COPD or Asthma, Anyone?

[shiny!]

Hey guys, I'm suddenly deep in the throes of The Medical System (which is like matter and anti-matter colliding) and would like to pick your enormous, squishy frontal lobes if that's OK.

I've been super sick the last month; got a diagnosis of COPD yesterday. Now I'm trying to learn all I can about COPD and asthma, since my symptoms match asthma more than emphysema or bronchitis. Anyone here have any experience with these diseases?

Four and a half weeks ago I suddenly experienced severe shortness of breath and fatigue while working in my garden. Collapsed on the bench unable to catch my breath; barely made it into the house. Went to my doctor a couple of days later where I collapsed in the waiting room from shortness of breath. She sent me to the ER in an ambulance.

The ER was useless as I knew it would be, because that's always my karma with the medical system. The ER doc said I wasn't having a heart attack and released me to go home. I could hardly breathe, talk or stand up to get dressed. Between gasps I asked her what could be causing my shortness of breath. She said she had no idea and walked out.

In the intervening weeks I've had EKGs (normal), a cardiac sonogram (normal), and a full pulmonary function test (85% of normal). If the PFT had happened a couple of weeks sooner it would have been a lot worse.

Yesterday the pulmonologist told me I have COPD. I've never been a smoker or lived with smokers. But all my life I've gotten short of breath and fatigued from running a few yards or even just walking up a flight of stairs. I can lift weights but can't build up any aerobic capacity. None of my doctors ever thought of asthma. They just said I was lazy. I've probably had exercise-induced asthma all my life but never knew it.

Apparently what happened last month was a bad flare-up of some kind. Now being short of breath isn't just exercise-induced, it's all the time, and it's wearing me out.

The pulmonologist said it doesn't matter if it's COPD or asthma specifically, since it's all treated the same way. He gave me some inhalers and said to come back in three months. He was in and out the door in five minutes.

That was it. No counseling or advice for how to live with this, how to prevent another flare or what to do if it happens again. So now I'm trying to come to terms and learn all I can. I learned that respiratory therapy can teach me how to breathe easier, so today I asked my PCP for a referral. She liked that idea and is going to work on it.

I'm not asking for professional medical advice, but do any of you have any suggestions? Tips or tricks for living with this? Good books or websites that go beyond "take your medicine"? I want to get up to speed fast but don't know what's possible or even what questions to ask. Unless I specifically ask these doctors for something they won't think of it on their own.

I hope this wasn't too long or inappropriate. Thanks for listening.

[vt]

Re: COPD or Asthma, Anyone?

Shiny,

I've never smoked or lived with smokers, but did have asthma for a time a couple of years ago. I had inhalers for about 9 months.

I had a blood test for allergies, called an Elisa test.

http://www.webmd.com/allergies/guide/blood-test

This test proved much more useful than the pin pricks on the back an allergist normally does. It showed me what foods and environmental allergies I really had so I could avoid them. No more inhalers, no more asthma.

All allergy problems are different, as are individual's body chemistry. I hope this helps.

[jpetr48]

Re: COPD or Asthma, Anyone?

First, I am so sorry to learn of your condition and as before will be praying for your health.
This may not be exact but my experience with COPD was thru one of our dogs. Yes, I know dogs and humans are different however some of the best resesearched remedies I have used on my dogs, have worked well for my wife and me.
COPD is progressive. Don't know if you have had problem sleeping yet but something that I found to be most effective was chicken soup. Not Campbell chicken soup rather buying a whole chicken and then taking the broth from extended cooking time- I recall using crock pot.
Second, I would research PubMed and enter COPD. You don't have to be a doctor to read. Try and skim the abstract and look at conclusion. PM me if I can help interpret- not a doctor but I do have a science background
Third- get the US News World Report Top Hospitals edition from your library. Look under Pulmonology. Typically you will find the best research oriented hospitals in this specialty. While it may be difficult to get to based on where you live- you can always call and ask for referrals

The best thing you are doing is your own research. I would actually trust that more than a top hospital doctor from my own personal experience. The life threatening disease we discovered in my wife in early 1990's was always treated with some drug containing interferon. After one trial we said enough. Two years ago, I discovered an over the counter treatment used for alcohol addiction on the web. Even thought my wife does not have an alcohol problem, this treatment thanks to my research (not a doctors) is now abating her disease. Stay positive as you have been.

