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Monday, January 29, 2018

Yeah, I know everything about asthma, you can't help me

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Every time I hear someone say (or act like) they know everything there is to know about asthma, I just want to do a face palm.

This isn't a competition to see who knows more about asthma!

NO ONE knows everything there is to know about asthma. There are a myriad of people who work with asthma - researchers, doctors, asthma specialists, health educators, parents of kids with asthma, people with asthma. 

We all come from different backgrounds and have different experiences.

I LOVE the work researchers do! They find new medications, develop new asthma tracking apps, experiment with environmental interventions. etc. Do they know everything about asthma? No - because many of them don't actually LIVE with the disease! But some researchers ask patients to help guide their research based on their experiences (with asthma, diabetes, cancer, etc.) PCORI is one example of an organization that funds research guided by the patients!  

I love my doctors too - but many of them don't have asthma either. And if Asthma Doc is out of town, I may have to go to my Primary Care Doc. He doesn't specialize in asthma or understand what it's like to live with asthma, but he can follow the NAEPP guidelines for asthma control. That helps him to know what medications to prescribe and when to change them based on a patient's control or severity. 

Health Educators can provide what the doctors and nurses don't have time to do - asthma education. But it may be hard for them to really "get it" if they don't live with asthma and have never had an asthma attack.  

Parents of kids with asthma really have their hands full, managing each kids' symptoms and prescriptions. As the mom of 3 grown kids with asthma, I spent my fair share of time at Asthma Doc's office, the Pediatrician's office, After Hours offices, Emergency Room and in the hospital. But, since I have asthma, I knew EXACTLY what they were feeling and how to help them.

There are people who have asthma but don't have allergies. So they can have dogs, cats, and a yard full of flowers. Wow! How would that be? IF someone's dog walks up to me, (and even if I don't pet it), I will start sneezing and have my chest tighten up.

Those of us with asthma AND allergies have a very different viewpoint of asthma. Especially when you are allergic to so many different things - that can all set off an asthma attack. Some of us take allergy medicine every day, some of us have years worth of allergy shots. Some do both.

Some parents have never had to deal with a kid with asthma being hospitalized (lucky!) My kids were hospitalized 12 times for asthma (2 ICU). I was usually sitting at their bedside, coughing right along with them, because when they got pneumonia, I got pneumonia. 

Some people with asthma only have to use their Albuterol (rescue inhaler) a couple of times a year. Wow....really? How would that be? I use mine once or twice a week (and I already take a daily controller inhaler.)

Some people with asthma have never had to use a biologic. Biologics are medications given by injection for those whose asthma can't be controlled with traditional treatment programs. My son started on the first biologic back in 2008 and had monthly injections for 7 years!
Do any of these people know more than someone else? No - because we all experience asthma differently.

Even if you think you know everything, you can always learn more!

I watch webinars every month from Allergy & Asthma Network.   

I watch asthma webinars from various state health department Asthma Programs, the EPA and CDC. 

I attend national asthma education conferences every year.

I read about new research in medical journals (they're really not that bad once you get used to them!)

How do you stay up to date?

Asthma is always changing, and if someone wants to share something with you, you can politely listen. If  it's new info, great! If if something you already know, that's okay - they were trying to help.

Remember that we all come from different backgrounds and experiences and asthma is different for everyone. It's not a competition of who knows more, it's a collaboration to learn and share!


Tuesday, January 16, 2018

How much does asthma cost?

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Allergy & Asthma Network recently shared a story on their Facebook page from The Daily Mail. 

(I found it rather funny because a newspaper from England was reporting about asthma in America!)

How expensive is asthma? Well, it ranks right up there with cancer, which costs $87 billion in healthcare. Asthma costs $80 billion. Wow!

How much does that mean for the average person with asthma? The Daily Mail article says:

$3,266 for the average person

That breaks down to:

  • $640 for doctor appointments
  • $1,830 for prescriptions
  • $105 for ER visits
  • $176 for outpatient hospital visits
  • $529 for hospital care
Where does The Daily Mail get that data?

 "The research is based on a six-year survey on more than 200,000 people from the Medical Expenditure Panel Survey, the most comprehensive source of data on health care use in the US."
You may be thinking, "We don't spend that much!" 

