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my lung disease 
Started by tacos
14 Mar 2012, 8:05 PM

I have COPD and bronchiectasis diagnosed 9 years ago. 
I have been on oxygen for over 2 years.
I cough about 2 - 300 times a day to remove mucus from my lungs.
I am on 9 medications and use several machines to help me breathe.
I think I have 3 to 5 years to live.
I'm wondering if there are people out there who are in a more advanced condition
than I am who could tell me what to expect during the next couple of years.  
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Reply by moderator | modératrice
15 Mar 2012, 2:08 PM

Hi tacos,

Welcome to Virtual Hospice. Your request is exactly the type of exchange we hope to have on our forums. At the moment, there's no one talking about COPD on the forums, but I am actively looking for people to join this discussion.

In the meantime, you may want to read the responses from our clinical team to Ask a Professional questions about Respiratory Disease

Thanks for getting this conversation started. 
Talk soon,
Colleen 
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Reply by kathykastner
18 Mar 2012, 1:32 PM

Hi Tacos, 
I think you are brave and courageous and I am full of admiration that you've reached out.

My husband has COPD - alrhough in its early stage, and isn't (yet) living his life around restrictions, as you are - so  I am not in a position to answer your question.

But, I wondered if you'd be open to answering some of mine, so that I can be a better 'partner'.
- Do you ever feel you have to 'manage' feeling/actions or take care of those around you? In my guy's case, he's a smoker. While I intellectually get how impossibly hard it is to quit, I still feel angry, frustrated, resentful (and then I feel guilty!)
- How do you keep your spirits up and what would you like those around you to do to help.
- Has COPD and knowledge of your own life expectancy affected the way you think about life, and would you like those around you to think of life differently

If these questions feel like an impostion or evoke too many emotions then please don't even think about answering... I recently saw a comment on twitter about COPD: 'it's not just a lung disease it's a debilitating assault on your whole body.'

Sending good karma.
Kathy


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Reply by moderator | modératrice
19 Mar 2012, 4:35 PM

Tacos, in my search for someone with COPD to join this discussion thread I came upon not one person, but rather a whole community. Do you know about the COPD Canada Patient Network www.copdcanada.ca

In addition to easy-to-understand information about living with COPD, they have an active Message Board.

I spoke with the President of the COPD Canada Patient Network and she said that there are several members of their forum who have more advanced condition. I've invited Jackie to post here and direct you to specific threads to help get you started. 

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Reply by Blossom
20 Mar 2012, 10:35 PM

Hi Tacos;

I'm, not sure you'll will see this since I note the date of your first post and there's been nothing since then.  However; Colleen was quite concerned, sought us out and invited me to post here hoping that our group might be of benefit in some small way.

My name is Jackie Whitaker; on the forums I'm known as Blossom.  I have Stage lV COPD (in my case it's chronic bronchitis and emphysema),  I’ve a small area of Bronchiectasis, and I've lost a lobe of my lung to cancer.

I walk, I fish, I garden (to a degree; the bending over is difficult as I'm sure you're aware lol),  I run a national charity (COPD Canada Patient Network) and am the Admin of a forum/message board (COPD in Canada) of which Colleen spoke.  I'm an advocate but I’m not unique.  Most important; I'm a patient just like you and many others.


You didn't mention any numbers (FEV1) or your stage, nor your litres of oxygen or if you have any other medical issues.   With 9 meds, I suspect you do. Do you have frequent exacerbations?  Hopefully you're mobile and hopefully you are aware of the need to exercise.  That is paramount.  Even a step or two when you start, then slowly add another and another.... 

As you can see;  I'm afraid I'd have more questions than answers right now so it's difficult for me to expand on much but...... let me at least say,  in our organization and community you can be assured there's people more advanced than you. 

Some have been on oxygen for 5-10 years easy;  even longer.  Some have gone from being pretty imobile  to exercising/walking daily.  Many have additional medical issues.  A few of our folks are on the transplant waiting list.  But; we all believe in "living with" and learning, and educating ourselves and each other  so that we can have a better quality of life.

How long do you have?  No one has a crystal ball to answer that.  I will tell you however that many COPDer's have lived with their disease for  well over 20 years and are still going…. 

I would like to take this opportunity to invite you to visit, or join, both of our sites.  We would love to get to get to know you better.  There’s a LOT of information on both.  Our members, your peers,  are caring, supportive, knowledgeable and helpful.  And; if they don’t have an answer, they’ll certainly try to point you in the right direction.  We’re all about sharing…


Taco; you’re not alone.  And; I/we, look forward to getting to know you better!