[Ellen Z]

Re: COPD or Asthma, Anyone?

The Mayo Clinic is generally a reliable place to start on any disease/condition.
http://www.mayoclinic.org/diseases-c...n/con-20026992

Here is another general introduction: http://www.webmd.com/asthma/guide/

Some asthma medications are used to relieve an immediate attack. Some are used to reduce inflammation and prevent attacks ... you are supposed to take them regularly, even when you feel fine. Start out by figuring what they gave you and what it’s supposed to do.

This website seems to have a pretty good introduction to the different kinds of medication for asthma:
http://asthma.ca/adults/treatment/
there is an interesting booklet there – click on the link to download it

This is a website for school nurses, with lots of links to other resources. The drawback is that they are focused on childhood asthma. Follow their links to other websites and then explore those websites for information on adult asthma. https://www.nasn.org/ToolsResources/Asthma

this looks pretty good http://www.theasthmacenter.org/index...r_medications/

Here are some slides: http://www.health.state.mn.us/asthma...edications.pdf
Thorough description of the different kinds of medications and gadgets. Look at the slide that says "medication level determined by severity" and the slides after that. Some of this will be over your head. Just look for what you can use and set the rest aside.

Did you get instructions on how to use the inhaler correctly? There are different kinds of inhalers. Ideally the patient should have a practice session in the doctor’s office. The doctor is too busy to do this... that’s why he has (should have) a nurse who is trained to educate patients.
CDC website with videos: http://www.cdc.gov/asthma/inhaler_video/
also check YouTube on this subject

Support groups: If you live in a big city, and you are a member of a large health plan like Kaiser, there will be support groups where patients share tips and learn more about their conditions.
If you don’t have access to something like that, if you are an older person, find the closest "area agency on aging" and ask if there are asthma education/support groups in your area. Or, call the closest hospital, ask for the social work department, and ask whoever answers the phone for suggestions. I googled "adult asthma support groups" and found this
http://www.aafa.org/esg_search.cfm The AAFA website also has lots of educational resources.

Also, look for a book by Kate Lorig called "Living a Healthy Life with Chronic Conditions."

This should be enough to get you started. This is not a one-day project. Don’t rely on any single resource. Download materials, read whatever looks most interesting. After you read four or five different versions of the same thing, a light bulb will go off over your head and the picture will start to make sense.

Also, next time you go to see the doctor, write down your goals ahead of time. You won’t have time to ask ten questions, but you should have time to ask two or three... so think about, what do you most need to know? Questions you might want to ask:
Please explain, what is this medication designed to do?
What is the normal course of this condition? After I take this medication for three months, what is the expected effect... the best/worst we might expect to see?
How can I learn more about this disease process?
Is there someone in the office who can train me to use the inhaler correctly?
Is there a support group in the area?

Practice ahead of time (just as you would do for a job interview) practice saying what you want to say until the words come out of your mouth naturally, politely, pleasantly, confidently. Practice role-playing with a friend if you have one who’s interested in doing this with you... if not, just practice with an imaginery "THE DOCTOR" sitting in a chair across the room. It’s just like learning to ride a bicycle, it’s a skill (and you don't expect to do it perfectly the first time, you expect to keep on doing it till you it's just something you know how to do.)

You have a right to walk out of the doctor's office with the information you need to understand and manage your condition.

PS -- I didn't do a search on COPD specifically, but some of those websites with a section on asthma will also have a section on COPD. Once you've got a handle on asthma do some google searches like "nurses COPD" or "best treatment COPD" or "associations COPD."


　

[shiny!]

Re: COPD or Asthma, Anyone?

Thank you, vt. This looks very helpful. I had wondered if there might be an allergic trigger.

[shiny!]

