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Tuesday, December 11, 2018

How do you comfort a child in the hospital?


This is one of those things you never want to happen - but it does. 

We had this scary and sad experience 12 times with our kids. I really hate pneumonia and smoke from forest fires.....those are my kid's enemies.

So, you have a child in the hospital for asthma, now what?

Well, you know your child better than anyone else. What would comfort them?

For us, we found a few things that helped and we packed them with every hospitalization.

Favorite blankie  

My kids would usually get a blanket from Project Linus, but it's not the same thing as having your favorite blankie at the hospital. The nurses would always remind us that when they come in to change the sheets on the kid's hospital bed, to make sure they didn't accidentally take blankie. Because once it went to the hospital laundry, we probably wouldn't get it back. 

Favorite stuffed animal 

Same thing here. They would get a stuffed animal that was donated to the hospital, but it's not the same as their favorite stuffed animal. 

Favorite music 

This is going to tell you how old I am.....we used to take a small CD player to the hospital with the kid's favorite CD's. And yes, I still have every Disney song memorized. Now kids have cell phones and other devices to play music, so take those. 

Snacks

Our kids were all picky eaters, so we got the okay from the nursing staff and then brought the kid's favorite snacks to the hospital. And I brought along a lot of chocolate for myself. Because chocolate makes everything better.

The Child Life Specialist 

Did you know that hospitals hire Child Life Specialists to help families in the hospital? They are specially trained and certified, and can help in various ways. They can blow bubbles while the kids get IV's (to distract them), bring your kids toys, blankies, video games, art supplies, etc. They are really good listeners too if the kids want to talk (or the parents!)

Have you found anything that helps when your child is in the hospital?
 

 

 
 

 

 

Thursday, December 6, 2018

When you don't know what you're missing

(Shutterstock image)

Recently, one of my college aged sons was looking at a big clock on the wall in our living room. He said, "You know, I can see the number on the clock but not the letters." I could see him squinting, but he still couldn't see them.

I was a little surprised and wondered how long he was having trouble seeing?

I knew he would need a pair of glasses, so I told him to go to the eye doctor. Sure enough, he came back home with a prescription for glasses.

Once he had his glasses, he was walking around the house looking at things. I could tell that he was noticing things that he wasn't able to see before.

I told him I remembered what it was like when I got glasses. I didn't realize what I missing! I THOUGHT I could see okay, but once I got glasses, I realized I had been missing a lot!

That reminded me of families that get inhalers for the first time. They have NO idea that they aren't breathing as well as they could be. Most people are really surprised the first time they use an Albuterol inhaler or have a breathing treatment. 

They didn't realize that it should be easier to breathe. They struggle to breathe, can't keep up with the other kids at recess, or with the kids on the soccer team. That's normal for them.

And adults tell me they just thought they were out of shape! And that's why they couldn't keep up when the family went for a walk, rode bikes, etc.

Once they were on the right medicine, they couldn't believe how much better they felt! 

Hopefully all of you are on the right medicine and can feel the difference when you are taking it!

Friday, November 30, 2018

When to take a child to the emergency room

(Shutterstock image)

This is one of those scary decisions as a parent of a child with asthma. I should know - my kids were in the hospital 12 times.

Can I tell you how much I hate pneumonia? And smoke from forest fires? Those caused all of my kid's hospitalizations.

So, when do you know if it's time to take a child to the emergency room?


Nemours Hospital, says you should watch for these Emergency Signs:


"Your child has constant wheezing

Your child uses quick relief medicines (also called rescue or fast-acting medicines) repeatedly for severe flare-up symptoms that don't go away after 15-20 minutes or return again quickly

Your child has a lasting cough that doesn't respond to inhaled quick-relief medicine

There are changes in your child's color, like bluish or gray lips and fingernails

Your child has trouble talking and can't speak in full sentences

The area below the ribs, between the ribs, and in the neck visibly pull in during inhalation (called retractions)"


If you see any of those in your child, Nemours Hospital says to: 


".....see your doctor immediately, go to the ER, or call an ambulance"
 
 
 
I try to be prepared for an emergency by having an Asthma Action Plan for each of my kids. 
 

This one is from American Lung Association 

  It has green (good), yellow (warning/caution), and red (emergency) zones. Your doctor should work with you to help decide what to do in each zone. 
 
Talk to your doctor to let him know what you need to do in your red (emergency) zone.
 
It may help avoid a hospitalization or death from asthma.  



I can't tell you how many stories I have heard about people dying from asthma. One of the times when my daughter Kitty was being discharged from the hospital, the nurse who was pushing Kitty's  wheelchair said her brother died from asthma. Her brother's wife was rushing him to the hospital to get help, but he died in the car.

I have heard another story about a woman who found her son on the front lawn of the house. He had been hangout out with his buddies, but they all went home. He had an asthma attack and couldn't get into the house to get his inhaler. They found him dead on the lawn.

I tell you these stories to get you to see how FAST asthma can go from bad to worse. You may think you can handle it at home, but that's why we have hospitals. 

A couple of times, when my son was in the hospital, they had the "crash cart" outside his room. They weren't sure THEY could keep him alive - even with all of their hospital equipment. 

PLEASE do not "wait it out" to see if your child gets better.

