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Follow a Couple of Tx Patients on Their Journey

This site & the information contained herein raymerd00@gmail.com

2005 - 2015

Just Between Us -

"From"   COPD'ers    "To"   COPD'ers ....

with Love and Understanding......

Prior to publishing this web site, I asked a few people  living with COPD to write and say something directly to you.  These are individuals  whom I have met these past few years on line and for whom I have tremendous respect.

They have helped me, by their knowledge of the disease, sharing of same, and more than anything, their friendship and understanding...   I PROUDLY introduce them

(NOTE to the reader.  COPDer's refer to their lung function capacity by their FEV1 number and all were originally written in 2005, with updates  7+ years later)

From John O To You 

In 2005.....

 

       "I  have lived  with COPD for  27  years." 
 
        As a child I was never what you'd call in great health. I was underweight, had asthma and allergies (which no one really knew how to treat back then) and was just generally sick a lot more than the average kid.  My parents were both heavy drinkers and smokers, two habits I was all too happy to get into when I reached my teens. I was smoking more than two packs a day, often lighting one from another, until, at 36, I was inspired by my brother, who had quit, to follow his example. And did, cold turkey, before the gum and patches and other aids had made their appearance. 
 
        Even quitting at that relatively young age (this was in 1974) it wasn't soon enough. Added to what I think some day will turn out to be genetic markers for COPD I was already having symptoms of sob, which I routinely rationalized and denied (didn't everyone in their late 30s get out of breath climbing stairs, or playing sports?) Six years later, in 1980, I had some chest tightness and went to a doctor.  He (he was about 80) took an x-ray and told me that other than "a little emphysema" I was fine, not to worry.
 
        I was shocked. What did he mean, "a little emphysema"? And not to worry about it. I didn't get much sleep that night, and the next morning started calling around for a second opinion. The next doc was a pulmonologist (the first guy hadn't been) and correctly told me I had COPD, explained what it was, told me it was incurable but manageable, and prescribed an Alupent inhaler, an early version of albuterol. Said to check back with him. I kept this doctor for the next 22 years. Meanwhile my breathing got seriously worse, and to this day I don't know why. But after trying Atrovent, Vanceril, theophylline, and finally the dreaded prednisone,  by the end of the year I was in the hospital, with the usual IVs antibiotics and steroids. Maybe it was pneumonia--I don't really remember. Thing was, I was really bummed out. At 43, even after doing the right thing by quitting smoking, it seemed like my life was just about over.  
 
        But here's the amazing thing: for the next 15 years, except for the occasional head cold, I was never sick. And though I had an exacerbation, treated at home with antis and pred, in 1995, after that, until 2002, I was mostly OK, and lived an active life, traveling, working and enjoying a variety of activities. COPD didn't keep my wife and I from traveling, to most of the US and all the Canadian provinces, in the late 90's.
 
        But then I got sick in that same year (2002), and went to the hospital, and again, twice, in 2003, and again in 2004 and 2006, all hospital stays, as well as numerous exacerbations in between.  As recently as the summer of 2001, I was hiking in the Canadian Rockies with just a pocketful of inhalers.   SOB (shortness of breath)? Sure, but manageable. And now this--O2 around the clock, pred (prednisone) most of the time, I even had Levaquin break my Achilles tendon in '03, and couldn't really walk for weeks.
 
        By that time I was in my mid-60s--how to explain this radical decline? I came to the conclusion that I was thoughtlessly exposing myself to germs and that as I got sicker my immunity to the diseases that the germs carried got whittled down--a vicious circle. Example: my wife and I volunteered in the public school system, putting on programs during the school year, many of them in the wintertime.
 
        I'll put it in the words of a nurse I had:  "You were around hundreds of small children. In a public school. In the winter.... Hello!!!" This is just the worst of many examples. After getting junked up for months in the early part of 2006, ending in yet another trip to the hospital, I decided to simply avoid many situations involving any real numbers of people. That meant giving up the gym and working out at home; going to movies and other events at non peak times. Same with shopping. But here's another important thing: no doctor gave me any of these tips. I got them from other COPDers on online forums. Sharing experiences with others who have been through the same things I have has helped me deal with the disease immensely. 
 