 Or you may think, "We spend WAY more than that!" 

I had a son that started on biologic injections (those are shots for people with severe asthma, whose asthma can't be controlled with standard asthma medicines.) My son began getting shots in 2008, and his vial of medicine for his shots was $1,000 back then. I'm sure it's closer to $1,500 now. So, we would be spending the average of $3,266 in three month (when you add in doctor's office visits for the shots, inhalers, etc.)

Hospitalizations for us were more than $529, ours averaged about $1,000 a day. The kids were usually hospitalized for 3 days, so we would easily top $3,000 for a hospital stay (and sometimes we had 2 kids in the hospital at the same time - thanks to pneumonia!)

Add to that missed school and work days, and it really adds up. (They estimate $3 billion in missed school and work days.) 

When my kids were hospitalized for asthma, they would usually miss the following week of school after they were discharged from the hospital. Asthma Doc stressed the importance that they rest, rest, and rest some more!

So, now that we know we're expensive to treat, what do we do?

The study recommends expanding asthma education so people can better manage their asthma, and to reduce environmental triggers in the home (dust mites, mold, dander from animals, etc.)

You can search for "Asthma Education" online and find a LOT of information, here is info from The CHEST Foundation 

The Centers for Disease Control (CDC) lists many asthma triggers and how to reduce those in  your home.

We may be expensive, but we're worth it!



Tuesday, January 9, 2018

Thoughts from a respiratory therapist

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I was at a family party over the holidays and was talking with a family member who is a respiratory therapist. 

Since I work in Public Health, I see things very differently from those who work in the medical field. I wanted to know what the respiratory therapist saw in the hospital every day.

Here are his biggest frustrations/thoughts:

  • Don’t buy cigarettes, buy Advair or Dulera instead (they are controller inhalers). If you stay on your controller, you may not need to go to the ER. (Controller inhalers work to control the swelling in the lungs that happen when you have asthma. If you can keep the swelling down in your lungs, you will breathe much easier.)
  •  Don’t run out of your inhaler! Gotta do those refills! (I am guilty of running out of my controller inhaler - twice! I love that my inhaler has a counter on the back....but you actually have to LOOK at the counter. Oops!)
  •  Don’t smoke (Easier said than done, right? I have 2 family members who have smoked for decades and have tried to quit. It's been a struggle for them, but there are lots of resources out there, including one to help with your Quit Day.)
  • Don’t go to ER and smoke pack of cigarettes afterwards and have to come right back (he can give you a breathing treatment to open up your lungs, but they can tighten right back up after smoking.)

  • Take your inhaler correctly (He says he tries to correct people on their inhaler technique, and they get defensive.)

  • If you like spending money and only getting half the medicine, don’t listen when I try to correct your technique. (He's not trying to make you mad, he just wants you to get all of the medicine that you should be getting!)

  • People who say, "You’re wrong, I’ve been taking it this way for years." He has to tell them, "Well, it’s still wrong, no matter how many years you’ve been taking it that way." ( I hear that all the time - I know what I'm doing! I've had asthma all my life! One study looked at various  research studies and found that between 50% - 100% of people do not use their inhalers correctly. )

  • Don’t get defensive, I’m here to help you get the most out of your medicine. (Notice a theme going on here?)
  • When people say, “no one has ever told me that before!(As a parent of 3 kids with asthma, who were hospitalized 12 times when they were young, I'm sure I missed a lot of what respiratory therapist, doctors, and nurses were trying to tell me at 3am while I was sleep deprived and struggling with a migraine at my kid's hospital bedside. So I understand how people can miss what is said. You really can learn something new every day!)

He finished with, "It's frustrating because I know people are going to do what they want to do, and go right back smoking, not using their controller inhaler, and not using correct technique."

Think YOU are using your inhaler the right way? Here's a video that shows correct inhaler technique

So remember, the respiratory therapist is your friend! He's not trying to make you mad by correcting your inhaler technique, he's not trying to annoy you by asking when you're going to quit smoking, etc. He WANTS you to be healthy, be able to breathe well - and NOT have to come back to the Emergency Room.