After one hospitalization, the respiratory therapist said, "Don't let your son sleep through the night. Many parents are relieved that their child is finally sleeping. But - their oxygen level can drop, and drop, and they will stop breathing." That scared me!

After that, when the kids were really sick, Hubby and I would take turns staying awake and checking the kid's oxygen levels with an oximeter. 

Oxygen levels aren't the only thing to watch out for. Some people with asthma are able to compensate, so they don't seem that sick. 

Watch for the symptoms above - DO NOT be fooled by a high level of oxygen.    

This article, "Let's Talk Pulse Oximetry" may help explain it.

Decide now what you will do if your child is having any emergency symptoms. It helps to make a plan ahead of time (best route to the hospital vs calling 911.)



Monday, November 19, 2018

Bruises and asthma


I'm one of those really uncoordinated people. In fact, I joke that I can't walk and chew gum at the same time. 

I used to be graceful - I was a dancer and ice skater when I was young. But, the older I get the clumsier I am. Of course, that could be that my eyes are getting worse as I'm getting older!

These days, it's not uncommon for me to round a corner and hit my leg or toe on the kitchen cabinet or furniture. I also have fallen UP the stairs. Anyone can fall DOWN the stairs, but it takes talent to fall UP the stairs!

So, enter my bruise covered legs. Most of the time, I don't notice it. But sometimes if I wear a skirt at work, someone will say, "Where did you get those bruises?!" And most of the time - I have no idea!

Once in a while, it will really hurt when I hit my leg on something (like when I was trying to pull my suitcase off the conveyor belt at the airport before the cranky TSA agent yelled at me because I was taking too long to pick it up.) So I know something like that is going to leave a bruise.

But, how can I have so many other bruises and not know where they came from? I remember hearing that inhaled corticosteroids (the kind of inhaler you take every day) can cause bruising. 

 There are several studies that show that being female, older, and using a corticosteroid inhaler makes it more likely that you will have bruises.

There are other causes of bruising too, which could be a lot more serious. Like leukemia, Factor X Deficiency, hemophilia, etc. 
 
So be sure to talk to your doctor if you notice a lot of bruising.
 
Luckily, I had a physical recently, so I know my that my blood levels are okay. So, for me - my bruises on my legs are just a side effect of my inhaled corticosteroid. And me being clumsy.
 
If you notice bruises - talk to your doctor just to make sure there isn't anything more serious going on. And let them know if you are taking an inhaled corticosteroid.
 
 
 
 

Thursday, November 8, 2018

Yes or no to flu shots?



It's that time of year again, where the flu is making the rounds. I always worry about getting the flu, because it can be especially bad for people with asthma. 

Any cold or flu can be worse when you have asthma. 

And I am already hearing about people dying from the flu. In fact, a young (and I assume healthy) 29 year old female lawyer died of the flu in October. And there was no mention of that she had asthma.

Last year, The Hubby got the flu.

Even though I had quarantined The Hubby to our bedroom, was cleaning everything with bleach wipes, and I was sleeping on the couch to try to avoid the germs, I got sick anyway. 

I was at work and felt a little tickle in my throat, so I used my inhaler. As the day went on, my lungs started to burn. That was unusual because I didn't have a runny nose, and I wasn't coughing or sneezing. I didn't feel sick. But my lungs just started to burn-  and it quickly got worse. 

That's unusual for me, because my lungs don't burn unless I have been exposed to dogs, smokers, etc. They usually burn after an asthma attack. Or - from being sick for days at a time.

 I left the office and went home to use my nebulizer. At this point, I knew it that just using my inhaler wasn't going to cut it, I needed something stronger.

Even after using my nebulizer, my lungs kept getting worse. Then the chills and fever started. Great.

By now, it was early evening, and the doctor's office was closed. 

I knew this could not wait until morning. Since The Hubby was too sick to drive, I managed to drag myself to Urgent Care. I told Urgent Care Doc that my husband had the flu, I think I caught it, and I have asthma. 

That always changes how doctors treat a patient who comes in with problems breathing. They know that those of us with asthma get sicker than the average person (who doesn't have asthma.)

Urgent Care Doc said that there was a shortage of the anti-viral drug they use to treat the flu, but he was going to give me a prescription and to start it immediately.

I could barely drive myself to the closest 24 hour pharmacy to get my medicine and drive back home. This is the first time that I have been scared that I was going to end up in the hospital. 

The flu hit so hard and so fast, that I was worried. My kids had been in the hospital 12 times when they were younger (mostly for pneumonia and bad air quality).

But, this is the first time I was worried that I would end up in the hospital. 

As a Certified Asthma Educator, I knew how to treat myself at home, but I there were a few hours where I worried I was going to have to call one of my college aged kids to take me to the hospital.

I really feel that if I hadn't had my flu shot, it would have been worse. I know that it offered some protection. And that if I didn't have my flu shot, I would have ended up in the hospital.

So, if you are debating about getting the flu shot this year, and you have asthma, do you really want to take a chance? 

People do end up in the hospital or worse - die from the flu. 

Don't think it can happen to you? Neither did the 80,000 people who died from the flu last year.

80,000

Don't take a chance - if you can protect yourself, do it! Get your flu shot today!  






 
 

Wednesday, October 24, 2018

Getting help for asthma in rural areas

(shutterstock image)

I live in very large state with a lot of sparsely populated areas. To give you an idea of how big, you would have to drive for 8 hours to cross from the north to the south end of my state. And about 5 hours to drive from the west to the east.

