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Jul 21, 2011 2:03:00 GMT -5
Post by Deleted on Jul 21, 2011 2:03:00 GMT -5
I am here to learn about COPD as I have COPD. I am afraid as I have been coughing very badly for about a year now and have lost my breath several times the last 3 months.
The pain in my back from coughing has been horrific over the last 3 weeks.
My Dr. has not told me anything about COPD so I am not sure what to expect.
Should I leave my job? Should I do the things I have always wanted to do as soon as possible?
How long can you live with COPD?
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Hello
Jul 21, 2011 7:17:09 GMT -5
Post by susanny on Jul 21, 2011 7:17:09 GMT -5
Ah, so you haven't been tested yet. That is your first order of business. You are quite young and there is an additional blood test you should have as well if it is determined that you do, indeed, have COPD. It will tell you if you have the genetic form of the disease. This form is treated differently. I strongly suggest that you see a pulmonologist/respirologist - lung dr. Your GP can order the breathing test for you if you are unable to get to a specialist. The breathing test, Pulmonary Function Test (PFT) is the procedure that determines whether or not you have a breathing disorder, as well as how far along in the disease you are. There is no sense worrying about anything until you get this done. And for heaven's sake, DON'T believe everything you read when you google COPD!!! You will read things that aren't true anymore and just scare yourself, which from your post sounds like is already happening. Don't worry, you're going to live for many many years to come and work as long as you feel able to. It's encouraged, as a matter of fact. Of course, if you are working in a hazardous job for breathing, might be a good idea to find something else. There are many of us here and most of us have been living with COPD for years. Some of us are quite severe and still kicking and screaming and getting life done. A lot of it has to do with attitude, but quitting smoking if you smoke, exercising daily, and taking/using the meds ordered by your dr. faithfully will enable you to live and live good for years to come. If it is determined that you have the illness, it is vital that you follow all the instructions, though. You can't just go about things half heartedly and expect to gain time. But you don't have to worry about wrapping up loose ends and quitting your job, dear. People can live with this for decades, depending on how severe they started out and how well they took care of themselves. And it's not a difficult thing to do, either. There's going to be a lot of people coming and encouraging you. But your first order of business is to get tested. Make that appt. and see what's going on. You may have some other problem going on. It could be as "simple" as a case of adult onset asthma. In your profile you don't mention the country in which you live. We ask for more than just being nosey, . It helps us answer some of your questions and where you live can determine the process by which things are done, as well as the types of assistance, and meds even, that are offered. It would help both you and the forum if you go back into your profile and added that information. Thanks! Pick up the phone today and make that appt!!!! And welcome to the group. So nice to have you jump right in and start learning. And you've come to the right place, we won't use scare tactics on you ever and we're not pushy at all. You'll not find a more encouraging group of people than you will here, in my opinion, of course! Sue
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Hello
Jul 21, 2011 7:21:06 GMT -5
Post by susanny on Jul 21, 2011 7:21:06 GMT -5
I re-read your post and now I'm not sure if you've been tested and told by the dr that you have COPD. Excuse me if I misunderstood at first. If you have had the breathing test, do you have a copy of the results? If not, you can request a copy and then can share with us a couple of the number values on it and we can give you some additional help. What we will mainly be looking at is the FEV1 % as well as maybe the DLCO.
