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 12 STEPS TOWARD A MEDICAL "MIRACLE"
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Dave-OH
Administrator

USA
3404 Posts

Posted - Dec 25 2007 :  12:32:08 PM  Show Profile  Reply with Quote
I ran across this trying to find something that would help us all no matter what stage of COPD we are in. What I would like to do because this is a support group and that means we all ask and answer questions to the best of our abilities, is to read this over and share with everyone what you have done or what you can do in the future to help yourself to a "Medical Miracle"

Please make it reply all and then answer by number. You may have to delete the original post because we only can post so much per letter and I would hate to have anyone get a rejection notice because of size of letter. So here goes and I hope to see some answers in the next day or so.

Take Care
Carolyn Mi




12 STEPS TOWARD A MEDICAL "MIRACLE"


If you or someone you love is diagnosed with a life-threatening illness, here are the positive steps you can take to insure the best outcome possible. They don't add up to a guarantee, of course. There are no guarantees in medicine. But that's actually good news for people with a serious illness: Maybe you can't be absolutely certain that the best will happen, but you also can't be certain -- no matter what your doctor says --that the worst will happen.

1 Take Control of Your Illness. You may think you're helpless, but you're not. Take control of your life back with a combination of information and attitude. Be a part of every decision about your treatment. Resist the urge to leave it all in your doctor's hands.

2 Insist on Options. Forget about second opinions. Look instead for second options. There are no absolutes in medicine, no inevitabilities. There are multiple solutions to every problem. You just have to find them. Don't be afraid of choices; embrace them.

3 Find the Right Doctor. Not all doctors are created equal. When you're seriously ill, it's worth the extra effort to find the best one for your condition. It can make the difference, literally, between life and death.

4 Build A Partnership With Your Doctor. A true partnership means there are special responsibilities on both sides. Your part is to be informed about your illness so you can ask questions -- you can never ask too many questions. Your doctor's part is to answer them all, fully and patiently.

5 Recognize That All Medical Decisions Are Trade-offs. Again, there are no right answers. Every decision regarding medical treatments
involves weighing costs against benefits. To strike the right balance for you (everybody's balance is different) get all the information you can, then look carefully inside yourself and decide what really matters.

6 Sustain A Claim to Life. A good attitude -- call it optimism or "fighting spirit" or whatever isn't enough, no matter how positive. You have to do something. A will to live has to be accompanied by a commitment to living: join a support group, make plans,set goals; "renew your membership in life."

7 Find An Advocate (Or Be Your Own). In a managed care environment, getting the best care can be a struggle. You can end up fighting your doctor as well as your illness. If you haven't got enough fight to go around, enlist an advocate to do the fighting for you.

8 Subdue The Enemy Within. Sooner or later, you'll hear a voice question: "Why Me?" Learn to recognize self-pity and resist it. Question whatever bothers you; don't let this one. Not now. Another feeling to resist: guilt. Yes, loved ones are going through hell, but it's not your fault.

9 Build A Support Network. You absolutely cannot get through this alone. You have to depend on people. Family, friends, caregivers, support groups, strangers, it doesn't matter, as long as it's somebody. But don't expect more of people than is reasonable. Don't expect family or friends to change just because you're sick. Don't expect yourself to change.

10 Don't Let The Disease -- Or The Treatment -- Change Who You Are. Don't let the "I'm Still Here!" syndrome get the better of you. Denial and surrender are bad, but survival at any cost is also dangerous, just in a different way. If the disease, or the treatment, changes who you are, then you've lost the battle anyway.

11 Know When To Draw The Line. There's a line beyond which the price of survival is just too high, a line between what is worth fighting for, and what is not. Thresholds of pain vary, as well as thresholds of fear and uncertainty. Doctors often draw this line for patients; draw it for yourself.

12 Never Say Never. Everybody reacts to disease differently. Every body reacts to drugs and treatment differently. Every doctor has had patients who defied all the medical textbooks and prognoses. They've all seen "hopeless" cases turn around. For all the advancements in medical knowledge, the human body remains wondrous strange-- and full of surprises.