We have several big cities, but also a lot of tiny towns - the kind of towns where they are so small that they don't have stop lights. 

Once, I was traveling on the interstate near a small town and I noticed the other drivers suddenly putting on their brakes. I couldn't see what was going on until I got closer, and then I saw that the farmer's cows had broken through the fence and were loose on the interstate. The highway patrol was trying to keep them out of the traffic lanes until they could get the rancher to come on horse back.

True story. 

So when we have these tiny towns that are far away from hospitals and clinics, how can they get help?

Enter Telemedicine and Telehealth. The FCC says:

"Telemedicine can be defined as using telecommunications technologies to support the delivery of all kinds of medical, diagnostic and treatment-related services usually by doctors. For example, this includes conducting diagnostic tests, closely monitoring a patient's progress after treatment or therapy and facilitating access to specialists that are not located in the same place as the patient."

Sounds a little confusing, but let's break it down. 

Maybe you had to drive several hours to see a specialist (which meant taking time off work), and spent a lot on gas money, and maybe even had to get a hotel to stay overnight. Or it's time for a follow up appointment, but you can't afford to take more time off work. 

But, you could go to your doctor's office, and they could have network set up where our regular doctor can communicate with a specialist. They have special medical equipment that allows the specialist to hear your lungs or heart - from your regular doctor's office! 

This video explains it a little better. It's using technology to connect you with a doctor.

There are also a lot of websites and apps that let you talk to a doctor over the computer, or on your phone.  You may be so sick that you can't drive yourself to the doctor's office. But, you can talk to them using the camera on your computer, or your phone camera. They can do a "virtual" visit, diagnose you, and even send a prescription to your pharmacy.

So, if you live in a rural area - or are too busy or sick to be able to drive to your doctor's office, check online and see what might be available for you.

You never know when it might come in handy! 
 

Monday, October 8, 2018

Teal colored pumpkins for Halloween!



I know teal is a really popular color for home decorations (and one of my personal favorites), but teal  pumpkins?

Yes!

Teal pumpkins aren't made to color coordinate with your decor (although you could use them for that if you wanted to.)

The Teal Pumpkin Project (R) began in 2014 by Food Allergy Research & Education (FARE) to raise awareness of food allergies, and to make it safe for all kids to go trick-or-treating.

For all of you who have a child with food allergies, raise your hand! 

(I'm raising mine too)

Son #2 and I both have food allergies. 

He's WAY past the trick or treating age, but this would have been helpful for when he was a little kid. It's pretty hard to find candy without nuts.

The Teal Pumpkin project was organized to let kids with food allergies be able to safely trick or treat. 

Here's how you can help:

1. Buy "non-food treats" for your little trick - or - treaters
2. Put a teal pumpkin on your porch to let people know you have non-food treats (you can buy a teal pumpkin at the craft store, or paint your own!)
3. List your home on the Teal Pumpkin project map 
4. Let others know about it!

What are "non food treats"? FARE has a list of fun items you can buy for Halloween.  

FARE also has signs you can print out and put up in your windows to let people know you have non-food treats. 

They also have a few images you can download use for your Facebook, Instagram, or Twitter accounts.  

If you have kids with food allergies, please share this post so you can help them have a safe and fun Halloween too.

Now, about your kids changing their minds on costumes 6 different times....can't help you there!

Friday, September 28, 2018

What are you suffering because of asthma?


Is asthma holding you back from the things you would like to do? 

When I am teaching families about asthma, I help them to understand the Rules of 2's.  

Many times, they THINK their asthma is fine. But they're really not controlled. 

The Rules of 2's is from Baylor University in Texas and says:

If you:

  • Have symptoms/need your inhaler more than 2 times per week
  • Wake up due to asthma more than 2 times per month
  • Refill your rescue inhaler more than 2 times per year
They have also added a new measure, "Measure your peak flow at less than two times 10 (20%) from baseline with asthma symptoms?" That sounds a little confusing!


Why make a big deal about your asthma being under control? Well, are you missing out on things because of your asthma? 


Sometimes people may think, "I'm okay, I'm just having a little flare up."

So, another thing I ask families is:

 "Is asthma holding you back?"

Or 

"Are there things you CAN'T do because of your asthma?"

You can think about how often any of these things are happening:
 
  1. Waiting in a crowded emergency room
  2. Having sleepless nights
  3. Missing school or work
  4. Depression
  5. Bullying
  6. Losing a job because you were missing so much work due to asthma
  7. Hospitalizations
These ideas came from a video that a group of Community Health Workers created (along with other asthma education organizations). They wanted to help families see how much asthma is affecting their life. 

Sometimes, if you look at it that way, you may think, "Hmm. I didn't realize how much asthma is controlling my life."

We're all going to have flare ups. I had a crazy winter last year and had bronchitis 4 times! So yes, I was in Urgent care late at night (I knew it couldn't wait until morning.)

You can watch the video and see if you think your life is as good as it can be (with asthma.) It can take a while to find the right medication for your asthma. 

My 3 kids and I all have asthma, yet we are all on different medications. 

You need to find what's right for you.

And if you are missing out on a lot of things in life due to asthma, talk to your doc. You may be able to change your inhaler to a different one that can work better for you.