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Hello
Jul 21, 2011 7:29:58 GMT -5
Post by John on Jul 21, 2011 7:29:58 GMT -5
Humble ; First I would ask your PC Dr. to refer you to a pulmonary Dr. .I not sure what your #'s are . Here you will learn from the experience of other members that by taking the right meds exercising regularly & keeping a positive attitude you could very well die from something else .. . My personal history is, when I got here I could barley do anything with out getting shortness of breath . Today all most 6 years later I'll be painting my bathroom ceiling & trim. Yesterday & a few days before I stripped the old wallpaper off. Wow I think you would say ! That amazing . . Yes it is because like you I thought I was doomed with maybe 3 to 5 years to live ( I'm 63 & plan on being here @ least anther 20 . Just to let you know it did & still does take some work . Heres what happened . I quit smoking (a must) I went to a physical rehab where they taught me much about living with COPD . I eat well get proper sleep . Also very important I got the right meds for my dx . I come here on a daily basis to be with my copd friends who are not only part of my maintenance plan but also part of my family . We have people here who are from mild to very severe . WE get our medical advice from our Dr's . We get much our emotional & spiritual support from here on COPD in Canada. . The message I carry to you to day is a message of hope . Hope for better days ahead
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Hello
Jul 21, 2011 8:05:53 GMT -5
Post by sandy07 on Jul 21, 2011 8:05:53 GMT -5
There are people around that have lived with COPD for over 20 yrs. There's a lady that goes white water rafting , with a small oxygen tank, but rafting none the less. Once you get your meds working right there is usually no limit to what is possible.
My downfall has been a lack of exercise since I quit work. I have allergies and it makes it difficult to walk outside so am thinking of going to the walking track at our new Fitness Complex. I use a treadmill now but it gets boring after a while.
Don't quit doing anything yet. Find a way to continue your life as it is. You may have to make a few adjustments but quitting work at this point would not help.
Get all the testing done so you know what's going on. Then get the right meds...you may need to try a few before you find the right ones for you. Quit smoking and get lots of exercise. Then....carry on living.
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Hello
Jul 21, 2011 10:07:07 GMT -5
Post by bobbioh on Jul 21, 2011 10:07:07 GMT -5
Looks like you got some great advice. When I was Dx in 2005, I was very severe I was 43 then,Well Ive had some bumps along the way but Im still kicking. And exspect to be for a long while. Good Luck Bobbi
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Hello
Jul 21, 2011 10:29:52 GMT -5
Post by goof on Jul 21, 2011 10:29:52 GMT -5
Same here, diagnosed in 2000, was left to myself whiteout advise how to cope with this. Went to do physiotherapy twice a week.
In 2007 diagnosed gold 3 and since then under treatment by lung Doctor.
Going to rehab in September/October.
There is some sound advise here, I hope you hear it and act on it
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Jul 21, 2011 10:43:29 GMT -5
Post by Deleted on Jul 21, 2011 10:43:29 GMT -5
Thank-all very much for taking the time to school me up on this subject. I was told I had COPD earlier this year after the Dr. had me blow into a little machine thingy.
He then prescribed me the following: Serevent Qvar Singulair tablets Ventolin
Nothing else was told to me, I have been struggling for breath within the last 2 months.
I work within the public education system and enjoy my job, and do not want to leave work.
I went to the hospital the other day because I was breathless I was ashamed of being there because the Dr. would not renew any medication nor provide any treatment other than a ventolin.
My regular Dr. is away on holidays, so I had to get the prescriptions renewed with fill-in Dr. who again was reluctant to tell me anything else.
I can hike for a couple of km and I am OK with breathing outdoors. When I am indoors, a car, or even my home I get very sick.
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Jul 21, 2011 14:31:13 GMT -5
Post by Blossom/Jackie W. on Jul 21, 2011 14:31:13 GMT -5
Humble.... that seems a tad bit backwards..... you said you were O.K. walking outside but indoors or in your car you have trouble? Something doesn't seem right.... Winnipeg right now has been having some bad A** weather, then there was the flooding (thus residual of mold and mildew etc) Are you using A/C at all anywhere?
You've obviously been tested.... do you know, or did he tell you, what "stage" you were? Also; do you have allergies and/or asthma?
