone to quit if they truly want to and understanding that those with COPD are just hastening the progression of their disease by continuing to smoke  There's just some si*t ya can't change no matter how much you'd like to. Sad; very sad 

[d2e8b8]

Don't know if I can predict what I'd do if I knew I had 4 weeks to live.  An extra 2 days may not be that much motivation when in your mind its a choice between living 4 weeks happily doing what you like vs living 4 weeks plus 2 days in withdrawal (or torture).

[jillar]

9 minutes ago, d2e8b8 said:

Don't know if I can predict what I'd do if I knew I had 4 weeks to live.  An extra 2 days may not be that much motivation when in your mind its a choice between living 4 weeks happily doing what you like vs living 4 weeks plus 2 days in withdrawal (or torture).

 

I agree under those circumstances. But you can live a long life on oxygen. Years not days or weeks as long as you do what you have to to stay healthy. Number one being to quit smoking...

[Doreensfree]

Brings it home ,just how powerful this addiction is ....

It's sad some folk believe they can carnt quit ....everyone Can Quit ....

I hope Jillar some take your advice and your Wisdom ,and join the Quit Train ....