Life is wonderful! I would like to keep my asthma under control so I can enjoy life!  

Friday, September 14, 2018

Preparing for disasters when you have asthma





(Shutterstock) 

The weather has been a little crazy lately. 

Some parts of the U.S. are dry as a bone and plagued by wildfires and dangerous smoke.

Other areas of the U.S. are being battered by hurricanes, with crazy winds, rain and flooding.

No matter what part of the country you are in, how do you prepare when you have asthma?
I have been watching the national news stories on TV, showing empty shelves at the grocery store and long lines at the gas stations. 
Like my late father-in-law always used to say, "It costs just as much to fill up the top half of the gas tank as it does the bottom half!"
So, I try not to wait until my gas tank is on "empty" before I fill up. In fact, I know people that will fill up when their tank gets to the 1/2 way point.  

Allergy & Asthma Network has a list of things to help. 

  • Stay on your schedule for taking medicine (it's easy to miss a dose, but can cause problems if you do)
  • Medications - quick relief inhaler (Albuterol), daily controller inhaler (if you use one) and 2 epinephrine auto injectors (if you need those.)
  • Nebulizer - some need power and others run on batteries. I have an adapter so I can run my nebulizer from my car (it plugs into the cigarette lighter.) Find out what your nebulizer needs.
  • Bottled water, allergy free food (if you have food allergies) and cash to buy supplies  
  • Medical records and refill information - if your medicine is lost, it may help in getting refills. Sometimes, you may need to pay cash for a refill if it's "too soon" for your insurance to refill it. But don't go without your medicine!
  • N95 mask - can help protect your lungs 
  • Medical alert bracelet/tag - this will help rescuers to know if you have asthma, food allergies, diabetes, etc
  • Meeting place - where can you go if you need to evacuate? Do you have another family member's house you can go to? Church? School? If family members are split up, they will know where to meet. 
American Red Cross also has an Emergency Preparedness Checklist  
Remember to also keep calm (easier said than done - I know!) Since strong emotions are an asthma trigger, you could end up with an asthma attack on top of the stress of a natural disaster. 
Watch out for:
  • Crying
  • Fear
  • Anger  
  • Yelling
  • Laughter
  • Excitement

The weather can really surprise me sometimes, and it can catch you off guard. Make sure you are prepared for any sort of disaster that may come your way.

Thursday, September 6, 2018

Nose spray for anaphylaxis?

(https://www.empr.com/drugs-in-the-pipeline/epinephrine-nasal-spray-anaphylaxis-treatment-intranasal-bioavailability/article/792360/)

I was really excited to see a story on the Allergy & Asthma Facebook page about a nose spray for anaphylaxis.

The Food and Drug Administration (FDA), has given "Fast Track designation" to a Epinephrine Nasal Spray, which could be used to treat anaphylaxis.

The Fast Track is: 

"....a process designed to facilitate the development, and expedite the review of drugs to treat serious conditions and fill an unmet medical need. The purpose is to get important new drugs to the patient earlier. Fast Track addresses a broad range of serious conditions."

How do they decide if something is "serious"? It depends on if the FDA feels that the drug will:

 "have an impact on such factors as survival, day-to-day functioning, or the likelihood that the condition, if left untreated, will progress from a less severe condition to a more serious one."

For those of you with food allergies, you know that if "left untreated", our reaction will progress to a "serious condition". 

Son #2 and I have both had anaphylaxis in the last week due to cross contamination. And I would really rather use a nose spray any day over my epinephrine auto injector. 

It's SO frustrating. We always check our food, and as careful as we are, we may not know that someone has contaminated our food until we start to experience symptoms. Then we panic and wonder what happened?!

Someone must have used the same cutting board/knife/cookie tray etc for all of the food prepared.

It's frustrating that when we talk to the restaurant manager, and they say, "Really? Like that's a thing? Like it really can make you sick?"

I want to punch them!  Hard.

Yes, it can make me sick. And even kill me. 

Unless someone has a food allergy, they just don't understand how serious it is. So, we carry epinephrine auto injectors to protect ourselves.

And hopefully soon, we will be carrying a nose spray that does the same thing!  

Thursday, August 30, 2018

Can you avoid the September Epidemic?

(Shutterstock image)

First of all, what IS the September Epidemic?

Well, most parents worry about kids getting sick during cold and flu season (winter). It seems to make sense that winter is the most likely time to get sick and end up in the hospital. 

But - it's actually September! Asthma and Allergy Foundation of American (AAFA), says:

   "There is a September asthma hospitalization “epidemic.” Many more people are hospitalized for asthma shortly after school starts than at any other time of the year. The number of asthma hospitalizations peak first for school-age children, then preschool children, then adults."
 For those of you with school aged kids, that probably makes sense. I can remember being room parent for many years and helping out in my kid's classrooms. And the hygiene (or lack of) was shocking. I saw plenty of kids sneezing without covering their nose, coughing all over on their seatmate, and wiping their nose on their sleeve. 
Ugh.

That's how my kids would get sick, then their little brother or sister would get sick, then the Hubby and I would get sick. No matter how carefully I wiped down counters and door knobs, and no matter how often we washed our hands, we still picked up germs. 

The problem is that you can't control what goes on in school, especially when you have over 1,000 kids in a school. And they come to school with a cold because "Hey - it's just a cold, what's the big deal?"

