COPD or Asthma, Anyone?

[shiny!]

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.

Thanks for this; will definitely listen to it. Unlike the cardiologist who has a God-complex, the pulmonologist is a very nice man. He just can't spend more than five minutes on a medicaid patient. Thanks to Obamacare making health care SO affordable, I've been shoved into medicaid since my income doesn't qualify me for insurance subsidies.

Fun fact about Obamacare: If you receive a government (taxpayer funded) subsidy for health insurance premiums, the government won't come after your estate for reimbursement after you die. If you're on medicaid, however, every penny spent on your medical care will be garnished from your estate after you die.

Insurance premium subsidies are based on income, not total wealth. If your income is below a certain threshhold you don't qualify for a subsidy. You either have to go on medicaid or pay 100% of the insurance premium yourself. Middle class people who lost their good jobs and now work for minimum wage can't afford the premiums. They're forced into medicaid. After they die, their IRA's, homes, etc. will be confiscated to pay for the medical care they received. Whatever they might have been able to leave to their spouse, children or charity will be confiscated by the government. The family gets anything left over. Given the cost of medical care, probably nothing will be left over.

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.

So true. My PCP is a nurse practitioner- very smart, very kind. Possibly because she wasn't trained as a doctor she actually listens to me.

The ER doc saw an agitated woman struggling to breathe, determined that I wasn't having a heart attack and treated me like a hysterical hypochondriac. Between gasps I asked what could be causing my shortness of breath. She said she had no idea and walked off.

The cardiologist saw an overweight woman so immediately jumped to the conclusion that I must have a blocked artery. When I asked him if it could be asthma he conceded it might be, but he thought it unlikely. He ordered a nuclear stress test since I was too breathless to do the treadmill. I asked him about the FDA warning that the drug used could be dangerous for asthmatics or people with bronchial diseases. He shrugged me off, saying he HAD to have the stress test. I showed up for the test but they had screwed up the scheduling. They wanted to reschedule but I refused. Figured that God was looking out for me.

The pulmonologist's main focus is sleep apnea. In spite of having no symptoms of sleep apnea and all the symptoms of asthma, he decided I must have sleep apnea because I'm overweight. He wanted to order a sleep study! I had to argue with him to even consider asthma and a pulmonary function test, which a friend had suggested. Then he was like, "Well, you are wheezing. Maybe it could be asthma." Ordered a pulmonary function test, handed me a trial inhaler and was out the door.

** 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.

I feel like I have to practice defensive medicine like I practice defensive driving.

[jk]

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.

i would not focus on the side effects too much. "common" means 10% or higher, and it also doesn't specify the intensity of the side-effect. it is defined as present or absent, and ignores severity. don't assume you will get side effects. you might, but the fact you had side effects to other types of medications is NOT predictive of your propensity to get side effects to this type of medication. and you can always stop taking it if it doesn't agree with you.

[shiny!]

Re: COPD or Asthma, Anyone?

i would not focus on the side effects too much. "common" means 10% or higher, and it also doesn't specify the intensity of the side-effect. it is defined as present or absent, and ignores severity. don't assume you will get side effects. you might, but the fact you had side effects to other types of medications is NOT predictive of your propensity to get side effects to this type of medication. and you can always stop taking it if it doesn't agree with you.

Thank you so much, jk. This puts my mind at ease.

[Ellen Z]

Re: COPD or Asthma, Anyone?

The pulmonologist's main focus is sleep apnea. In spite of having no symptoms of sleep apnea and all the symptoms of asthma, he decided I must have sleep apnea because I'm overweight. He wanted to order a sleep study!

I feel like I have to practice defensive medicine like I practice defensive driving.

To a carpenter with a hammer, everything looks like a nail.

> They wanted to reschedule but I refused

It's very important to refuse tests you don't think make sense for you... but as gently and politely as possible, because they are human beings, and you may need their informed cooperation down the road. Most of them are just doing what they were trained to do.

You have a chronic condition, and it may have a combination of causes. It's fine for you to take a while to figure this out. First do the basic things, then if it seems advisable, you can do fancy tests later on.

Every doctor learns "first, do no harm"
Every doctor learns, "when you hear hoofbeats, think of horses not zebras."

