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Sick Lungs Don't Show

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Lung Transplant Ctrs in Canada

 

Meet Melody (pre transplant ) The Waiting

 

Post Transplant Q's &A's of Melody

 

Follow a Couple of Tx Patients on Their Journey

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

2005 - 2015

Just Between Us

............a Couple of More Letters..

To You From Vic:

A welcome to Newly Diagnosed COPD’ers. I was diagnosed with COPD in June of 1997. I did the best thing I could do to help myself, I quit smoking cold-turkey. COPD was a tough pill to swallow and I even suffered mood swings because of it. To me it was the end.

I went plodding along just feeling sorry for myself. Then, one day I found a COPD Forum on the Internet. A new world opened up to me as I found I was not alone and, further, here I found hundreds of folks with the same COPD, and many worse than I was, living a full life in spite of it all. I became active in the Forum and learned a great deal about the disease and soon found out that the diagnosis was not the end of my world. Eventually, I started living a fuller life and my outlooks changed.

The answer for Newly Diagnosed folks is to hook up to a forum, or two, or three and become active and you will find that it’s still a good life…and you can even enjoy your new-found friends. Chin up, face the problem and conquer it, but first, above all…stop smoking. Good luck and God bless. -- Vic

From Jackie Whitaker  (Blossom):

(updated 8 years later)

 

          Boy you must be scared; I know I was when I was diagnosed in 2004.  My first week was a week of Hell internally. My FEV 1 was 38%, thought the Grim Reaper would  soon be there for me.  I had a GP that I'm sure was in the 25% in our province who discriminates against current and former smokers and offered no meds other than the old blue puffer. He dropped the bomb and sent me away. What a jerk he was. 

        And; I felt soooooooo alone and I was scared to death!

        Well;  I took a week to research then made an appointment for a consult because I "wasn't satisfied." I asked for and got a flu shot and pneumonia vaccine (it wasn't initially offered), insisted on a PFT, then saw a specialist, got on the right meds and searched out a new family Dr. 

        My saving grace was the Internet, forums  and acquired KNOWLEDGE.

        I do everything I did before and in some things a bit more and yes  your life will change a bit but you'd have to make some adjustments just getting older wouldn't you?

 

        No; your life is far from over and giving in and giving up isn't an option.

 

        Once you get over the initial shock and maybe anger, take stock of yourself and what you can do to help yourself.  Exercise (I can't stress this enough); do something, talk about your disease (just don't bore folks to tears), contact your MP and minister of health, get out and about, get educated, take part in the forums; get involved, SPEAK OUT!

 

        Above all.....remember......YOU AREN'T ALONE!  We're all in this together. God Bless.

 

                                                               Jackie Whitaker ( aka Blossom)

 

Updated June 2013 (7 years later)

 

It's hard to believe it's been 9 years since my diagnosis and 7 since I wrote the above.   A lot of water under the bridge since then!

 

Out of sheer frustration at that time (in 2004) due to lack of Canadian information for COPD patients, I built this website and uploaded it to the internet for World COPD Day in 2005. (I never mentioned it when I did the original note to you here)

 

In the spring of 2007, I took over a newly opened message board forum that was in the process of being built for a COPD friend who; sadly passed away a few months later (in the early summer).   Late summer of that same year,  and with the help of a few likeminded  patients,  I founded a national registered charity for COPD.  This one.

 

In the early autumn of 2007, I  was diagnosed with lung cancer and because I was in pretty good shape physically and psychologically, I  opted for surgery and I had a lobectomy (of my upper right lobe).  Recovery didn't go so well and the seven days I was anticipating to be in the hospital,  turned out to be 7 weeks.  Five weeks in ICU, six plus weeks on a vent.  Two weeks in a step down unit. 

 

Christmas Eve I was released and my true recovery began at home.  Starting with med weaning and exercise.  Like a baby; I had to start all over again and with less to work with. But I did and delved back into things.  Eleven months later, I still organized and walked in our "Lungevity Walk"  5 miles (yes miles; not km!) and did one of my best times!

 

In 2010 I went into respiratory failure, ended up again on a vent in ICU.  Fortunately I was released 10 days later.  Then recovery began again at home.  It was a lot harder this time and took longer but.... I did it!

 

In 2012   I stepped down from the Board of Directors and as President of this charity.  I had been diagnosed again with lung cancer. Chemotherapy, radiation and certainly surgery; isn't an option.

 

It's now 2013.  I'm still plugging away!

 

I fish, when the weather's cooperative, I walk; not as much as I did but... I still do!  I still love driving my Mustang, I'm still the webmistress here and though I update this site weekly, I'm currently working on updating all the pages.  I'm still the Administrator of the forum/message board, I help the Board of Directors for this charity when needed/requested,  I'm still an advocate but, most important of all, I still get to help other COPD patients and clinicians both directly and indirectly.

 

I continue to learn about this disease because new information, knowledge and understanding has certainly become more frequent.

 

I've lost some good COPD friends along the way; but I've made many as well.

 

If I could give you, even today, three pieces of advice it would be....

 

Exercise and

Stay informed about this disease and

Don't waste time on the past; enjoy life and living today!

 

I still do!!!

 

Hmmmm; I guess there's a fourth after all....

Use it or loose it!

 

Easy Breathing,

Jackie (Blossom)

 

 

Finally From LarryNZ;   

The day Larry was diagnosed with COPD he seriously wondered whether to buy himself the new pair of shoes he had planned on or if he wouldn’t be needing shoes for much longer.

“The doctor was quite negative, saying there was no cure, I was too old for a transplant, so all I could do was to go to rehab.”
‘The first sign of trouble was in 1989, when I was admitted to hospital with breathing problems. I was diagnosed with asthma treated and sent home after three days.”
Larry was given asthma medication to control his symptoms but his breathing problems persisted. He quit smoking in 2000, nearly 50 years after he started, but his health continued to deteriorate.
In 2002, he was diagnosed with COPD,  with 37%of normal lung function. With almost no information, the diagnosis was frightening.

It was six months later, when he started pulmonary rehabilitation, that he finally got the information he needed to start fighting back.
“It was excellent. It is all about education-the causes of COPD, how to avoid making it worse, learning about the medicines, exercise, diet. It’s no cure, but it allows you to make the best of things.”
“I have restrictions on my abilities. I walk slower than I used to, I can’t hurry and any sort of slope is like a big hill. A cold wind stops me in my tracks, and I get tired very easily.
“Now I do everything I can to stay active. I walk a lot every day, and I have a dog that likes walking too, so if I forget she reminds me. I use light dumbbells to maintain upper body strength.
“I also have antibiotics on stand-by at home. We have a saying that ‘sick lungs don’t show’. Often the people around you don’t understand how much energy you burn up just to breathe. On the internet there are people just like me, who experience the same things.  You're NOT alone!"

Webmistess NoteSadly Larry NZ lost his battle.  He developed ALS and  passed away April 20th, 2010

 

Note:  All of these people frequent several COPD forums to learn and share with fellow COPDer's. You're always welcome at any or all.

 

This page was last  last updated July, 2013

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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