        Today?   It's been 15 months since I've been in the hospital or had an exacerbation, and almost a year since I've had any prednisone. I feel better than at any time since '03 or so, and just turned 70. I live an active life, taking my LOX portable whenever I go out. I publish a newsletter in my neighborhood and am learning to play the piano. The forums have showed me by the examples of many of their members that life is not over because of COPD, even if you're getting older. Keeping active with a daily exercise program will go a long way to creating a positive attitude; and the attitude, in turn, keeps me part of the larger world around me. I try not to dwell on the fact that I have COPD, but I don't forget it either, and the adjustments one needs to make with it, and that I've had to make through trial and error for the last 27 years. 
 

        You CAN do this too.  But; you've got to want it.  I hope you will.

       
John O.
 

An Update from John O,   

August 2012 (7 years later)

            Well, it's 7 years later, and I just tried to blow out 75 candles a couple of weeks ago. A little older , a little slower, and a few more tales to tell. 2007 and 2008 were fairly uneventful, but 2009...

            On April 1 I suffered a pneumothorax in my right lung, which required an ambulance response and immediate surgery. Pneumothorax, or collapsed lung, is as you know a situation where an opening in the pleura occurs and air leaks into the chest cavity. It can be a relatively minor affair, or a major blowout such as I had, where the whole lining of my right lung folded into the middle of my chest. On the way to the hospital I had a pulse ox of 54. In the e.r. they inserted a tube through my armpit into the pleura to start to drain it. Four days later (they kept me) they did a more substantial operation where they sclerosed (think 'glued') the pleura back together, the drainage having been completed. They can do this with a variety of agents, and with me they used hot doxycycline. It was the most painful thing I've ever experienced. 


            I recovered my breathing very slowly--a week later I'd desaturated  to the 70s on 6 liters of O2 in a walk of 50 feet or less.

            I did 14 days on an intermediate care floor and another 14 in a "rehab" facility, which as you also are probably aware is a nursing home with a smattering of "rehab" type activities. But a couple of weeks after getting home I was doing pretty well, resuming my exercise routines, eating well, and so on. But back to the e.r. for a moment: they happened to be working on me in front of a med school class, so I got a free lecture; and among the things the doc said was
that after you had one of these blowouts there was a more than 50% chance of another one down the line. And after the second on a 75% of a third, and so on. Some of these could be fatal, but of course so could anything, given my age and history. Well, sometime a week or so later, and still pretty loopy on morphine, I found Peggy and myself talking to a hospice counselor, and once my records had been examined and my pulmo gave his OK, I was a hospice patient!  

            Even once I'd transferred to the "nursing home" I began to wonder if, instead of declining, I was improving, the way one would expect after an admittedly rough couple of weeks; but what did I know? I felt the threat of a second pneumothorax looming above me. But my breathing started to improve as well. Counselors came out to the house, at first twice a week--a nurse and a social worker. We talked about end of life options, paperwork that we should be doing. The social worker told me how to get a DNR bracelet. The nurse took my blood pressure and asked how my bowels were doing. This went on and not much else happened. They cut the visits to one a week. The social worker took Peggy aside to talk about caregiving and widowhood. It was all a little strange. Meanwhile I had a grand mal seizure and a bout of diverticulitis, both requiring overnight stays. No problem with hospice. Of course Medicare paid for it either way. And I went home. They say once you've had one of these there's a 50% chance of another--but I never have.

            After six months hospice care determined I no longer needed their services, and I was discharged. I'm told that about 15% of hospice patients go this route. And at least in the US, (I’m an American) you can get back in at a future date if your circumstances warrant it.

            Today I'm puffing along with an FEV1 of 22% and need 5-6 liters of O2 to get around. But hey....it beats the alternative, as they say.  