After your research project on asthma and COPD, you might want to also google
___ patient-centered care
___ informed medical decision-making
There is a lot of valuable material online about how to make the best possible use of your time with a doctor.

[shiny!]

Re: COPD or Asthma, Anyone?

Thank you for the reminder to remain civil and polite, Ellen. When doctors are arrogant and dismissive of my questions I tend to "react." I didn't used to be like this. 20+ years living with a complex, debilitating illness with no apparent cure and no recognition by the medical community has made me cranky.

Every doctor learns "first, do no harm"

I wish more of them practiced that philosophy when it comes to dangerous procedures and medications.

A New, Evidence-based Estimate of Patient Harms Associated with Hospital Care

Every doctor learns, "when you hear hoofbeats, think of horses not zebras."

When one lives with a chronic illness that resists standard treatments, one wishes they could find a zebra hunter or two. But ever since doctors stopped working for their patients and started working for the insurance companies, most of them

A. can only afford the simple, easy patients.
B. are afraid to color outside the lines.

With me, they offer their snap judgement and one-size-fits-all solution. I tell them it's been tried many times but didn't work or made me worse. They give me the blank stare, then tell me it's the "standard of care." I repeat that it didn't work and ask them if they could please believe me and dig deeper into their toolkit. They tell me to find a different doctor. Then they're off to see their next, much easier patient. I get more frustrated and angry every time this happens.

Now I have this new or newly diagnosed disease and I'm jaded with cynicism and distrust towards the medical profession. I've got to leave my baggage outside the door and try to trust them.

So thanks again for the reminder to be polite. I'm gonna smile until my face hurts.

[jk]

Re: COPD or Asthma, Anyone?

iirc you live in or near phoenix. is that right? if so, i'd recommend you go to a practice or clinic affiliated with the medical school. in my experience the academic types are more arrogant than the community practitioners, but also pride themselves on their acumen in recognizing zebras. they're more likely to listen if you tell them some treatment has already failed. they can show off to the medical students that they've got more stuff up their sleeves.

[jpetr48]

Re: COPD or Asthma, Anyone?

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.

No advance directive does not. However you can always make arrangements directly with friends or family direct to ensure your pets are provided for. My wife and I have our two doges being taken care of by her sister. Because her sister is older as a back-up we have a neighbor that we have known the past 14 years. Great that you are planning with forethought- something most ought to do from young professionals to senior adults.

Joe

[shiny!]

Re: COPD or Asthma, Anyone?

iirc you live in or near phoenix. is that right? if so, i'd recommend you go to a practice or clinic affiliated with the medical school. in my experience the academic types are more arrogant than the community practitioners, but also pride themselves on their acumen in recognizing zebras. they're more likely to listen if you tell them some treatment has already failed. they can show off to the medical students that they've got more stuff up their sleeves.

Thank you very much, jk. That's a great idea. I'm going to discuss this with my PCP as she has her staff working on referrals for me.

[shiny!]

Re: COPD or Asthma, Anyone?

No advance directive does not. However you can always make arrangements directly with friends or family direct to ensure your pets are provided for. My wife and I have our two doges being taken care of by her sister. Because her sister is older as a back-up we have a neighbor that we have known the past 14 years. Great that you are planning with forethought- something most ought to do from young professionals to senior adults.

Joe

Neither my husband nor myself had done any advance planning before he died. That was when I realized that I wanted to make things as simple as possible for the people who would be dealing with my stuff after I die.

I don't have any next-of-kin. Got one friend who will take my dog and another who will take my two cats. I want to provide financial compensation to them because the animals need vet care, medication and special foods- and it ain't cheap. The problem once again boils down to the government possibly confiscating all my assets to reimburse themselves for medicaid expenditures. I want some money set aside for pet care that the government can't touch.

[jpetr48]

Re: COPD or Asthma, Anyone?

Neither my husband nor myself had done any advance planning before he died. That was when I realized that I wanted to make things as simple as possible for the people who would be dealing with my stuff after I die.