Re: COPD or Asthma, Anyone?

jpetr48, Thank you for the reminder to go to PubMed and places like that. I know this from all the research I've done on ME/CFS, methylation cycles, etc. but I'm so freaked out now I forgot. Louis Pasteur said "Chance favors the prepared mind" but I wasn't prepared for this.

It helps to know that you've been able to learn from your pet's illnesses. Glad I'm not the only one! Sometimes what works for animals works for us, and veterinarians have more freedom to experiment with treatments than human doctors do.

My dog, Ellie Mae (my avatar) has an autoimmune disease. She wasn't responding to conventional treatment. A vet named Plechner discovered the cause was low cortisol production. He developed a protocol using daily low, physiological (not pharmacological) doses of cortisol- just enough to make up the difference for what the adrenals aren't producing. She's doing great on it.

At the same time an endocrinologist named Jefferies was researching cortisol and came to the same conclusions for people with auto-immune diseases (and asthma and Chronic Fatigue Syndrome). He developed a similar protocol. Since the treatment is helping my dog and I have CFS, before all this happened I had already made an appt with a Naturopathic MD to discuss this treatment plan for me. The appt is next week. If it turns out I have low cortisol, maybe this protocol will help. Maybe all my illnesses are expressions of low cortisol production. Keeping my fingers crossed...

No, no problem sleeping other than my usual fibromyalgia sleep disorder. A handful of herbs before bed takes care of that. The "progressive" attribute of COPD has me worried, though. Asthma isn't progressive. I asked the doctor for a specific asthma test but he didn't want to run one because both conditions are treated the same. But for my own peace of mind I would feel greatly relieved if I didn't have a progressive disease.

My PCP said that COPD is considered progressive because most people who get it are smokers, but that I could live with it all my life and not have it get worse. I don't know who to believe. It certainly got "progressive" last month!

I've probably had exercise-induced asthma all my life which went undiagnosed, but I don't have any of the other risk factors that cause COPD in non-smokers. No sinusitis or cough, rarely catch colds, haven't had the flu in years, have never had pneumonia, have only had bronchitis twice many years ago, don't have GERD...

Anyway, thanks for your help and your prayers. I very much appreciate it.

[shiny!]

Re: COPD or Asthma, Anyone?

Ellen, you're an angel! I so appreciate the tips for how to talk to the doctor. You made me realize that they aren't providing any support.

I had to ask the receptionist how to use the inhaler. The doctor didn't suggest any support groups or breathing training or anything. He didn't even give me a pamphlet. That isn't right.

Those links you provided and that book look like a very good start. Thank you so much for taking the time for me.

[jiimbergin]

Re: COPD or Asthma, Anyone?

Hi Shinny,

I have had asthma for a long long time (I am 70). I have had COPD for a while also. My Mother, age 90, has had COPD for about 5 years. My son, age 47 has had asthma since childhood. We all are on inhalers. My son and I both have emergency inhalers also. Both my Mother and son use Advair which has been around a long time and both are happy with it. I use Dulera and am also satisfied with it. I think it is important to follow the doctor's advice in using the inhalers. My grandfather died of COPD or something like it before such inhalers were available. The links that Ellen listed look like a good start.

[jpetr48]

Re: COPD or Asthma, Anyone?

jpetr48, Thank you for the reminder to go to PubMed and places like that. I know this from all the research I've done on ME/CFS, methylation cycles, etc. but I'm so freaked out now I forgot. Louis Pasteur said "Chance favors the prepared mind" but I wasn't prepared for this.

It helps to know that you've been able to learn from your pet's illnesses. Glad I'm not the only one! Sometimes what works for animals works for us, and veterinarians have more freedom to experiment with treatments than human doctors do.

My dog, Ellie Mae (my avatar) has an autoimmune disease. She wasn't responding to conventional treatment. A vet named Plechner discovered the cause was low cortisol production. He developed a protocol using daily low, physiological (not pharmacological) doses of cortisol- just enough to make up the difference for what the adrenals aren't producing. She's doing great on it.