Well, the big deal is that with asthma, a cold isn't "just a cold" - it can easily morph into bronchitis or pneumonia. Which for our family means another hospitalization.

So, what do you do? Short of coating everything with hand sanitizer?

There are some things we have found helpful when my kids were little. They are:

  1. Make sure you stay on your daily, controller inhaler (this will keep the swelling down in your lungs)
  2. Make sure each kid has their own rescue inhaler 
  3. Wash your hands (you should wash them for 20 seconds.) Wash them after you use the bathroom (seems obvious but you wouldn't believe how many people I see walk out of bathrooms without washing their hands.) Wash your hands or use hand sanitizer.
  4. Open the bathroom door with a paper towel (to protect yourself from those people who don't wash their hands and then touch the handle....ugh!)
  5. Sneeze into a tissue or your elbow (so you don't spread germs on everyone else).
  6.  Keep pop up hand wipes in the car to sanitize your hands after shopping
Keep an eye on your child if they get sick. They can go from bad to worse very quickly.  Nemours Hospital has a webpage that lets parents know "When to Go to the ER If Your Child Has Asthma".

So, stock up on hand sanitizer and tissues and let school begin!

Thursday, August 23, 2018

How can I keep my child out of the hospital?



(Shutterstock image)

I am asked this when I help families with asthma. And it's something I wrestled with myself when my kids were little.

I would wonder, "What a I doing wrong? My child is in the hospital AGAIN?!"

Often times, you aren't doing anything wrong! 

Some kids just have asthma that is hard to control. And sometimes kids can go from bad to worse VERY quickly. 

I found that close monitoring of their symptoms was helpful to me, including:

Using a peak flow meter 

This is an inexpensive little hand held device that you blow into as hard as you can for one second. It measures how much air you can push out of your lungs. The marker will end up on a number on the scale ( 0 - 600), which will be your "personal best". That's is YOUR number. It's pretty much the same every morning and every night (unless you start to get sick.)

What I like about the peak flow is that I knew each kid's personal best. They would use their peak flow meter every morning and every night and yell out their number. Hopefully, they were in their green zone. If it was lower than normal, I would ask them to do it again. If it was still too low, I would talk to them. I could actually hear a change in my kid's voices when they were sick. Their voices would get tighter and higher. 

A peak flow number that was dropping would give me several days warning that my child was getting sick and their lungs were getting worse. There are several things we could do (see below).



After hours/Urgent Care

Most pediatrician offices have an "after hours" network, where different doctors are on call after 5pm. Don't be afraid to use it! Kids with asthma can go downhill quickly. If you ever say to yourself, "I wonder if......" and if the next part of the question is "go to the doctor" - then GO! That's your gut telling you that something is wrong.

Many times the doctor would say, "It's just a virus." Well, pneumonia can be caused by a virus or bacterial - but it would still put my kid in the hospital. So even if it's a "virus", there are things Asthma Doc could do to help get the swelling down in my kid's lungs. He would have my child double up on their controller inhaler (depending on which one they were on).  They were usually just on a corticosteroid, not a combination inhaler, so they could safely double it for a few days. You can't always double up inhalers - it depends on which one you take. Because you can get too much of  a LABA (long acting beta agonist). 

 Sometimes the doctors would start my child on a 5 day "burst" of oral steroids (prednisone.) That would help reduce the swelling in their lungs. Other times doc would give them a steroid shot to get the medicine into their system even faster.  

We usually had a 50/50 chance of ending up in the ER after a steroid shot. But it was worth a try!

Emergency Room 

Our After Hours offices were usually open from 5 - 10pm. After that, we would go to the Emergency Room. I would always give them a quick history - this child had been hospitalized 6 times already for asthma. They seemed to take me more seriously when they knew my child had already been admitted for asthma. Keep your list of asthma medicines and doses on your phone so the ER staff can record them in your child's chart. 

Once one of my kids were admitted, did I feel like a failure? No. I had tried everything I could, but they needed more help than I was qualified to give them.  That's when I let the professionals take over and sigh in relief.

My kids needed around the clock care and needed to be hooked up to oxygen monitors so the staff can be alerted if they get worse. They have a respiratory therapist that comes in every few hours to give a breathing treatment. And they also have a nurse and doctor keeping an eye on them. That's more than I can do as a parent. 

So, hopefully the ideas above can help you monitor your child and try to keep them out of the hospital. But, if they do end up admitted - just know that you did the best you could!




 

  

Friday, August 10, 2018

Define Your Asthma

https://www.facebook.com/DefineYourAsthma/

I'm always on the lookout for new resources, and I learned about "Define Your Asthma" from (AAN) The Allergy & Asthma Network (AAN).

Who is AAN?

"Allergy & Asthma Network is the leading nonprofit organization whose mission is to end the needless death and suffering due to asthma, allergies and related conditions through outreach, education, advocacy and research."
Based in the U.S., AAN is known and trusted not just here, but internationally as well. Their CEO, Tonya Winders, is President of the Global Allergy and Asthma Patient Platform (GAAPP).

GAAPP is a global organization of allergy and asthma patient groups that was created to:


".....empowering the patient and supporting the patient voice so that decision makers in both the public and private sectors, in government and industry will be mindful of patient needs, patient desires and patient rights."