I don't have any next-of-kin. Got one friend who will take my dog and another who will take my two cats. I want to provide financial compensation to them because the animals need vet care, medication and special foods- and it ain't cheap. The problem once again boils down to the government possibly confiscating all my assets to reimburse themselves for medicaid expenditures. I want some money set aside for pet care that the government can't touch.

Yes I recall well Shiny that day you informed us of your husband. And one of the reasons why i am praying and coming alongside you as others have on this forum.
I will be having lunch with a colleague Tuesday (11/4) who is an estate planning attorney licensed to practice law in AZ and CA- PM me if you'd like me to ask any questions on your behalf and i will PM back.

[shiny!]

Re: COPD or Asthma, Anyone?

Yes I recall well Shiny that day you informed us of your husband. And one of the reasons why i am praying and coming alongside you as others have on this forum.

Words like "thank you" and "I'm so grateful" can't convey how appreciative I am for your support and prayers- not only from you but from everyone here.

I will be having lunch with a colleague Tuesday (11/4) who is an estate planning attorney licensed to practice law in AZ and CA- PM me if you'd like me to ask any questions on your behalf and i will PM back.

That's really kind of you. Check your PMs in a little bit.

[ST]

Re: COPD or Asthma, Anyone?

I'm glad EJ pointed this thread out to me this morning as one of the reasons the community here is so wonderful. After reading it I think it just helped me as well. (I, too, like others mentioned in this thread take fluticasone propionate for seasonal allergies and I often forget that in fall the effect on me is not nearly as pronounced as in the spring so I don't always equate tiredness (as I've been experiencing in my Sunday morning outdoor hockey games lately) to allergies. Thank you for that - think you all may have just solved my own issue.

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.

Shiny - you've probably already considered this and it's unfortunate if it sounds fashionable at the moment, but one of my twin daughters has Celiac disease and so I've learned much about the condition over the past 3 years. Large numbers of people are being re-diagnosed with Celiac who were thought to have Chronic Fatigue Syndrome. Some show symptoms, but many show no outward symptoms and it's a simple blood test. Once we figured it out with our daughter, within two weeks of a gluten free diet she had 3x as much energy and was many times happier. Her distended belly also went away (was being malnourished despite eating a healthy plentiful diet because the gluten essentially prevented nutrients from being absorbed) and she was back to 'thriving' along side her sister. The latest research is tying gluten to all sorts of neurological conditions as well. I'm a big fan of this kind of reductionist experimentation, since like you I've an aversion to drugs and would rather remove things from the diet to see if there's an effect.

Do take care.

[shiny!]

Re: COPD or Asthma, Anyone?

I'm glad EJ pointed this thread out to me this morning as one of the reasons the community here is so wonderful.

It sure is!

Shiny - you've probably already considered this and it's unfortunate if it sounds fashionable at the moment, but one of my twin daughters has Celiac disease and so I've learned much about the condition over the past 3 years. Large numbers of people are being re-diagnosed with Celiac who were thought to have Chronic Fatigue Syndrome. Some show symptoms, but many show no outward symptoms and it's a simple blood test. Once we figured it out with our daughter, within two weeks of a gluten free diet she had 3x as much energy and was many times happier. Her distended belly also went away (was being malnourished despite eating a healthy plentiful diet because the gluten essentially prevented nutrients from being absorbed) and she was back to 'thriving' along side her sister. The latest research is tying gluten to all sorts of neurological conditions as well. I'm a big fan of this kind of reductionist experimentation, since like you I've an aversion to drugs and would rather remove things from the diet to see if there's an effect.

Do take care.

That's so great about your daughter. Glad you found the solution to her problem.

I have considered celiac. A rheumatologist tested me for celiac and food allergies about 15 years ago; all tested negative. But I've known for years that wheat gives me a stuffy head allergic reaction. So does milk unless it's been cultured enough to convert all the lactose. This summer I cut breads out of my diet and lost 8 pounds in 7 weeks, but maybe I need to be even more vigilant about avoiding hidden gluten.

When I did intensive Gerson Therapy for six months I didn't have any grains or dairy at all. Lost 22 pounds of unhealthy weight and my neck and back pain simply disappeared (didn't notice an increase in energy, though). The benefits could have been entirely from drinking 6 quarts of fresh juice daily, but I think it was also from the elimination of gluten and dairy. So I think you're on to something.