At the same time an endocrinologist named Jefferies was researching cortisol and came to the same conclusions for people with auto-immune diseases (and asthma and Chronic Fatigue Syndrome). He developed a similar protocol. Since the treatment is helping my dog and I have CFS, before all this happened I had already made an appt with a Naturopathic MD to discuss this treatment plan for me. The appt is next week. If it turns out I have low cortisol, maybe this protocol will help. Maybe all my illnesses are expressions of low cortisol production. Keeping my fingers crossed...

No, no problem sleeping other than my usual fibromyalgia sleep disorder. A handful of herbs before bed takes care of that. The "progressive" attribute of COPD has me worried, though. Asthma isn't progressive. I asked the doctor for a specific asthma test but he didn't want to run one because both conditions are treated the same. But for my own peace of mind I would feel greatly relieved if I didn't have a progressive disease.

My PCP said that COPD is considered progressive because most people who get it are smokers, but that I could live with it all my life and not have it get worse. I don't know who to believe. It certainly got "progressive" last month!

I've probably had exercise-induced asthma all my life which went undiagnosed, but I don't have any of the other risk factors that cause COPD in non-smokers. No sinusitis or cough, rarely catch colds, haven't had the flu in years, have never had pneumonia, have only had bronchitis twice many years ago, don't have GERD...

Anyway, thanks for your help and your prayers. I very much appreciate it.

You are welcome Shiny. I certainly did not mean to cause alarm with the word "progressive." Sometime i get concerned with our affordable heath care act causing some doctors to downplay the seriousness of a disease and not taking the necessary action. I did not know this but if you check link below, it states that 20% of US population has COPD and they cite $32 billion in annual health care costs.
http://www.breathingassociation.org/...r-health/copd/
So in the event your diagnosis is correct- always good to get a second and/or third opinion then i would make sure you are getting the cadillac of treatment and therapy - sounds like Ellen and Jim have some good sound advice.

One of the programs that i am teaching shortly is around Planning for Uncertainity- which happens to patterned after a book by a medical ethics doctor. One of the takeaways which you and i have been practicing for years now is taking responsibility for our own health - by becoming fully informed. When you meet your naturopath ask about TENS or Transcutaneous electrical muscle stimulation and treatment for COPD. Below are just a couple of articles from Pubmed. My wife and I purchased a TENS unit on Amazon and then i followed up with book on accurpressure points so electrodes are placed in right locations. She and i have noted fast and significant positive effects.

From pubmed for COPD and TENS
http://www.ncbi.nlm.nih.gov/pubmed/18721121
http://www.ncbi.nlm.nih.gov/pubmed/20601209

[charliebrown]

Re: COPD or Asthma, Anyone?

I have had asthma and allergies all my life. It may have been an allergic trigger that day that set off your severe acute symptoms. Some of my triggers I can smell like mold and grass,
some I cannot ragweed and others. I using fluticasone once per day before I go to bed. Before I did that I would use a "rescue" inhaler 5 times a week during allergy season for me which is in the fall Sept - Nov.

I feel like my body is a resevior for allergens, it can deal with a certain amount without symptoms, but in the fall when there is a lot of weed pollen here,
then any other thing that I come in contact with just for a bit would set me off. Using the fluticasone I am much more stable.
I can exercise, but not just get off the couch and start running. I need a warm up first for 10 or 15 minutes of moderate exercise and then the asthma
does not seem to come.

A natural remedy that helps is hot black coffee.

I will be happy to answer any questions that you have. I have read others posts here and they all are chock full of good information. As vt says
everyone is different. I would encourage you to explore ideas here to find some relief. The modern medical system has no time to treat a try it and see
disease like asthma. Unless you can find a good old country doctor. I had one of these. He retired a few years ago.

[shiny!]

Re: COPD or Asthma, Anyone?

Thank you, jiimbergin.

Over the years, I've had so many seriously bad reactions to medications that in self-defense I learned about alternative medicine. I use drugs minimally as a last resort, not a first resort. To be told now that I'll have to be on medications for life now is really upsetting. It helps to know that the inhalers make you feel better.

The doctor gave me "Breo Ellipta" (fluticasone furoate and vilanterol inhalation powder). I love this: "Common side effects included nasal inflammation, upper respiratory infection and headache. Less common but more serious side effects could include bone fracture and pneumonia, the agency said.The drug's label will carry a warning of increased risk for asthma-related death. The medication has not been tested in, or approved for, people with asthma, the FDA warned."