Easy Breathing,


Jackie Whitaker (Blossom)

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Reply by tacos
21 Mar 2012, 4:20 PM

Hi Jackie (Blossom): Thanks for your reply. I'll get right to your questions and ideas.
1 - My FEV numbers - I have no idea, I'll ask my lung specialist.
2 - My oxygen LPM number - Right now it's at 2 daytime & 1.25 night. It's been higher 
in the past, 3 day and 2 night but I have a problem with high CO2 level so I keep the
oxygen as low as possible. I keep my O2S between 88 and 91 as suggested by 
my lung doctor.
3 - I don't have any other medical issues, all the medications relate directly or 
indirectly to the lungs.
4 - re: exacerbations - I get lung infections about every 2 or 3 months. I'm on an 
antibiotic every day. When I get infected I switch to a more powerful antibiotic for
a couple weeks. This usually works, but it didn't twice in the last 14 months, so I
had to go into the hosp. for intervenous antibiotics. 
5 - Yes I exercise daily to a program I learned at West Park Rehab Centre in Toronto.
But walking is difficult as I have to stop every 20 steps and sit for a minute.
My main concern right now is the the mucus in my lungs is so thick and sticky I
have great difficulty coughing it up, and so with all that mucus in my lungs,
they get infected. I will try to visit your sites.  Thanks again, Tacos

 
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Reply by Cath1
21 Mar 2012, 4:53 PM

Hi Tacos and Colleen and Jackie (Blossom) and Kathy:

I must say how impressed I am with the way everyone has responded to you, Taco and it demonstrates to me how caring and resourceful our Virtual Hospice community is when a member is in need. Aren't we all!:)

Taco, I, like Kathy, don't have direct experience with COPD in that I don't have it but my elderly mother was diagnosed with it and fortunately for her it did not cause her a lot of hardship as she suffered very few active symptoms from it. She was a lifelong smoker, as am I, so I am hoping to quit before I too follow that path. I am so happy that you have been given the opportunity to connect with others who are experiencing the same or similar things. Support is crucial no matter what it is we are going through.

You are definitely not alone and I just wanted to add my personal welcome and I want to remind you that we all care about how you are doing and feeling.

Take care.

VHcath      
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Reply by Blossom
21 Mar 2012, 11:00 PM

Tacos;

Gotta say.  Without knowing more about you and your situation I'd be very hesitant to suggest anything. And; that's not what you were originally asking.  You asked about "time" and "living with."

I do hope I was able to plant a seed in your current thinking!

You've been to an extremely good Rehab facility and I'm confident they have a decent program from a coping and educational perspective.

I'm surprised that you would mention CO2 retention (which is unusual from a patient perspective)  then your SPO2 aims/goals/current usage yet;   not not know your FEV1.  How the devil did they ascertain you're a retainer?  Other than when you may have been ill.  On-going ABG's or..... 

Heck.... not all Dr's graduate in the top of their class!  (Not to offend any of the professionals involved here...Smile 

As for the mucus problem.... I understand totally.  Part of the beast of what many of us live with so.... we try different things to help "thin it out".  It too is a learning experience as in what works for "you"  Gotta say though from your first post; I'd die and go to heaven for only having to clearing my lungs a couple/few times a day!Wink

Tacos; ...  I'm just a patient with a (what I like to think) a decent  grasp (from this perspective)  on this disease. 

I wish you well in your journey and your info seek; please remember that you have to be your own advocate.  You have to ask questions and look for answers.  Stats quo isn't good enough. I think even here you can ask questions of professionals.  Haven't tried it myself but, I'm sure it's a good source of info.

You've made a great start! 

Keep moving, keep pushing, keep asking and wanting answers....

Easy Breathing,
Jackie
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Reply by Cath1
22 Mar 2012, 1:38 AM

Hi Blossom:

To clarify: Tacos coughs two to three hundred times a day. I think you must have misread the numbers by your response. I can only imagine how irritating and upsetting that would be when the coughing is on the high end of the spectrum as I am sure you agree.  

It's great that you have a group for people living with COPD because it is a diagnosis that seems to be much more common these days and yet so few people know much about it. It's hard to make the best of any illness without access to good information and support from people who can relate to what we are going through.   

I'm thrilled that you have joined Virtual Hospice and I'm sure your encouraging and resourceful posts are helpful to many people.

Have a great night Jackie and best wishes to you and those in your group as you continue to support one another!:)

VHcath
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Reply by moderator | modératrice
22 Mar 2012, 2:52 AM

Tacos, thanks for starting this conversation. I'd also be interested in your thoughts to Kathy's questions (3rd comment in this thread).

Kathy and VHcath, it looks like not only Tacos will benefit from this discussion about COPD. COPD Canada Patient Network offers a lot of info that may help answer your questions. Thanks for making us aware of this active community and resource Jackie.

VHcath have you considered using Smoker's Helpline to help you with quitting smoking? They offer support by phone, online, texting and even on Twitter. 

Good night.
Colleen 
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