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Hello
Jul 21, 2011 16:39:46 GMT -5
Post by susanny on Jul 21, 2011 16:39:46 GMT -5
humble, there are several of us who were employed in education. I was an aide until I couldn't walk to the building anymore and around the school, but my dr. hadn't tested me for oxygen and if he had done that I might have been able to stick with my job for longer. As of now I've been retired for 2 1/2 yrs. It was very depressing for me but I'm ok and loving retirement now. Just took about a year to adjust. If you are experiencing a harder time of breathing in the past couple of months, I would say you are not alone. Several of us are going through the same thing and most likely it is a temporary set back, called an exacerbation. Did the dr put you on any antibiotics or prednisone when you saw him or just the nebulizing treatment and send you home. When does your regular dr. come back from holiday? Perhaps you can make an appt now for when he/she gets back so you don't have to wait any longer. Sounds like there's something going on. Or, as Blossom mentioned, the weather you've been having can have a huge impact in how you are breathing. High humidity, high (or very low) temperatures, the barometric pressure, allergies, in addition to infections, can be culprits. If it all seems like too much for you to absorb all this information, don't fret. We were all newbies at one point and I dare say that most if not all of us learned everything we know from forums and other people's experiences and knowledge. Dr's don't have the time nor patience to teach us what we need to know. Plus they probably don't think we'd understand, . You will learn a lot if you stick around and do some reading. You can go waaaay back and read others questions and answers. And, for sure, ask away here. We love helping people. Sue
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Jul 21, 2011 18:31:29 GMT -5
Post by Deleted on Jul 21, 2011 18:31:29 GMT -5
The Dr. did not tell me what stage I was at, I never even knew there were stages until I came to this site.
I went camping and did not become ill from the air, I was camping in the Whiteshell. IN Winnipeg I become ill from the house, the car, and today from the wind blowing dust around. It was not good at all.
At this point I am having terrible pain again in my back and had to lay down.
I was diagnosed as having asthma when I was about 8 years old. Once I became married my husband had refused to let me obtain medication as "he" felt I did not need it. Needless to say that marriage has been long ended by 10 years.
Everything was going fine with my lungs until the last year, things just kinda went down hill and now they are getting serious. I came close to death as I was without breath but I had friends around me and they saved my life within the last 2 months.
I live alone but have my house up for sale now and I am staying with my mother (very uncool) because of the breathlessness I have been going through. Staying with her or my friends has ensured that I am still alive today from these episodes over the last couple of months.
However, I would like to be normal again and feel safe, I am just not sure if that is going to happen.
As for the pain in my back (between my shoulders) right now it is horrible, it is like a long dull ache. If it is still here in the morning I am going back to the hospital because I can not mange it anymore.
The Dr. will not be back for several weeks from holidays so I am at the mercy I guess of the hospitals.
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Jul 21, 2011 21:54:11 GMT -5
Post by John on Jul 21, 2011 21:54:11 GMT -5
Humble ;I see you got your picture up Yea ! .
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Jul 21, 2011 23:01:33 GMT -5
Post by susanny on Jul 21, 2011 23:01:33 GMT -5
Sounds like you've either pulled a muscle or your bones are out of wack. Have you ever been examined by a chiropractor? A couple of us have been under the care of chiro for adjustments. Also, a couple of us have been dealing with pulled muscles over the past couple of months, too. Could be anything, but the constant coughing isn't helping. That you've got to get under control. I'm really surprised you've not been given a course of prednisone. Might want to ask for one next time you go to hospital. It will reduce the inflammation in your lungs and perhaps stop that cough. Is it a productive cough, are you bringing up mucus? What color, if so. Might be an infection.
Must be nice to get that long of a holiday (your dr.)
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Jul 21, 2011 23:33:27 GMT -5
Post by Deleted on Jul 21, 2011 23:33:27 GMT -5
I am not bringing up mucus, it is a water-feeling cough with no production. It has settled down now to nearly nothing; but I have to keep taking the Qvar as that seems to quell the beast. The only time I bring up anything is about 20 min. after I have taken the Qvar and I feel a "Pop" in my chest; then I know I am breathing clearly again.
As for my back I know I have to do something because it is really painful. I am top heavy (large chested lady) so perhaps that is now really playing a role. As for my Dr. yea, it must be nice to have a long holiday!
Thank you for letting me lean on you and glean' wisdom from you all. I feel pretty alone and afraid as my family relies on me for many things, so they are not dealing to well with this diagnosis. I always have to be the tuff one, and I am just not that at all right now.
I think this is gods' way of reigning me in from doing everything and telling me it is time for me to do for me.
