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vonnie15
Rookie

Australia
11 Posts

Posted - Jun 27 2017 :  1:54:27 PM  Show Profile  Reply with Quote
Hi my name is Yvonne and I have COPD with a lung capacity of 44%. I also have stage 4 kidney disease and multiple myloma (cancer of the blood), but it is the COPD that stresses me the most. Everytime i get the flu I end up in ER and in hospital for at least a week as I have to go on oxygen cause I can not breathe. I can't believe that smoking has done all this to me and I am only 51. The problem is when I stress I smoke. I am having so much trouble trying to quit and am still smoking 3 cigarettes a day. Does anyone else have this problem with giving away the smoke. I am also scared to get the flu again as I hate going to hospital. I have an action plan now from my pulmonary doctor which includes taking my puffers, predmisolone and augmentin forte (antibiotic) do you think this will help with my next attack? Every time I get the flu or pnemonia I end up losing more lung capacity and the COPD gets worse. I am sick of not being able to breathe like other people. Are there any excercises or anything I can do to help my breathing get better? I would really appreciate some advise on how i can continue to deal with this disease. Thank you so much for any advise given. Yvonne.

Yvonne Carter

Diane545
Member

USA
161 Posts

Posted - Jun 27 2017 :  5:06:32 PM  Show Profile  Reply with Quote
I was in your place and finding it hard to give up smoking. Was either in ER or hospital every few months. I was told same that every time I was sick it was taking away from what lung I gad left. I quit cold turkey 10 years ago. I am on a preventative program to help stop from the flu From turning into a hospital stay. I will admit sometimes it works and other times it don't. But I want to prolong my life and know smoking wasn't going to allow that. My mom died of emphysema at 71 and she never really quit smoking. I feel she gave up. Please keep trying and pushing forward.
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Sokcap48
Senior Member

USA
835 Posts

Posted - Jun 27 2017 :  5:43:19 PM  Show Profile  Reply with Quote
What is making your COPD worse is your smoking! QUIT! The sooner the better. I can't speak to your other health issues but at 44% you can still be very active.
1-Quit smoking 2-Get a doctoor approve exercise plan and stick with it and push yourself to do more and more. Eat a heart healthy diet. It will make you stronger to fight your other battles. I was still hiking up mountains at 30% And wasn't on 02 yet ( probably should have been) and was on 02 at 19% still hiking short trails in the mountains, slow but still hiking. So Quit,exercise,eat right and it will surely help you be stronger for your other ailments. Best of work.

Paul-Ut
The Journey Continues.
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joeabby
Member

USA
40 Posts

Posted - Jun 27 2017 :  7:07:02 PM  Show Profile  Reply with Quote
Yvonne,I'm 76 & smoked for the better part of 55 yrs. Stopping is the hardest thing I've ever done. Even after 5 trips to the hospital, I'd start again, not near as much, but I just had to have that filling sensation as the smoke went into my lungs. I finally was able to quit in 2014 after 10 days in ICU, but the craving just wouldn't go away. Pills & patches were expensive & didn't help much. I need willpower but have none. Some of us are just hopeless!!
So, I started using e-cigs 2 1/2 yrs ago. They've come a long way technology-wise since then. They're far less dangerous than 'puffers', & much cheaper. The FDA is still researching their dangers. In many different, independent studies, lab tests report barley detectable amounts of carcinogens. Most of the 'detectables' are from some of the flavors in the 'juice'. But, I still get the kick & fullness from inhaling the vapor.
So far, I've not had any adverse effects I'm aware of but I also know that anything you inhale besides clean air & your meds are probably not doing you any good.
At any rate, I empathize with you & hope you can quit smoking one way or the other. Get off the cigarettes, because they're DEFINITELY destroying your lungs, throat, esophagus, etc, etc.
Good luck!!


Gettin old ain't for wussies!
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Sokcap48
Senior Member

USA
835 Posts

Posted - Jun 27 2017 :  9:28:54 PM  Show Profile  Reply with Quote
Yvonne----NO NO NO NO on E-cigs you are still sucking crap in your lungs. And no they are not better than cigs, who ever says that is blowing smoke! They are not regulated and you don't know what you are getting introduced into your lungs. Our Admin posted a lot of info on ecigs. Please see and read his posts on the perils of e-cigs. Just Quit!

Paul-Ut
The Journey Continues.
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Sandy9s
Member

USA
308 Posts

Posted - Jun 27 2017 :  10:19:36 PM  Show Profile  Reply with Quote
Quitting smoking is hard. So -- don't "quit." We (husband and I) just "ran out of cigarettes" on 8/12/99. We had a stash of over 20 cartons and when those ran out, we would not buy any more. But I would never say "I quit." BECAUSE I said I could again make that decision to either start up again or quit when I was 80 years old -- 20 years forward! Well -- that 80th birthday is in 1-1/2 years and it's on THAT day that I will make the decision to "quit" smoking.....not 1 day before that day! (It was a goal to reach Age80!)