The other inhaler is "Tudorza Pressair" (aclidinium bromide). "There are some serious side effects associated with Tudorza Pressair. They include: high blood pressure in the eyes (acute narrow-angle glaucoma), wheezing, urinary retention. Common side effects include: headache, inflammation of the nasal passage (nasopharyngitis), cough."

I'm just really, really upset about having to take drugs that can mess me up so bad, especially given my propensity for being a side-effect magnet. It isn't psychological. It happens even when I don't know a drug's side effects.

Thanks to the advice here, I called the pulmonologist's office yesterday and complained that I'm not being given any instruction or support or education about this disease. The nurse told me to come in Monday. She's going to show me how to use the #(&!%#@!inhalers and answer all my questions.

In the meantime my PCP is looking for a respiratory therapy provider for me. She said I was the first patient who ever asked her for that! I'm going to ask the pulmonary clinic if they know where I can get respiratory therapy.

[jiimbergin]

Re: COPD or Asthma, Anyone?

I have had asthma and allergies all my life. It may have been an allergic trigger that day that set off your severe acute symptoms. Some of my triggers I can smell like mold and grass,
some I cannot ragweed and others. I using fluticasone once per day before I go to bed. Before I did that I would use a "rescue" inhaler 5 times a week during allergy season for me which is in the fall Sept - Nov.

I feel like my body is a resevior for allergens, it can deal with a certain amount without symptoms, but in the fall when there is a lot of weed pollen here,
then any other thing that I come in contact with just for a bit would set me off. Using the fluticasone I am much more stable.
I can exercise, but not just get off the couch and start running. I need a warm up first for 10 or 15 minutes of moderate exercise and then the asthma
does not seem to come.

A natural remedy that helps is hot black coffee.

I will be happy to answer any questions that you have. I have read others posts here and they all are chock full of good information. As vt says
everyone is different. I would encourage you to explore ideas here to find some relief. The modern medical system has no time to treat a try it and see
disease like asthma. Unless you can find a good old country doctor. I had one of these. He retired a few years ago.

I too have had allergies all my life. I was tested when I was 6 and was allergic to mold, dust mites and ragweed and some other fall weeds. I was tested again at 60 and have the exact same allergies. I too use fluticasone, but I use 2 sprays in the morning and 2 at night. It has made a world of difference since I started using it about 15 years ago. I also use benadryl (Diphenhydramine). None of the newer allergy pills help me. There was one called Hismanal that was excellent, but it killed too many people. I also use Mucinex (guaifenesin). I always use the generic if available.

[shiny!]

Re: COPD or Asthma, Anyone?

You are welcome Shiny. I certainly did not mean to cause alarm with the word "progressive." Sometime i get concerned with our affordable heath care act causing some doctors to downplay the seriousness of a disease and not taking the necessary action. I did not know this but if you check link below, it states that 20% of US population has COPD and they cite $32 billion in annual health care costs.
http://www.breathingassociation.org/...r-health/copd/
So in the event your diagnosis is correct- always good to get a second and/or third opinion then i would make sure you are getting the cadillac of treatment and therapy - sounds like Ellen and Jim have some good sound advice.

One of the programs that i am teaching shortly is around Planning for Uncertainity- which happens to patterned after a book by a medical ethics doctor. One of the takeaways which you and i have been practicing for years now is taking responsibility for our own health - by becoming fully informed. When you meet your naturopath ask about TENS or Transcutaneous electrical muscle stimulation and treatment for COPD. Below are just a couple of articles from Pubmed. My wife and I purchased a TENS unit on Amazon and then i followed up with book on accurpressure points so electrodes are placed in right locations. She and i have noted fast and significant positive effects.

From pubmed for COPD and TENS
http://www.ncbi.nlm.nih.gov/pubmed/18721121
http://www.ncbi.nlm.nih.gov/pubmed/20601209

Ta for this, vt! I already have a TENS machine. Definitely going to ask the naturopath about using it for my lungs.