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Hello
Jul 22, 2011 9:40:25 GMT -5
Post by sandy07 on Jul 22, 2011 9:40:25 GMT -5
When you finally get to see your doctor again ask for a referral to a Respirologist. You'll get more testing and maybe find out what's going on. Problem is....that appointment could be many months away. But do it anyway. In the mean time...when your doc gets back...or if you happen to end up in the ER for any reason....ask for a change of meds. Tell them what you are using is not working. You may have to try a few before you find the ones that will work for you. I think there are a lot of us using Spiriva and Symbicort. Some, including myself, use Singulair as well. (helps with allergies) With the right meds you might find that the pain between your shoulder blades will go away. I can't see why the ER doctor couldn't prescribe something for you. Spiriva is a once a day, long acting bronchodilator and is specifically for COPD. It's become a common drug prescribed for us. The rest were made for asthma...but work for us as well. It takes a while , maybe a week or two, for the Spiriva to start working tho. If these ER doctors won't prescribe any else maybe they'll at least do that. Push these doctors to do something...find a new doctor...educate yourself. I've found that when I speak with some knowledge these doctors talk to me a little differently. Read all the info here and on the COPD Canada main site and you'll be ready to question the doctors. www.copdcanada.ca
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Hello
Jul 23, 2011 11:52:35 GMT -5
Post by Blossom/Jackie W. on Jul 23, 2011 11:52:35 GMT -5
Humble.... I just had a look at your age..... Although not unheard of, and I think someone has suggested it, I would strongly urge you to ask your Dr for an Alpha 1 test. You're quite young for COPD. The Alpha 1 test is a simple blood test. Won't hurt a bit....
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Hello
Jul 26, 2011 6:57:19 GMT -5
Post by guest on Jul 26, 2011 6:57:19 GMT -5
Personal attacks on anyone will NOT be tolerated on this forum.
(Post removed by Jackie W.)
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Hello
Jul 26, 2011 14:42:31 GMT -5
Post by guest on Jul 26, 2011 14:42:31 GMT -5
OK Blossom, throw the trusting and unaware new-comers to the COPD support forums into the lion's colosseum without any forwarning nor help. They're battle zones of egos and money-grabbers, overflowing with treacherous false knowledge, misinformation and know-it-alls.
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Hello
Jul 26, 2011 18:41:52 GMT -5
Post by Blossom/Jackie W. on Jul 26, 2011 18:41:52 GMT -5
I'm not going to delete the post above, but I am going to lock this thread down and leave it for reference.
Call this response Executive Privilige if you will and it's not something I would normally address openly (nor probably any Administrator) on any board for that matter but sometimes, just sometimes, every once in awhile, there comes a true test of patience and tolerance. Such is the case here.
My regret is that I'm having to lock a thread down that a patient originally began; one who was seeking perhaps support and information and someone has decided to disrupt that flow.
That's! what's troubling. So......
Dear "Guest;"
I'm pretty sure I know "who" you are and quite frankly; I feel, in a sense, sad for you. I understand, as do most of us, that sometimes when we're angry we strike out. And; sometimes we may strike out at what we perceive is the weak amongst our own "kind" shall we say. It's one of the "primal" parts of us as humans. Many/most have overcome it; some haven't.
"One" of the things that sets us above straight "animal" behavior and our neanderthal nature is rooted in some abilities. Two of these are "gifts" Empathy and sympathy. Most have the gifts; sadly, some don't.
This is a public forum. People come here to learn, others to learn and share, some to read, and some just want to feel like they're "not alone and not the "only ones" going through this bloody disease, both mentally and physically, let alone the co morbidities that can be associated with it.
And then you step in with your foolishness.
One doesn't normally "attack" unless one feels threatened, insecure or angry. Sometimes all three. Perhaps that's you?
How dare you inject your nonsense and one sided opinions w/o the anatomical features or intestinal fortitude to even identify yourself! You are obviously not "there yet."
However, having said that..... all things in time; and you know what? we forgive you and we; or perhaps another group like us, will be there for you when you're ready and;
I think I can speak for all of us when I say.......
We promise.
Jackie W (Blossom)
This thread is now closed.
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