Everyone needs a motivating factor to actually quit smoking. Mine was when the Heart Doctor explained to me exactly what the NICOTINE in the cigarette does. I had already been diagnosed with about 75% blocked carotid arteries. He said that the nicotine causes a JOLT to your blood which forces the blood to swoosh quickly through your arteries...picking up any stray pieces of placque in the way....to cause a stroke in the process!!!! Since it is the JOLT that we all smoked for, I understood perfectly what he was trying to tell me --- that the nicotine would jar loose the placque in my carotid arteries and cause a quick stroke!

That FINALLY made common sense to me -- the 1st thing that ever did! I had smoked for 42 years, ended up with 3/pk. a day. I used Zyban for 1 month; husband quit cold turkey.......both on 8/12/99.

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PennyPA
Contributing Member

USA
5826 Posts

Posted - Jun 28 2017 :  12:18:53 PM  Show Profile  Reply with Quote
Everyone has stressed to you the importance of quitting smoking. If you only have 3 a day, you should be able to cut that down to 2 a day. My question though is: Why do you get the flu so much?? Are you sure it's the flu? Flu has a "season", you know. If it truly is the flu, why aren't you getting an annual flu shot? Have you had your pneumonia shot?

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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faybees
Member

USA
116 Posts

Posted - Jun 28 2017 :  1:22:24 PM  Show Profile  Reply with Quote
Try Chantix to stop smoking. I was a professional smoker for 40 years and loved it. I tried to quit I don't know how many times, patches, hypnosis the lot. Then I got bronchitis and ended up in hospital for 5 days. My pulmo had samples of Chantix, it had just come out and she gave me a pack. That was the magic bullet for me. I was worried about the side effects because I am one of those people who when given a pill and told it might make you feel drowsy, I go into a coma lol. This med was fabulous, no side effects for me. My husband watched me quit and he took it too and quit. Unless you stop the cigs and get yourself onto a rehab program then there is nothing that will help you. Oh and the e-cigs, girl you are fooling yourself.
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vonnie15
Rookie

Australia
11 Posts

Posted - Jun 28 2017 :  4:52:01 PM  Show Profile  Reply with Quote
quote:
Originally posted by PennyPA

Everyone has stressed to you the importance of quitting smoking. If you only have 3 a day, you should be able to cut that down to 2 a day. My question though is: Why do you get the flu so much?? Are you sure it's the flu? Flu has a "season", you know. If it truly is the flu, why aren't you getting an annual flu shot? Have you had your pneumonia shot?


Yvonne Carter
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vonnie15
Rookie

Australia
11 Posts

Posted - Jun 28 2017 :  5:00:23 PM  Show Profile  Reply with Quote
Thanks to everyone for their advice. I really appreciate it. Penny I have had my annual flu shot but can not have a Pnemonia shot due to my chemotherapy and current regime of needles that I get for the cancer. I get the flu a lot as I do not have an immune system due to the cancer and chemo. You are right thou, i can cut back to 2 cigs a day. I am aiming to have nothing each day and only have one if i am absolutely desperate. I did give up smoking for 6 months in December 2015 when I had a stem cell transplant for my cancer. Thanks Again.

Yvonne Carter
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jmrommes
Contributing Member

1731 Posts

Posted - Jun 29 2017 :  08:31:56 AM  Show Profile  Reply with Quote
Like everyone else, I'll say you need to quit smoking. Until you do that, the things your doc has been wise enough to prescribe won't work very well, because you're continuing to do damage to your lungs. With your co-morbidities, you should be doubly motivated, because none of those things is immune to the effects of smoking.

If you stop smoking, then you can begin to make progress. Otherwise, it a very slow death and not a pretty one. Sorry to be so blunt, but this is the "inconvenient truth" you need to face.

Exercise not only lets me live, it enables me to have a life.
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Sandy9s
Member

USA
308 Posts

Posted - Jun 29 2017 :  09:14:52 AM  Show Profile  Reply with Quote
Being blunt about quitting smoking --

If I were diagnosed as "terminal," i.e. less than 6 months to live, I would continue to smoke. It's possible that the nicotine would do the job more quickly. (I had a girlfriend who did just this thing with very terminal lung cancer.)