I've also got an advance directive but realized this past month that it isn't comprehensive enough. Can you tell me if that Planning For Uncertainty book discusses how to make provisions for pets? My biggest fear isn't for myself but for my pets.

[shiny!]

Re: COPD or Asthma, Anyone?

I have had asthma and allergies all my life. It may have been an allergic trigger that day that set off your severe acute symptoms. Some of my triggers I can smell like mold and grass,
some I cannot ragweed and others. I using fluticasone once per day before I go to bed. Before I did that I would use a "rescue" inhaler 5 times a week during allergy season for me which is in the fall Sept - Nov.

I feel like my body is a resevior for allergens, it can deal with a certain amount without symptoms, but in the fall when there is a lot of weed pollen here,
then any other thing that I come in contact with just for a bit would set me off. Using the fluticasone I am much more stable.
I can exercise, but not just get off the couch and start running. I need a warm up first for 10 or 15 minutes of moderate exercise and then the asthma
does not seem to come.

A natural remedy that helps is hot black coffee.

I will be happy to answer any questions that you have. I have read others posts here and they all are chock full of good information. As vt says
everyone is different. I would encourage you to explore ideas here to find some relief. The modern medical system has no time to treat a try it and see
disease like asthma. Unless you can find a good old country doctor. I had one of these. He retired a few years ago.

Thank you for the coffee tip. Does it work as well with milk or should it be black?

I had bad allergies to dust, mold and cedar when I was little. They pretty much went away, or so I thought. Now I'm reconsidering since this flareup happened while stirring up a lot of dust in the garden.

One theory about allergies is that low cortisol often plays a role. The fact that one person gets sick from an allergen and another person doesn't means the problem isn't the allergen itself, but the body's dysfunctional reaction to it. Severe or less-severe-but-sustained stress can cause adrenal damage but not necessarily outright failure. This can in turn cause insufficient cortisol production. Cortisol is the body's natural anti-inflammatory.

Jefferies noticed that when patients with low baseline cortisol received small, supplemental doses of cortisol daily, their inflammatory responses normalized. Allergies, asthma, autoimmune diseases and chronic fatigue resolved. He didn't give high-dose steroid treatment which causes adrenal atrophy. It was low dose, just enough to bring the baseline cortisol up to a normal level. Like thyroid patients take supplemental thyroid hormone daily. Unfortunately, most doctors aren't taught how to use steroid hormones this way.

I've Chronic Fatigue Syndrome for over 20 years. Recently learned that CFS shares 36 features of Addison's disease, which is total failure of the adrenal glands. In the weeks leading up to this breathing crisis my CFS had been worsening.

The medical system recognizes total adrenal failure (Addison's). They don't have a medical code for partial adrenal failure AKA adrenal fatigue. Without a code for a condition it doesn't exist to them. They won't treat it.

Holistic doctors recognize and treat partial adrenal failure in which the adrenals are still producing some cortisol, just not enough. That's why I'm going to see a Naturopathic MD to assess my hormones.

[Ellen Z]

Re: COPD or Asthma, Anyone?

Here’s a link to an interview with a cardiologist who recently published a book about our medical system.
http://www.npr.org/programs/fresh-ai...august-19-2014

By coincidence, I listened to this today. He makes interesting points you might want to think about before your appointment on Monday:

** current financial incentives for doctors reward procedures, surgeries and lab tests; they do not reward the physician for time spent talking to patients.

Comments: In other words, your pulmonologist is not a mean person. He is doing the best he can under a system he did not create.

I’d be very interested to hear what the financial experts on iTulip might have to say when they look at the incentives in our healthcare non-system.

** Specialists tend to focus on their own specialties. When it comes to multi-factorial chronic conditions (and that’s what you have) a general practitioner may have a more comprehensive viewpoint than a specialist.

Comment: Of course, that assumes you have a reliable, intelligent general practitioner.

** Towards the end of the interview, this doc describes a case where, with benefit of hindsight, he feels he made the wrong decision.

Comment: All doctors make mistakes. I have great respect for those who talk about them, and learn from them.