It's so important as a patient that you voice your opinion because you know your body and how your asthma responds. It helps to give feedback to your doctor, "This inhaler doesn't seem to work as well as the last one you prescribed. I'm needing to use my rescue inhaler more often now and my chest is tight all the time." 

GAAPP is one of many sponsors of Define Your Asthma. On Define Your Asthma's Facebook page, they say it was created for:

"......a severe asthma campaign with education at its heart. Its personal and inspirational approach aims to equip patients and physicians with the knowledge and confidence to start well-informed conversations.

They want to help you live your best life if you have a severe asthma diagnosis.   

Since asthma isn't a one-size-fits-all disease, it's important to know your body and what's best for you. In my family, all 3 kids and I use different inhalers for our asthma. We have daily controller inhalers and rescue inhalers for 4 people, so we have a big container with a jumble of brightly colored inhalers and spacers. We each have found one that works best for us.

So, know your body and what's right for you. 

And

Define Your Asthma. 
 

Wednesday, August 1, 2018

Fires and smoke, oh my!

(Shutterstock image)

Every summer I worry, and every summer we get forest fires and LOTS of smoke. 

Why do I worry? Well, because smoke from a forest fire almost killed my son 10 years ago. He ended up in the hospital in ICU with the "crash cart" outside his room. 

It happened so fast.

When you have asthma, smoke does a number on your lungs. 

What are the health effects of smoke?

You might have a cough and/or wheezing, a hard time breathing, and burning eyes and a runny nose.

Is it just people with asthma? AirNow says smoke can affect:

  • a person with heart or lung disease, such as heart failure, angina, ischemic heart disease, chronic obstructive pulmonary disease, emphysema or asthma.
  • an older adult, which makes you more likely to have heart or lung disease than younger people.
  • caring for children, including teenagers, because their respiratory systems are still developing, they breathe more air (and air pollution) per pound of body weight than adults, they’re more likely to be active outdoors, and they’re more likely to have asthma.
  • a person with diabetes, because you are more likely to have underlying cardiovascular disease.
  • a pregnant woman, because there could be potential health effects for both you and the developing fetus.
So now, I am VERY wary of fires and smoke. I keep the windows closed in the house and the car. And when I'm in my car, I also keep the "recirculating" air on so it doesn't pull smoke into my car when I drive. And luckily, my work has a great air filtration system and I am protected at my office.
 
So, I am lucky to be able to keep working and then heading home to a safe home environment. 

However, not everyone is so lucky. I have a friend in California that just drove 3 hours north to Oregon to be able to stay in a hotel in an area that is away from the fires and smoke. 

I had to do the same thing 10 years ago after my son was released from ICU. There was another forest fire and our valley filled with smoke again. This time the smoke was coming into my house and the kid's school. So I quickly packed things for myself and my kids and drove to family's house located 4 hours away.

It sounds drastic, but if you have asthma and are having problems breathing, and your home is filling with smoke, you may have to leave town. 

Better to keep on breathing, right?! 
 

Friday, July 13, 2018

Pricey meds


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I just opened the bill for a simple surgery and was shocked to see that it was almost $6,000! Woah!

Luckily, it was the end of my insurance year, so I had already met my deductible and out of pocket limit. So I won't have to pay a copay on that bill.

That also tells me that I have spent a LOT of money on medical care over the last year.

If you are in the same boat, what can you do?
 
We use manufacturer's coupons for our inhalers. Son #2 and daughter Kitty and I are all on long term controller (maintenance) inhalers. Even thought insurance pays for most, we still have a $75 copay each month (for each of us.)  

Luckily, I have a really good pharmacy that knows us well (since we visit them so often.....) and they will search for manufacturer's coupons for us. So, instead of paying a $75 copay for my inhaler each month, I pay $25. In fact, when I renew my prescription each year, they search for a new coupon to apply to my copay. And they do that for my son and daughter's inhalers too. 

Years ago (in 2007), Son #2 was on a biologic injection to control his severe asthma. The medicine was given as a shot once a month, and his tiny vial of medicine was $1,000 per month. And he had monthly injections for 7 years. Insurance covered most of it, but we had a $125 copay each month. 

Which doesn't sound like much - but there are 4 of us with allergies and asthma, so monthly meds really add up. We found help on a website called Needymeds. They are a sort of website where you can go to find help with co-pays, find a low income/free clinic near you, etc,

Want to see if your drug has a copay help or coupon? Click here and select from the alphabet list of medicines.  

Want to find a clinic that is free/low incomes/or pay what you can afford? Click here.

They also have a list of mental health clinics, and even substance addiction clinics.


Want to attend a camp about asthma? You can find some listed here.  

Or you can search for camps or retreats for any other medical condition too.

So, you may have to do a little digging, but there are a lot of programs out there that can help.

Good luck!


Thursday, July 5, 2018

How does surgery effect asthma?


For anyone with an upcoming surgery, there are a few things to watch for (from my experience). You should have a detailed visit with your surgeon about your medical history (and family history.) Followed up by the Surgery Nurse who will usually called the week of surgery and repeat all of the same questions (so the hospital also has your medical history).

They usually ask if you have a family history (or personal history) of diabetes, kidney disease, heart problems, asthma, bad reactions to anesthesia, allergies to latex, etc. 

