Monday, March 9, 2015

AerobiKa, AeroEclipse R Ban, - My Personal Lung Health Evaluation


I think most of us love routines right? I know at least I do because my body functions better or accommodates to a routine.  But sometimes there comes a point where you need to change up the routine especially if you are wanting to see if you can achieve different results.  I think we all need to evaluate ourselves and Albert Einstein said it best in his definition of insanity………….”doing the same thing over and over again, and expecting different results.”   For me, it was time for a personal evaluation of my lung health.  What do I need to do to improve on my lung health or what do I need to stop/start doing to improve on my lung health????

Why am I even talking about this personal evaluation? I guess I had MY own wakeup call at my last CF clinic appointment at the end of January.  Overall, I felt pretty good but I saw a decreasing trend on my at home PFT monitor.  I wasn’t feeling sick or an exacerbation coming on so I didn’t know what to think.  I will be the first to tell you as well as my dr. that putting so much stock in a PFT is NOT a good idea as it’s basically just one piece of the puzzle and at best a piece that has way to many inputs (PFT technique, nerves, individual administering PFT, etc).  But that clinic appointment I blew the lowest PFT I have ever blown in my life at a 62, mind you my baseline PFT is high 60s to low 70s.  My FVC or the “number” of how I “actually” feel was in the 90s.  Numbers wise, the test tells me I am correct that I feel good but my FEV1 tells me a different story.  I asked my dr. why does my FVC always read higher than my FEV1? His response was usually FVC and FEV1 correlate together. So why am I not seeing a higher FEV1?    

I was nervous that maybe these lower FEV1’s was the start of a decline in my health and I wanted to do something about it as the clinic appointment before last I only blew a 66.  The bacteria culture came back a few days after my appointment and NO new bacteria is growing so no antibiotics at this time.  It was time now to perform my own personal evaluation of my lung heaIth

Before I left clinic that day, I told my dr. that I wanted to try pulmozyme again.  I tried pulmozyme 6 years ago and felt it really did more harm than help for my lungs/mucus.  I noticed my mucus becoming way to thin and hard to cough up as well as being woken up through the night with coughing fits.  I have officially been inhaling pulmozyme for 6 weeks now at 5 pm on most days to eliminate the night cough. So far so good with no night cough.  But I really haven’t seen any changes in thinner mucus or more mucus production within the first 2 weeks of using pulmozyme. Who knows maybe it is helping me more than I really think and I am sure it is!  So I really wanted to add something else to my lung health………

I also wanted to try something else for my airway clearance.  I started researching about different forms of airway treatment for cystic fibrosis.  To my excitement, I found something I really wanted to try called the AerobiKa which is an oscillating positive expiratory pressure.  You may have heard of the flutter valve or the acapella which is positive expiratory pressure device.  But the AerobiKa has the ability to combine a nebulizer treatment (Aeroeclipse R Ban) while receiving oscillating positive pressure in the lungs.  What?? Really finally a device that combines an ACTIVE form of treatment to our lungs compared to the passive “vest” treatments we have been doing for decades?!?! After reading a few links on the manufactures website, I was sold.  Monaghan Medical Corp even created a superior nebulizer called the Aeroeclipse R Ban.  The Aeroeclipse R Ban nebulizer is pretty much a must have as well.  The nebulizer operates with breath actuated technology.  This is when you inhale, the medicine is released from the nebulizer and upon exhale the medicine is not lost into the environment like nebulizers of old (pari devices)

I have now been using the AerobiKa with the Aeroeclipse R Ban nebulizer for the past 6 weeks.  I can tell without a single doubt that the combination of the Aerobika, Aeroeclipse R Ban while using hypertonic saline as well as using my vest has given me a new LIFE! I know it sounds so extreme but I feel that I have added years even decades to my life because of these devices.   The combination of the devices has really made my lungs feel like they are balloons.  I started noticing a difference in my lungs within the first few days.  The mucus clearance while using the devices is something that I have never seen in all of my 29 years of life.  I have been able to cough out mucus within the first few minutes of use.  The Aerobika is an active form of treatment on my lungs.  As I have to breathe through the device to induce the oscillating in my lungs while nebbing my hypertonic saline.  