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

Adina-OH
Member

USA
267 Posts

Posted - Dec 29 2007 :  06:48:25 AM  Show Profile  Reply with Quote
Hi all,

First, I'm the "resident stickler" for this kind of detail; i.e., the source of this terrific treatise. As a brief preface to the 12 steps: "While part of last night was spent in mostly trying to get some air moving thru me, some of the time was spent in pursuit of my mind games and reading to affirm them. I would like to share some positive words with you that hopefully will lift you in your moments of distress." ~ From Making Miracles Happen by Gregory White Smith

This is a great list. One of the steps I really like is No. 2 - considering options, not just getting second opinions. I think it's a good reminder that there is always more than one way to confront any problem or situation. Jerome Groopman, MD backs this up beautifully in his book, How Doctors Think. And I just went through this process in depth when I started exploring Biologic Lung Volume Reduction (BLVR), which I ended up having on Dec. 19. That decision led to No. 3 for me, finding a MUCH better pulmonologist than I had - top drawer, in fact.

Edited by - Adina-OH on Dec 29 2007 06:50:06 AM
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Donna
Rookie

USA
1 Posts

Posted - Jan 25 2008 :  8:33:59 PM  Show Profile  Reply with Quote
I am a newbie here, but I do like this list. The one that sticks out to me is #7 being your own advocate. I had a wonderful friend tell me this and thus I took charge and when I was told at the age of 39 that I had COPD/Emphysema and I only had a short smoking history in high school, more of a wantabe smoker :) I couldn't see how this was so. The doc told me there was no rhyme or reason why I had it, with smokes in his pocket :( grr.... I went to the net and found Alpha 1 Antitrypsin. I had to ask him 4 times to test me for it. He was in shock that I had it. Alpha says it isn't so rare, but rarely tested. So anyway, doctors are human and we do need to look out for ourselves. We are the ones the know best how we feel etc.
Donna
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mommanessy247
Rookie

10 Posts

Posted - Aug 21 2009 :  07:05:44 AM  Show Profile  Reply with Quote
wow i cried as i read that list. It really touches certain spots as you speak out to reassure & comfort those in need. Thanks Dave.
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blueis2385
Rookie

USA
1 Posts

Posted - Sep 04 2009 :  04:44:26 AM  Show Profile  Reply with Quote
quote:
Originally posted by Adina-OH

Hi all,

First, I'm the "resident stickler" for this kind of detail; i.e., the source of this terrific treatise. As a brief preface to the 12 steps: "While part of last night was spent in mostly trying to get some air moving thru me, some of the time was spent in pursuit of my mind games and reading to affirm them. I would like to share some positive words with you that hopefully will lift you in your moments of distress." ~ From Making Miracles Happen by Gregory White Smith

This is a great list. One of the steps I really like is No. 2 - considering options, not just getting second opinions. I think it's a good reminder that there is always more than one way to confront any problem or situation. Jerome Groopman, MD backs this up beautifully in his book, How Doctors Think. And I just went through this process in depth when I started exploring Biologic Lung Volume Reduction (BLVR), which I ended up having on Dec. 19. That decision led to No. 3 for me, finding a MUCH better pulmonologist than I had - top drawer, in fact.

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MTPurple
Rookie

1 Posts

Posted - Sep 04 2009 :  6:14:37 PM  Show Profile  Reply with Quote
thank you for these 12 steps.
My mom was recently diagnosed, so I am trying to learn as much as I can about COPD.
Does anyone know if there are any general "housekeeping" type rules out there for patients with COPD? Like avoiding mold, old paint, and other environmental irritants in a home? I am advocating to get her home interior repainted and recarpeted (its not been done in over 15 years) by her landlord, and/or have her landlord let us do it based on health reasons. She's got a lot of mildew in her bathroom that's not been dealt with either. We have established that there's no toxic mold, so that's helpful, but I need informtion on environmental conditions that will make it easier for her to manage her condition.
I apologize if I rambled.
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PennyPA
Contributing Member

USA
4699 Posts

Posted - Sep 04 2009 :  10:23:59 PM  Show Profile  Reply with Quote
MTPurple, yes, avoiding mold is a must do for anyone, copd or not. But may I make a suggestion? Make sure there's an exhaust fan in the bathroom. Moisture causes mold and mildew and if her bathroom has no ventilation like a window or such, they both will form naturally. Secondly, instead of installing carpeting, see if you can have solid flooring such as wood or laminate installed throughout the house. That would eliminate a lot of hiding places for germs, dust mites, etc. If the MT in your name stands for Montana, you can always use area rugs in the winter to help keep the cold temps at bay.