            As far as having MY say, there you have it; and thanks to Jackie, who gave me this opportunity.  Come visit me at http://members.boardhost.com/COPD/    

John O.

 

With Love From WendyCO....

2005 and updated 7 years later, 2012

        "When I first found out I had COPD my FEV1 was 34%, now it's 20%.It’s been almost 10 years ago that I was diagnosed with this disease COPD. I never had heard the word before and sure didn’t have a clue what it meant other than the fact I thought I might as well curl up into a ball and die. 

        It took me a while to believe deep down that this was not a death sentence, that I could live a “good” life…and I do…..maybe not as active as I once was but I am still around to enjoy my kids and grandkids, and the seasons, and the holidays, and the sunsets, and the sunrises and the birds flying and the chatter of friends, and the sound of rushing water while hiking.....and all the things I may have done before but now a little slower……I could have listed so many things but hopefully you get the idea….Life goes on and so do you.

        I work a little harder at exercise than before and it truly can take my breath away LOL, but it also gives me the strength to breath easier….

        If I could only give one piece of advice it would be to learn all you can and listen to what everyone with the disease has to say…sort through it and find what works or you and throw out the rest of it….

        And while on this journey of life, don’t forget to live!

7 Years Later, September 2012

It’s hard to believe it’s been seven years since I first wrote about my COPD for newly diagnosed.  Many things have changed yet most remain the same.

I had LVRS almost 3 years ago and my results were mixed.  I also had a chest wall hernia repair so it is quite possible to have surgery with less lung capacity and get through it well.

Although my “numbers” have dropped quite a bit I do most everything I had been doing so many years ago.  Especially helping to take care of my grandkids.

My advice to anyone reading this would be to keep moving; however you can, and for as long as you can.  Baby steps work too, but just keep doing it.  Be honest with your doctor and not afraid to ask questions, this should be a team effort; it’s your life at stake.  If your doctor gives you little hope, find another as quickly as you can.  You can continue with a fulfilling life, perhaps a bit slower than and not as chaotic as before but very precious.

Relax and remember to laugh often, not only is it good for the soul, it helps our breathing.  And never, ever give up!!

 

 

From LindaMT to you in 2005.... 

(and updated 7 years later)

      My story: You can still have a very good quality of life.

In 1994-96 I was having some nasty asthmatic bronchitis attacks when ever I got a chest cold. Finally after finding a good Asthma/Allergy specialist, I was diagnosed with moderate COPD and severe asthma.

Over the years my FEV1 has gone from 50% to 30% but may have not declined as fast had I taken the doctors advice and quit smoking sooner than I did. ( I quit 19 months ago. ::) )

My advice to all newly diagnosed is to find the best Pulmonary specialist you can find. If necessary, interview several. Don't just settle.

Do your homework and research and know this disease and it's treatments like the back of your hand and insist on trying them. When you find one that makes YOU feel the best insist on continuing it.

Quit smoking at once. Your very life depends on it.

Don't let yourself slip into self pity. Fight like hell against this and, do NOT play the invalid because you aren't one.

This is not an immediate death sentence, but you may need to make small adjustments in the way you once did things. Just slow it down a bit and enjoy every minute of your very precious life.

 

Updated August 2012;   7 Years Later....

I'm doing exceptionally well but just very busy; even my pulmo is surprised that my lung function hasn't deteriorated nearly as much as is the norm. Perhaps it's my attitude and the fact that I refuse to let this disease turn me into an invalid. I push and push myself, even if I am feeling like hell.

There has been a very recent medication change...from Foradil to Sympicort starting today , more for my convenience. It's nice to get rid of one med and have the same benefit from two combined.

I did get rid of Pulmicort 6 months and changed to Qvar. I do feel that works better for me. So now it's going to be used only when I feel an infection coming on.

 

A Couple More Letters to you

This page was last  last updated July, 2013

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

                                                                          

                                                                      

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