For asthma, they usually want to know:

  • What medications do you take?
  • Do you take a controller medicine? Or just a rescue inhaler?
  • Is your asthma under control?
It's helpful to keep a list of medications on your phone, so it you can easily tell them the names and doses of all of the medicine you take. Surgery Nurse will usually ask you to bring your inhaler to the hospital too.

So, now that they had all of their information about your medication and medical history, what about the surgery?

Some people find that your oxygen level can drop during the surgery. That can happen when they put the tube down your throat (intubate you) to help you breathe during surgery. It can help to keep your oxygen turned up during surgery.

Sometimes people are groggy after surgery and will pull off their oxygen mask without realizing it. That can be followed by a faint "Beep, beep, beep, beep" of the alarm going off for your oxygen monitor. You may hear a "Breathe! Breathe! Breathe!" from the nurse in the recovery room. You can ask them beforehand to put your mask back on if you pull it off in the recovery room.

After surgery, you may notice that your lungs don't "feel right." Sometimes people can start to breath really shallow and have a hard time taking a deep breathe. That can lead to pneumonia. 

And if you start coughing, you can pull the stitches out of the surgery site. They may have you use an "Incentive Spirometer" to help expand your lungs. If you aren't sure what an Incentive Spirometer is, you can watch a short video here to see how they work.


It may also help to use your nebulizer and have a breathing treatment. 

So, if you have a surgery day coming up, make sure you are prepared. It helps to keep taking your daily, controller inhaler and make sure you don't miss any doses after surgery either!

Keep your inhaler or nebulizer handy and make sure you call your doc if something doesn't feel right. 


Monday, June 25, 2018

Fireworks, smoke and asthma

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Summer has flown by and I realized that Independence Day is just around the corner. That means wearing anything I can find that is red, white or blue. Then going to the annual parade, and watching fireworks.

Normally, we just watch aerial fireworks from a nearby city celebration. We found a great spot overlooking the valley, and we can see the fireworks perfectly.  But since we are a few miles away, we don't have to worry about the smoke. 

This year, we moved into a new neighborhood. The new neighbors were telling us about an annual  4th of July tradition. They hold a neighborhood BBQ, parade for the kiddos, and end the night with a "Cul de sac of Fire."

Hhhmm. I was okay until they mentioned fireworks. They make me VERY worried. Smoke from fireworks landed Son #2 in ICU when he was 8 years old, and it was one VERY scary time for us. 

So, I am very worried about fireworks and smoke. Not only do I worry about Son #2, but I also have 2 other children with asthma (and I also have asthma.) So we could all have an asthma attack, ER visit or hospitalization.

In fact, Son #2 is older now, but was just saying that he dreads 4th of July and the fireworks because he struggles to breath for several days (because it takes that long for the air to clear out.) Our street is usually so smoky from fireworks that we can hardly see the house across the street!

I have asthma attacks EVERY time I try to go outside to watch the neighborhood fireworks, so with the Cul de sac of Fire, I will be watching from inside my house! (With all of the doors and windows closed!) 

The American College of  Allergy, Asthma & Immunology (ACAAI) says:

"Fireworks and campfires are a staple of the 4th of July, but smoke can cause asthma symptoms to flare. Allergists recommend keeping your distance from campfires – and if you have to be near one, sit upwind if possible. If you can’t resist the fireworks, consider wearing a NIOSH N95 rated filter mask to keep smoke out of your lungs, and always carry your reliever inhaler."

 If you are going to be around fireworks on 4th of July, be careful! Keep your distance (or watch them from a building!) and make sure you have your inhaler or nebulizer handy!

 

 

Wednesday, June 20, 2018

Horses, teenagers and asthma

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There comes a time when you realize that you taught your kids well and they actually LISTENED to what you said!

As a Mom with asthma, who has 3 adult children with asthma, our life is always changing.

We all have different asthma triggers, and we try to avoid our triggers as much as we can.

In fact, when Daughter Kitty was young, she loved horses. So, she started riding lessons. But, she kept having a LOT of problems with her allergies while she was riding. Those allergies would trigger an asthma attack.

The arena where she took lessons was a long drive from our house. So, she would take her allergy and asthma medicine, but then still have problems while she was riding. She would change her shirt to try to get most of the dirt and horse dander off before we drove home. But she would still be sneezing, wheezing, and coughing.

So, we ended those lessons.

Now she is older, and two of her high school buddies also love horses and work at a barn. Which is fabulous - except when they get together for a BBQ after work.

During the BBQ, Kitty noticed she was sneezing, wheezing and coughing. She and her friends (who also have asthma) figured out it was the horse dander that was still on her friend's clothing. 

So, the 3 of them figured out a plan. Her friends would go home first, shower and change clothes, and then come over for the next BBQ.

I was so happy, because I knew that she had learned how to take care of herself and her asthma. She's headed to college, and I won't always be around. So my kids have to learn how to take care of their allergies and asthma. 

So, it was a proud mama moment!

Friday, June 15, 2018

"Stock albuterol" inhalers in schools

(Infographic courtesy of Allergy & Asthma Network) 

What is "stock albuterol?" 

Well, that means schools can "stock" (or store) an albuterol inhaler in school - in case someone has an emergency.

 Shouldn't everyone have their own inhaler? Well, in a perfect world, yes. Inhalers are small and can be easily lost, left at home, or even expire before they are empty.