****************************************************************

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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Carolyn-Mi
Administrator

604 Posts

Posted - Sep 05 2009 :  07:20:25 AM  Show Profile  Reply with Quote
quote:
Originally posted by MTPurple

thank you for these 12 steps.
My mom was recently diagnosed, so I am trying to learn as much as I can about COPD.
Does anyone know if there are any general "housekeeping" type rules out there for patients with COPD? Like avoiding mold, old paint, and other environmental irritants in a home?


I try to avoid as many aresol products as possible when cleaning. I also use a lot of white vinegar, baking soda and peroixide instead of the regualar cleaning products. I have a squirt type bottle filled with white vinegar and water (50/50) for counter tops, windows and such. You can google cleaning with vinegar and then another with baking soda to get more tips on it.

For dusting I use a *swifter* type duster and/or one of the micro clothes. With either one of these the dust sticks to it and doesn't just get knocked into the air.

As to the carpet, paint and mold. If the landlord agrees to the first 2, see if there is somewhere that mom could stay while it is being done and for a couple days after while the *new* smell wears out. New carpeting smells knocked me for a loop when we had it laid, who knew? If this is not possible, then make sure she has plenty of fresh air, cross ventilation etc.

Good luck with all of this.

COPD Support
http://www.copd-support.com
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Anneymay54
Member

USA
33 Posts

Posted - Sep 27 2009 :  08:09:11 AM  Show Profile  Reply with Quote
Number 8 is the one that I am battling with these days. The "you get what you deserve", "you smoke, continue to smoke, so you deserve the consequence". The worst one was from a nurse at the hospital who stated loud enough for every man and their dog to hear was, "I am so glad that I'm not going to die like you will."
I know that I smoked. I know that I continue to smoke, hating myself every time I light the darn thing. Angry every time I buy a pack or carton. I have tried everything I know to quit. My biggest hurdle is one of, "Why worry about it now? It is so bad that it would be like closing the barn door after the horse is already gone." I am working hard to keep a better attitude but it gets to be really hard sometimes.

Annemarie
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Carolyn-Mi
Administrator

604 Posts

Posted - Sep 27 2009 :  09:44:55 AM  Show Profile  Reply with Quote
*It is so bad that it would be like closing the barn door after the horse is already gone." I am working hard to keep a better attitude but it gets to be really hard sometimes.*

I don't know how bad is bad, but quitting now, will make you feel better once the nicotine and residuals are out of your system. It won't cure you but at least you may feel better.

I envy those that said they put them down and that was that, that was NOT me! I struggled for years to quit, I must have quit at least 10x's before it took. Lots of sweat and tears and a hubby that just didn't understand. My Dr kept telling me just don't quit, quitting and you will make it. I finally did and it was before I was Dx'd. So keep on trying.

As for kicking yourself, we can play the blame game till doomsday and it won't change a thing. Try being a bit gentler with yourself, you smoked, you got caught, now is the time to deal with what is, not what I should have done.

COPD Support
http://www.copd-support.com
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Casey-CA
Senior Member

USA
782 Posts

Posted - Sep 27 2009 :  7:39:26 PM  Show Profile  Reply with Quote
You have the power within you to quit Annemarie. It will be the best thing you have ever
done for yourself. You will scream to the rafters that "I did it!"
It is worth the try to just do it.
I really feel it is a mindset that you make and then follow thru. Your body and lungs will
thank you too. It is not too late, as a matter of fact it is the right time for you.
Have faith in yourself and we will be your cheerleaders.

Casey formerly majseventh
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thomwest2634
Member

USA
109 Posts

Posted - Sep 30 2009 :  9:41:21 PM  Show Profile  Reply with Quote
HI: I'm just beginning to accept the severity of my copd (after having used oxygen for 4 years, are you ready?) I have found a support group right down the street where I live (central Florida) and will join it, but this posting group is wonderful for an everyday look-see. I do have other health problems, but the copd is causing me the most discomfort. I'm 75 and have had a good life (compared to some) so don't complain, but I'd like to feel a little better, and these twelve steps and the related comments are most encouraging. I'm pleased to meet you all and hope to drop in frequently. Every little hint helps. Thanks and blessings. Thom
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ruteach
Rookie

USA
3 Posts

Posted - Feb 11 2011 :  12:12:56 PM  Show Profile  Reply with Quote
quote:
Originally posted by Anneymay54

Number 8 is the one that I am battling with these days. The "you get what you deserve", "you smoke, continue to smoke, so you deserve the consequence". The worst one was from a nurse at the hospital who stated loud enough for every man and their dog to hear was, "I am so glad that I'm not going to die like you will."
I know that I smoked. I know that I continue to smoke, hating myself every time I light the darn thing. Angry every time I buy a pack or carton. I have tried everything I know to quit. My biggest hurdle is one of, "Why worry about it now? It is so bad that it would be like closing the barn door after the horse is already gone." I am working hard to keep a better attitude but it gets to be really hard sometimes.