If I were not diagnosed as "terminal," but did not want to quit smoking, I would be seeing a therapist because I would be either in denial, in depression, or have a hidden wish to kill myself -- all of which need some therapist help.
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vonnie15
Rookie

Australia
11 Posts

Posted - Jun 29 2017 :  2:54:38 PM  Show Profile  Reply with Quote
quote:
Originally posted by Sandy9s

Being blunt about quitting smoking --

If I were diagnosed as "terminal," i.e. less than 6 months to live, I would continue to smoke. It's possible that the nicotine would do the job more quickly. (I had a girlfriend who did just this thing with very terminal lung cancer.)

If I were not diagnosed as "terminal," but did not want to quit smoking, I would be seeing a therapist because I would be either in denial, in depression, or have a hidden wish to kill myself -- all of which need some therapist help.

Hi Sandy. Thanks for that. I honestly think I am denial with this COPD. I still can't believe this has happend to me. I can't believe that smoking does all this damage. I am also in denial with my cancer. I am not terminal thank God but get really depressed because some days I just can't breathe. I just want to be normal again like everyone else. I feel so alone..

Yvonne Carter
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Sandy9s
Member

USA
308 Posts

Posted - Jun 29 2017 :  3:08:04 PM  Show Profile  Reply with Quote

Vonnie -- You've solved your own problem.......please get yourself some therapist help. Hospitals have Group Help Sessions for several things and this is where I would start....with a call to your local hospital. Good luck to you. You don't have to feel alone.......there are ALWAYS people who have similar things as you have and also need some company!
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deb-fla
Member

USA
53 Posts

Posted - Jun 29 2017 :  5:44:59 PM  Show Profile  Reply with Quote
QUIT SMOKING. I quit 11 years ago, was diagnosed with COPD 6 years ago. I am at end stage now, If i were told i was dying today, I would not touch a cig

deborah brantley
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vonnie15
Rookie

Australia
11 Posts

Posted - Jul 01 2017 :  7:05:13 PM  Show Profile  Reply with Quote
I am now on day 2 without smoking. I am determined to do it thanks to all you have said to me. I know I have a long way to go but I am not giving in!!

Yvonne Carter
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tsainta
Contributing Member

USA
1705 Posts

Posted - Jul 01 2017 :  7:26:18 PM  Show Profile  Reply with Quote
"end stage" I see that term thrown around by many people. I can't find any scientific literature that defines it. Could someone define it for me?

Tony-CA

50% of dealing with COPD is common sense.
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Dave-OH
Administrator

USA
4003 Posts

Posted - Jul 02 2017 :  6:56:38 PM  Show Profile  Reply with Quote
End stage is no longer used, stage 4 is now the term is defined as part of the GOLD standard. Based on FEV1 or other scores.

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

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Dave-OH
Administrator

USA
4003 Posts

Posted - Jul 02 2017 :  6:57:15 PM  Show Profile  Reply with Quote
http://goldcopd.org/

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

My Site: http://lungresources.com
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tsainta
Contributing Member

USA
1705 Posts

Posted - Jul 03 2017 :  12:21:56 PM  Show Profile  Reply with Quote
Thanks, Dave. I know that. I was asking the question of those who use the term "end stage" to find out what they think the meaning is.

Tony-CA

50% of dealing with COPD is common sense.
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PennyPA
Contributing Member

USA
5826 Posts

Posted - Jul 03 2017 :  11:51:32 PM  Show Profile  Reply with Quote
I've been at Stage 4 since at least 2002 (although my LVRS lifted me out of it for a couple of years) but I haven't hit "end stage" yet. To me, "end stage" is when they put me in the ground.

However, some docs consider it's when they've thrown the complete arsenal of current meds at you and they feel there's nothing else they can do for you. It's basically when the doc has thrown in the towel and given up.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS





Edited by - PennyPA on Jul 03 2017 11:54:28 PM
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Sandy9s
Member

USA
308 Posts

Posted - Jul 04 2017 :  09:38:26 AM  Show Profile  Reply with Quote
Penny -- You've hit the nail on the head regarding "when the Doctor throws in the towel on your care, you've hit End Stage." THAT is the secret to living longer: Find a Doctor (and I have one of these jewels) who has 1000 tricks up his sleeve and is forever looking for another medicine or inhaler to try. And even though my FEV says "severe", he has determined that I am only "moderately severe" because I still sing, am Director of a Chorus, and do other things. When I couldn't walk much outside without my Sats going too low, he immediately prescribed oxygen for walking outside. When I am having a tough time with a Cold with too much coughing, etc., he says I should immediately put myself on antibiotics and prednisone.........and I have these on hand with the doseages previously prescribed -- to use again. He trusts my judgment as to when I need to do these things so that I can continue to function and not lay in bed.