I have heard many stories of families that can't afford an inhaler, so 3 or 4 kids are sharing one inhaler at school. Or sometimes mom takes the inhaler to work, and if the school nurse calls her, she will take the inhaler to the school for her child to use. They family shares 1 inhaler between mom or dad's office and the school.

I don't know about any of you, but I had moments of panic when I couldn't find my inhaler - even though I KNEW it was in my purse.


This is why there are stock inhalers in schools.


11 states allow schools to stock albuterol inhalers. Is your state one of the lucky states? You can check the graphic up above. The dark blue states are schools that have stock albuterol laws. Yellow states have guidelines.

Looks like my state needs some work!

What about your state? Ask your school nurse, superintendent or your local legislator why your school doesn't allow stock albuterol inhaler for emergencies. 

You can also contact Allergy & Asthma Network. They are based in Virginia and are:

"Allergy & Asthma Network is the leading nonprofit organization whose mission is to end the needless death and suffering due to asthma, allergies and related conditions through outreach, education, advocacy and research."
Allergy & Asthma Network sponsor a Day on Capitol Hill in Washington DC each May. They work tirelessly on laws to protect families and help create new laws for families with allergies and asthma.

I was lucky enough to go to DC and talk to my legislators. It's not that scary, you just share your story of living with allergies and asthma. Many of us have some pretty scary and powerful stories of dealing with allergies or asthma. You can talk to your local or state legislators too.

Allergy & Asthma Network can explain how to talk to your local legislators, PTA, etc and educate them about important issues with allergies and asthma. 


Lend your voice! You can help make a difference!


Wednesday, June 6, 2018

Don't forget asthma inhalers when school is out!


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School is out for summer in most states, and that means emptying out the backpack your kids have been carrying around all year (how long has THAT been in there?)
 
As you empty out their backpacks, make sure you check for their asthma inhaler.
 
Some kids will have an inhaler at home and another one at school. Sometimes you can forget about the inhaler at school. 
 
Older kids usually carry their inhalers in their backpacks, but the younger kids might have theirs stored in the teacher's desk.
 
By the way, did you know it's legal in every state in American for kids to carry their inhaler with them at school? American Lung Association says:
 
"Although all 50 states and the District of Columbia have passed a law allowing students to carry and use inhalers at school, some kids are still being denied access to these lifesaving medications during the school day."
 
When my kids were little, I would fill out a permission form at the beginning of every school year and Asthma Specialist would sign it. That would allow them to legally carry their inhaler with them at all times (even though schools are a drug free zone.)
 
Since our family has had LOTS of experience with asthma (it's been 18 years since the 3 kids and I were diagnosed - and we had had 12 hospitalizations for asthma). So, we are very used to inhalers and nebulizers. My kids were responsible enough to carry their inhaler when they were very young. 
 
But other families may find that young kids goof off with inhalers (spray it in their air, let their friends play with it, etc.) So they may have the teacher keep it in his or her desk. 
 
So, do the "end of the year dump"of the backpack and look for your kid's inhaler. If you can't find it, you may have to double check with their teacher or school nurse.
 
Chances are you are going to need that over the summer!   
 
 








Wednesday, May 30, 2018

Asthma Mom is sick, now what?

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Well, as though this year wasn't bad enough, I am sick with bronchitis (again) - 4th time since November.

What's going on? Well, I've been traveling - and airplanes and airports are some of the germiest places you can be.

For anyone who regularly reads my blog, you know that I am a germaphobe. However, my husband (who likes to come along on my work trips if I'm going to a cool city) isn't a germaphobe.

I can easily go through a whole package of antibacterial hand wipes during a 4 day trip. That nasty tray on the airplane? It's getting wiped down before I have my pretzels and Coke!

Think it's not that dirty? CNN has a slide show called "Journeys with Germs" What are the dirtiest things on the airplane?"  You might be surprised!  

Think of everything else you touch - door knobs, elevator buttons, the TV remote in the hotel. 

I use the antibacterial wipes like a mad woman. And follow it up with hand sanitizer.

The Hubby? Not so much. 

Even though I gave him a travel pack of wipes and practically begged him to slip them in his pocket and use them while he was sight seeing.

Did it happen? Nope. 

This is the 4th trip we have had, and this is the 4th time he has become sick from out trip. So he coughs and sneezes and doesn't wash his hands, and then I get sick.

So, what happens when the Mom is sick? Well, it's almost comical - watching my family stumbling around the kitchen, opening cupboards, the fridge and freezer - like a magical meal will just appear! Not while Mom is sick.

They are a little clueless when it comes to Mom being sick. Usually, I check to see if the kids need a cold washcloth for their forehead. Popsicles? Snack? Movie to watch? 

Nobody checks on me when I'm sick.

 So, I just pull the nebulizer out and put it close to me so I can have a breathing treatment while I'm propped up on the couch. I pile up my cough drops, prescription cough medicine, box of tissues and throat lozenges. Then I keep a note pad handy so I can write down what time I have each medicine (so I know when I can have the next dose.) 

I tend to get a little fuzzy headed when I'm sick, so it's better for me to write down when I take my meds so I don't forget any of them or take them at the wrong time.

I can image all of you moms reading this and laughing. Because you get it. Our families can win and complain when they're sick and we take care of them. 

But no one takes care of mom when we are sick.

So good luck to all of the rest of you moms out there!