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rosie o.
Rookie

USA
1 Posts

Posted - Sep 26 2011 :  02:53:26 AM  Show Profile  Reply with Quote
I am a newbie tonight. I was diagnosed with COPD about 3 years ago. I have never smoked a day in my life, but have suffered many bouts of bronchitis and bronchial pneumonia. And then I developed Bronchial Asthma, and of course, right into COPD.

Being 65 years old now, I have learned several things over my short lifetime. One of them is the use of a chiropractor to help maintain health. Since I also suffer from severe back pain, a chiropractor has done wonders for me as to my pain scale. What was once up to 9 or 10, is not down to 3 or 4 and is often none existent. I have found that when my back hurts in between my shoulder blades badly, the shortness of breath COPD folks exhibit is very much present. I also have found out over the past 15 years, that when my back hurts in the area like nothing else, that it also affects my chest to the point you think you are having a heart attack.

Having been tested at the hospital for the later, they found my heart to be perfectly fine, so it has to be from my back, and strangely enough, the doctors at the hospital agreed with my self diagnosis--see a chiropractor, if he helps continue the regimen.

What does this have to do with COPD? Sometimes, back pain can be the culprit putting extra stress on the body that it does not need, which in turn causes the inflammation to kick in that causes COPD. Straighten the problem out, and COPD improves.

There is also another item I found out too. About 5 years ago, my husband's company that he retired from dropped the health insurance of its retirees. Being already ill, that drove our premiums up to where we could not afford the insurance. So I turned to alternative medicine--vitamins and minerals. Before then, I was always in the hospital at least once a year for pneumonia or being treated for three or four cases of several bronchitis each year. So, now I was faced with no way to pay for medicine or doctors, definitely not both. I found a neat little product called liquid oxygen--use 7 to 10 drops in water--has no taste and no color. What that does--the oxygen attaches to body cells giving each cell a little more oxygen with which to work. It helped considerable. And it is about $17 a bottle and it lasts for about 6 months. A second product I found because a lot sinus is also a problem that makes COPD worse--it is very aggravating to the lungs, etc. Lung and sinus support helps very much as well. And of course a good multiple vitamin does wonders and an immune boost. The last two years I have not had one case of bronchitis, not even a mild one. The year before that I had pneumonia which lasted for about 10 days--previously, my pneumonias lasted for 6 weeks. Everything that is bad has been weakened so I am not sick as often, and when I am three days and I am good as new.

So if you are game and aren't feeling any better check out alternative treatments. They may help and have little to no side effects, you feel a lot better, and have energy to burn.

Frances Foland
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PennyPA
Contributing Member

USA
4699 Posts

Posted - Sep 26 2011 :  10:33:06 AM  Show Profile  Reply with Quote
Frances, that's a very astute story ... about pain increasing sob ... and it is very true. However, neither pain nor sinus problems cause copd nor can they cause an increase in the copd. They can and often do cause an increase in sob.

COPD has 2 main compenents which are emphysema and chronic bronchitis (which you say you have). Some doctors include asthma under that umbrella, too, although it's primarily a restrictive disease. There are several other diseases under the copd umbrella but I don't believe they're as common as the emphysema and chronic bronchitis.

And since you've not had one case of bronchitis in the last two years, it does sound like you no longer have copd. You are a lucky person indeed.