He says I should call him whenever I want to -- when things are not coming along the way I think they should. He is always willing to try something new.......and usually gives me a Sample of something new that he thinks might be helpful at that time.

My Pulmonologist is a one-in-a-million; I've had him for about 13 years or so. I trust him; he trusts me. We have the same attitude of "doing whatever it takes" to keep functioning and breathing the best I can with my about 35% FEV. I am not yet on 24/7 oxygen; he says I don't need it yet. It's the phlegmy airways that I have to be concerned with when I'm having an exacerbation. And they can last for a couple of months before clearing up again!

Anyway -- my advice to anyone who asks is that you find a Pulmonologist whose personal attitude is one of never giving up. This means he/she will keep trying to get you better -- no matter what new medicine he/she says you should try. And you should always feel that you can call him/her when you are "in trouble". I hope you all find one as good as mine!
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jmrommes
Contributing Member

1731 Posts

Posted - Jul 04 2017 :  11:50:51 AM  Show Profile  Reply with Quote
Sandy, my advice in looking for a pulmonologist is to find one under 40; generally they've had the advantage of the most recent literature and research into COPD and there are some very exciting things going on now. They're less likely to talk about "end stages", because like your guy, they know there are lots of different med combinations that might work better for you and they're more likely to see you as a partner rather than a disease state. They also know that what didn't work five years ago might work now.

I interviewed several pulmos before I decided on my current one, and we started off with the relationship you described; I wasn't required to demonstrate to him that I had sense enough to do things right.

I don't think you're guy is one in a million; I think there are a lot more like him out there and I know a lot of them. There just aren't enough of the "not so hot" ones retiring!

Exercise not only lets me live, it enables me to have a life.
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Sandyspen
Member

USA
262 Posts

Posted - Jul 28 2017 :  09:14:11 AM  Show Profile  Reply with Quote
I agree Jean.

To the other Sandy: we must have the same doctor. My pulmo is a jewel too!

I can call at any time. He is always trying something new and swears I'll still be around when he retires. (He's about 45 and I'm 70 and FEV1 19%.

I still laugh about the time we were talking about ADC. He wanted to see their Symbicort to read the label. Next visit, I brought him a sample with enclosed insert. He opened the package, read the insert, sucked down a dose. Then said, "Oh yeah, it's fine." .

I still laugh everytime I think about that.

~ Sandy
"Happiness" is not a destination--it's the trip!
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faybees
Member

USA
116 Posts

Posted - Jul 28 2017 :  11:47:07 AM  Show Profile  Reply with Quote
I love my pulmo, there I said it lol. I had a fabulous pulmo when I lived in AZ and I did not want to move back to PA but work related stuff said we had to sooooo had to go look for someone new. I found a guy and he was ok. Although he never looked up from his laptop during the appointments. He seemed to be on the ball. Trouble came one time when I got a really bad exacerbation. I called for an appointment and was brushed off by his receptionist. I went to my pcp and said I need to find someone else. He recommended the guy I have now. I called him that same day from the car and he said to come in the next day. My goodness. What a difference. He spent almost 1.5 hours with me just talking about everything to do with me and my disease and meds etc. I hasten to add I was in a bad way, really sick and in a wheelchair when I went in to see him. I had just about given up. He fixed everything for me.

He takes his time and talks to his patients. He said he is not about the disease, he is about the whole person. He certainly got me back on my feet in short order. I have watched him with his other patients. Some of them cannot afford their meds and he gives them meds for free. He is kind and funny and caring. He is a one man practice and God knows what I am going to do when he decides to retire. I wish you all could go see him.
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Jane-PA
Rookie

USA
15 Posts

Posted - Aug 30 2017 :  02:18:00 AM  Show Profile  Reply with Quote
Hi faybees, there is a chance I will be moving back to your area, nothing is certain yet, just maybe. You know how interested I am in seeing your Pulmo so am wondering if you could give me his name again. I think I know it, but want to be sure.

Don't know if you know this or not, but jeral passed away July 25th I think. He had been in the hospital for awhile and then released. He said from the start his health wasn't good.
Sad news, but I thought you would like to know. Probably Penny too & rosy tomato would too.

The greatness of a nation can be judged by the way its animals are treated.

Mahatma Gandhi
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faybees
Member

USA
116 Posts

Posted - Aug 31 2017 :  11:23:49 AM  Show Profile  Reply with Quote
Hi Jane. My pulmo is Kenneth Lander and he has his main office in Crozer and does Mondays and Thursdays at Brinton Lakes. In fact I am seeing him this afternoon. Thanks for the update on Jerral, sad to hear when this disease gets the better of one of us.
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