I'm going to the Naturopathic college clinic tomorrow. Will mention this to them.

Thanks again everyone for your thoughts.

[Ellen Z]

Re: COPD or Asthma, Anyone?

The problem once again boils down to the government possibly confiscating all my assets to reimburse themselves for medicaid expenditures. I want some money set aside for pet care that the government can't touch.

I found some background information about the federal program requiring asset recovery from people who receive care through Medicaid.
http://www.washingtonpost.com/nation...9b2_story.html
It seems that different states implement this federal requirement in a wide variety of ways:
In Oregon: "New rules that took effect last year state that asset recovery now applies only to long-term care. .... Other states have taken a much more lax approach to asset recovery in the past, hesitant to target poor people whose only valuable asset might be the farm that has been in their family for generations. Experts say there are no good, recent national data on how asset recovery is applied, with states differing drastically and working on a case-by-case basis."

[shiny!]

Re: COPD or Asthma, Anyone?

I found some background information about the federal program requiring asset recovery from people who receive care through Medicaid.
http://www.washingtonpost.com/nation...9b2_story.html
It seems that different states implement this federal requirement in a wide variety of ways:
In Oregon: "New rules that took effect last year state that asset recovery now applies only to long-term care. .... Other states have taken a much more lax approach to asset recovery in the past, hesitant to target poor people whose only valuable asset might be the farm that has been in their family for generations. Experts say there are no good, recent national data on how asset recovery is applied, with states differing drastically and working on a case-by-case basis."

Yep, this is exactly what I'm concerned about. Gotta love how the AARP is taking a "wait and see" approach instead of actively pressuring Congress to fix this. And the condescension of the last paragraph:

“I would inquire about the application of [Medicaid asset recovery], but I wouldn’t succumb to the fear of rules you don’t understand as a reason you wouldn’t become covered under Medicaid,” she said."

We understand it perfectly! What the law allows- even orders- the states to do is very clear, it's only the implementation that varies. States that aren't siezing assets now can start at any time. They probably will when the economy takes another dive and tax revenues drop. Houses are an expensive PITA to sieze and resell, but bank accounts, IRA's, and investment accounts are easy pickings.

~~~~~~~~~~~~~~~~~~

Some good news is the pulmonologist office is getting me a referral to a respiratory therapist. It'll be 3x a week for 9 weeks.

And my followup visit with the (arrogant) cardiologist yesterday went great. It was funny!

He came in all frigid and scoldy-faced, P.O.d because of my angry message about his jerking me around and insisting I take a stress test that's dangerous for asthmatics. Looking like he had stepped in dog poo, he asked me how I was doing.

I said my breathing was starting to get a little easier. He looked puzzled. Told him I got my diagnosis: COPD, with probably asthma.

He was SHOCKED. His mouth literally fell open. He read the test for heart failure and the ultrasound- they were perfect. He pulled up the pulmonary function test and read it. "Oh my!" His entire demeanor changed. He stopped looking at me like I was a fat woman with a heart condition I brought on myself, or a disagreeable, out-of-condition hypochondriac.

I very sweetly and politely explained that I had been suffering from a severe asthma attack or COPD flare and NO ONE picked up on it. Not the ER doctor, not even another cardiologist in his own clinic four years ago, when I collapsed from shortness of breath less than three minutes into the stress test. That when I asked them why I couldn't breathe they both said they had no idea and walked away. How neither of them suggested that I get my lungs checked. I didn't mention how he, too, had brushed me off when I raised concerns about doing the stress test if I had asthma, but it was the giant elephant in the room.

Told him how I've probably had asthma my entire life, but no one ever diagnosed it because they were having too much fun telling me I was lazy and needed to exercise more, and how I had believed them and felt like a failure. How I'm realizing now all the things I missed out on for fifty years because I couldn't breathe. Told him that if I could have a wish it would be that doctors would recognize asthma when it's staring them in the face.

He became a different person. He didn't admit how wrong he had been but he was taking in my words. There was no more talk of needing a stress test. Maybe next time he'll do better when someone like me walks into his exam room.