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.
If I go back to my late January 2015 CF appointment I was blowing only a 62 FEV1 (FEV1 liters 2.58). All I know is the combination of adding pulmozyme to my every day treatment with the addition of the AerobiKa, Aeroeclipse R Ban with hypertonic saline while vesting has changed my lung health forever. I blew my highest lung function about 1.5 weeks ago of 110 FEV1 (FEV1 liters 4.67). These are not clinic official results but I know that my lung health has improved more than I could ever imagine.
The below pictures are from my handheld PFT monitor that I use at home. The dates on the screen are off by a month.
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.
AeroEclipse R Ban Link
I want to illustrate some of the pros/cons of the AerobiKa and Aeroeclipse R Ban.
· 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.