 In the past, I would just sit in a chair connected to my vest with a nebulizer in my mouth inhaling and exhaling hoping to move mucus out of my lungs.  I would be lucky to get less than a handful of good productive coughs before the new devices.  I am now getting countless productive coughs due to the constant active treatment with the AerobiKa and Aeroeclipse.  My lungs actually feel like they have been running a marathon every time I use the two together.  I just feel that I can now get a deeper fuller breath without any kind of trapping in my lungs.  It’s a feeling that I hope will continue for a very long time and I owe it to thinking of ways to improve my lung health.

So for those who want to see if these devices will work for you I suggest you contact your CF clinic before changing or adding to any routine you have.  I also know that others may not have found or will find the same success that I have but you just never know. 

Aerobika Link

AeroEclipse R Ban Link

I want to illustrate some of the pros/cons of the AerobiKa and Aeroeclipse R Ban.
AerobiKa –


·         Easy to assembly with basically only 4 pieces.  You cannot put this back together wrong.

·         Easy to sanitize.  You can put it in dishwasher or sanitize like you would your flutter or other pep devices.  I have found that putting the AerobiKa in my Wabi (baby bottle sterilizer) works perfectly.  I sterilize after every use.

·         The ability to induce a cough. You can set the resistance level of the device to whatever fits your lungs.  I prefer to use the device at the lower settings as it induces a cough a lot faster for me.  Reminder this is not a strong man competition so trying to blow your lungs out isn’t the point.  The point is to induce a productive cough where you clear mucus.  I also like to change the resistance levels blowing a few blows at each level and then coming back down to the lowest setting. That seems to be most productive for me.

·         Easy to carry with you wherever you go.  We all know traveling with the vest is NOT a fun task as it takes up so much room and can be a nightmare going through airport security. The AerobiKa is very travel friendly. 

·         The ability to combine an oscillating positive expiratory pressure with a nebulizer.  Why hasn’t anyone thought of a device like this yet? This device makes you feel like you are actually receiving an “active” treatment as opposed to a “passive” treatment like the vest.  After 30 minutes using the Aerobika, Aeroeclipse R Ban while inhaling hypertonic saline while vesting it my lungs feel as if I have been sprinting for over 30 minutes.


·         Occasionally, there are times when the unit will not oscillate at the highest frequency.  That has to do with the inner mechanics of the device.  This to me is not a major issue as the device is beyond useful at lower frequencies.   But the manufacture is aware of the issue and is working on a fix for the issue.

·         The 4 pieces do take up a lot of room in my Wabi baby bottle sanitizer but that’s a minor con. 

·         You may need to buy a higher powered compressor to get the AerobiKa and the Aeroeclipse compressor to function together.  Reason, the Aeroeclipse needs enough PSI to make the medicine come out in a fine particle to reach the lower lungs. 

Aeroeclipse R Ban


·         Option for breath actuated or continuous flow device.  Finally, someone created a device that doesn’t give medicine to the person in the same room as me!!! I am referring to the medicine will only come out when you inhale.  The exhale is contained in the device.  You still have the option to do continuous flow inhales and exhales like a pari device.   

·         Easy to sanitize.  The device fits well in my Wabi baby bottle sanitizer. I sterilize after every use. 

·         I feel that I am able to get a better airway treatment with the device versus my Pari nebs.  I do not have any issues with clogging or foaming of my hypertonic saline. 

·         Fits perfectly with the AerobiKa device when combining treatment.  I tried my Pari nebs and they don’t compare to fitting properly with the AerobiKa.


·         I miss the handle in the back like Pari nebs.  But that is not going to stop me from using this. 

·          When I sanitize, it seems to take longer to fully dry the actual middle component of the device where you can choose breath actuated or continuous flow mode. 
If you have any questions please let me know. I will try to do my best to answer
any of the questions. 

Friday, January 9, 2015

Back To Blogging! Update On All Things!

I didn’t forget I have this thing called a blog……………But what I did forget is to take the time to share with others what is going on with my life, my family life, and my health.   If you do follow me on Facebook you pretty much know what is going on with my current lifestyle.  I am super busy every single day that it’s basically almost near impossible to find “good” adequate time in my life to keep this blog updated.  But I know there are some people out there who may be wondering what is going on with me and why I haven’t been on here in what seems like many moons ago.  I can tell you honestly, I do miss writing on here and sharing my life with many of you because I think it “helps” people.  More importantly, there are people who still come to this blog to read about the afflovest, kalydeco for residual mutations, IVF, CF, our daughter, and or just to see if I still exist.  To me that makes me want to keep writing. 