****************************************************************

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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sassysue08
Member

29 Posts

Posted - Nov 03 2011 :  4:08:41 PM  Show Profile  Reply with Quote
hi anne-marie- I had the same experience in the hospital,the nurses ,some were very rude and unsupportive,when in all reality they have abused their body at some time,whether it be drinking or what. I had a women in my pulmonary group that had quit smoking 17 years ago and developed copd,so... when I first was diagnosed back in 2001, nobody told me what would happen in the future that it would get worse in time.I had a cold and had surgury and landed back in the hospital with pnuemonia thats when they told me. before all of that I could walk 5 miles with out sob. just doesnt make sense sometimes

lynn laura
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sassysue08
Member

29 Posts

Posted - Nov 03 2011 :  4:14:20 PM  Show Profile  Reply with Quote
francis- where do you get the liqiud oxygen if you dont mind me asking?

lynn laura
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Sandy07
Member

Canada
376 Posts

Posted - Nov 04 2011 :  6:05:29 PM  Show Profile  Reply with Quote
Health Food Stores carry it.
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Dave-OH
Administrator

USA
3404 Posts

Posted - Nov 04 2011 :  9:05:03 PM  Show Profile  Reply with Quote
I do not know how they can call it Liquid Oxygen, as it is not O2 in a LOX format. And there is not science behind the statement it binds to the O2 receptors. The only thing it could be is Hydrogen Peroxide, and that is dangerous to consume.

There is nothing about O2 that this product could be and it is a complete scam and waste of money.


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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Bob-il
Rookie

USA
1 Posts

Posted - Nov 22 2011 :  4:05:15 PM  Show Profile  Reply with Quote
I truly believe that number 6 is the most important all of the information is important on how we manage our COPD But Sustain A Claim to Life. A good attitude will is what pulls it all together. Its something no one else can do for us. We have to reach inside ourselves and find that desire to be here and live life , not just survive but live life its fullness. I have Been severe COPD since 2002
and was surviving , did many hospital trips , a lot ICU and even a lung cancer fight. But I was home bound spent most my time in bed or sitting in front of TV. Could not hardly do anything no wind and yes on o2 and still smoking. Then in 2009 took a fall, broke my hip, was retaining co2 spent a stay in ICU on non invasive vent.And spent almost 3 weeks in hospital. Came out new out look.....No smoking started exercising and I have my life back , I do things with my kids, I work in my garden , I drive again and I even go to all my grand-kids school deals lol. Yes I am living not just surviving. Will I live longer now? I don't know and don't care because I enjoy getting up again. My doctors have been amazed on how much I have turned around. Nothing changed same medications, same o2, and My fev 1 a little better but mainly from exercise. What changed was me, I stopped asking why me. I stopped thinking the damage was already done, I stopped waiting to die and I started wanting to live. I not saying change in outlook will help everyone as much as it helped me but what i am saying is it wont hurt. Even if it changes nothing more then having a smile instead a frown you will feel better.Get involved with people again heck scared of the germs then join us in the chat room we talk about everything copd and everything else , our grand-kids , exchange recipes or just check on the weather.remember
I ain't no doctor.. or English teacher.. just a guy getting by Bob-IL

Slowing down only means you have more time to enjoy what you are doing, and realize what you have missed!
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Rainbow117
Member

USA
98 Posts

Posted - Mar 23 2013 :  3:58:27 PM  Show Profile  Reply with Quote
Bob, can you bottle all that and sell it? I'm trying to do all those things. Am not as successful as you, but I'm convinced that it all adds up to a better life. You go!!
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Wendy-PQ
Rookie

Canada
2 Posts

Posted - May 05 2013 :  7:53:34 PM  Show Profile  Reply with Quote
Bob, you are an inspiration. I believe as well that attitude matters A LOT! Thank you for posting your uplifting message.
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arwinarwin
Member

USA
136 Posts

Posted - Jun 21 2013 :  8:29:46 PM  Show Profile  Reply with Quote
Thank you for this from reading this i have learned some things i need to check into about my copd i learned about it too years ago i worked myself up to doing workouts for 30 min a day and i walk for a hour a day also i am on the oxygen 24/7 should i live alone with copd i dont know what to look for about this yet.
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regaljan
Rookie

13 Posts

Posted - Aug 29 2013 :  3:51:53 PM  Show Profile  Reply with Quote
Great list! #10 is somewhat scary...this disease does change who you are. But, it also wakens a part of you...the part that holds your "bucket list" so to speak. Now I'm going to try to print out a copy so I can keep it in mind! Thanks for the post!
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Dave-OH
Administrator

USA
3404 Posts

Posted - Sep 02 2013 :  11:40:07 PM  Show Profile  Reply with Quote
Please do not post anything that is not directly related to the list. It will be removed.

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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