I will start with the family.  Alayna continues to keep us very active at home.  She never stops moving or I should say getting into something when she is NOT sleeping.  I know I never did a 24 month blog but I can say she is one healthy tall and at a perfect weight for her age.  We have successfully mastered potty training.  I don’t recall what actual month that took place but she basically was potty trained before she was out of diapers.  The potty training was an easy breezy experience and I have to give credit all to Maria as she really did most of the training.  No more diapers minus the nighttime diaper and she doesn’t even pee at night equals two very happy parents.   Now only if we could get her to sleep in her own bed all night we would be beyond happy.  Note to all future parents out there………NEVER let your child sleep in your bed.  Oh wait I am getting the payback for what I did to my own parents. 

In other Alayna news, she continues to learn new things.  She talks in full sentences.  It’s just amazing to see in less than 26 months she is already like a grown child.  Where did the baby go???? She still loves dancing, singing to any songs especially Taylor Swift. I know we will be preparing to attend many dance lessons and shelling out lots of money for it.  But it will be great!  The more active she is the better! I could go on and on about all the new things that Alayna has mastered but that would eat up my entire blog.  We are just so thankful to have her in our lives.  She has truly completed our life!

I cannot ever forget about my best friend………..I am so grateful to be married to my best friend!  Yes, if you have the chance to marry your best friend I suggest it.  Why? I say you will find marriage bliss if you marry your best friend.  I could truly never express in words what she means to me.  You know the PRICELESS commericials…….Let’s just say I could make one for her because honestly I KNOW I couldn’t have found a better best friend, a wife, a mother, and soulmate! 

As for Maria’s health some of you may have wondered what ever happened to all those liver enzyme tests.  We are happy to say that those elevated liver enzymes are no longer an issue in this household.  She is definitely a trooper with all the obstacles she has had to endure to have our Alayna and even the aftermath of the birth still lingers.  But maybe just maybe that horrific birth will be a distant memory of the past. 

If you made it this far in my blog post thank you.  Now if you want to read about boring old me…..Thanks for following along.  I promise I will not bore you more than need be. 

I continue to live a beyond busy life as I said above.  It’s a challenge to fit everything in a 24 hour day. I know many of you know who work full time, have a child, have a marriage, try to get enough sleep, stay on top of our CF with treatments etc. understand where I am coming from.  There are some people who ask me how do you function every day John? My answer to that is I don’t really know how I do it but I just keep pushing on.  I do have to give a big THANK YOU to Maria who really keeps this family functioning at a high level.  If I didn’t have her in my life I think we would all be a mess. 

I can tell you I am feeling fantastic the last few months and weeks.  I have actually seen my at home PFTs hit 79%.  It’s not official but I consider it accurate as the device I use is basically identical to readings I get at CF clinic.  I haven’t seen the close to 80% mark since last July.  I credit the increase in PFT to my commitment to using the affLOVEst every day and 4 vials of HTS a day.  Speaking of commitment to compliance, my compliance streak ended this past November.  I successfully did all my nebs, vest, and pills for well over 600 days.  This is something I am beyond proud of because I don’t know how I find time to do all that I do and have time to NOT miss a treatment of pill.   I have felt fantastic the last 600 plus days! I am due to go back to CF  clinic near the end of the month. So we will see what is new there. I hope to have a new blog come out of that appointment. 

The future of this blog…………I don’t know how often I will be blogging but I do know I will continue this for well into the future.  As long as I know there are readers out there and I have the time I will write.  So going forward………I have some more CF interviews I need to post ( I have NOT forgotten about you).  I get a good amount of questions on Facebook about things I do to stay healthy or what devices I am using so I think I should write a blog or two about those Q & A’s.   I also will be giving an update on the afflovest which I still LOVE!  I hope those blogs will be useful to my readers out there.  If there are any topics you would like for me to cover feel free to comment below. 

Until next time…………..Keep LIVING out your DREAMS and FIGHTING as hard as you can for more TOMORROWS!