Thursday, June 12, 2014

AFFLO Vest – It’s changing my life!

Many people are interested in this new device called the Afflo vest.  For all of us who are involved in the CF community this is something that everyone wants to know more about and even try.  I am writing this today to provide my honest opinion and feedback on the Afflo vest. 

For starters let me begin by stating I DO NOT represent Afflo vest, its company, employees or any other affiliated party in any way.  I did purchase this device for all those who may be wondering!   What I am about to share with you is MY unbiased review and opinion of the Afflo vest.

I will start by listing the pros/cons. Under each of the pros/cons I will provide more detail. 




PROS

1.)    Rechargeable lithium Battery powered vest with optional cigarette lighter charger (12v) and electrical plug in option.

I think from the dawn of the traditional vests we all wanted something to be more portable with the same effect.  For me, I believe the Afflo has accomplished this.  I no longer have to sit at my desk and surf the net.  I have now, been able to bring my Afflo basically anywhere I go.  Just the other day I was able to “Afflo” (get used to the NEW word Afflo, Affloed, and Affloing as it will be used often) while supervising my 1.5 year old daughter while my wife was cooking dinner.  My wife loved this 100 times over as we were killing the vest and the dinner with one stone!  In the days of old with my traditional vest this never would happen.  I was confined to my office and not being a productive husband or father. 

The cigarette lighter charger is wonderful if your lithium ion battery is running low while you are traveling in the car. (The lithium ion battery will last you about 4 treatments if you use it for 20-30 minutes a treatment.)  Yes, I even have affloed now many times in the car.  In fact, this is something I think that will only help us get in our treatment. Many of us travel to work or run errands on a daily basis.  Instead of just sitting in the car listening to music you can now get your Afllo and get your airway treatment in.  Oh and you can also listen to music, neb, and afflo in the car without cranking the music up to its highest volume. 

To me the ability to be portable and get treatments in is a game changer especially for many of us who either have busy lifestyles raising children, going to work, and running errands. There will now be NO EXCUSE to miss a single treatment with the Afflo device. 


2.)    No tubes or electrical cords!

In the traditional vest system you are tethered with a tube or two and an electrical cord.  The Afflo has no tubes or cords.  No tubes equates to no more of those tubes popping off during vest time.  I always hated it when the tubes popped off and deflated my vest.  No tubes plus no electrical cords equals doing my treatment anywhere on earth assuming my battery is charged.


3.)    No inflatable air bladder like traditional vest systems.

The traditional vest systems use an air bladder system that is required to be filled with the air compressor and generator.  This air bladder system I feel squeezes us way to hard and suffocates many of us while we try to neb and receive effective airway clearance.  The Afflo does not have an air bladder system nor does it squeeze you to death like the traditional vest.  I feel that without the air bladder strangling me that I am now able to get an effective nebulization in compared to the traditional vest. This is another game changer compared to traditional vests. 


4.)    Very quiet during operation.

As I mentioned above this has to be the quietest vest on the market. There is no more cranking up the volume on the radio, tv, or computer to hear your favorite show, music, or game.  I LOVE this about the Afflo.  I can now watch tv or listen to music without damaging my hearing or waking up our sleeping toddler.  The quiet operation will be so welcomed by many parents with CF as they care for their child!!  


5.)    Afflo vest targets all areas of lungs.  Chest, lower lobes, back etc. whereas traditional vest system was suffocating.

Unlike traditional vest systems, the Afflo vest targets all areas of the lungs.  In fact, since its so portable you can lay down on your side, on your back back, or on your stomach, or even do a head stand! With all the various treatment settings you can really feel all of your lung lobes getting a full airway clearance.  Again, the Afflo is superior to me in this category compared to any other vest. 


6.)    3 treatment settings with 3 intensity levels

As I mentioned above, with all these settings and intensity levels I feel that my lungs are receiving superior airway clearance. In fact, my lungs have never felt this clear in years!  There is a soft, medium and intense intensity setting.  The range of hz is 5 for low then about 13 hz for medium and 20 hz for intense.  The 3 treatment settings are drainage, vibration, and percussion.  I feel the Afflo vibrates your lungs so differently compared to the traditional vests.  You receive the same voice vibration like you do traditional vests so I know something is being shaken up inside. 

7.)    Ease of use and travel ability

The Afflo vest is a very easy device to operate and use.  If you have ever used a traditional vest before you will have no problem using this.  It also comes with a nice bag that you can use for traveling.  Since the vest itself weighs a little less than 10 pounds it’s not heavy to carry a long. I have even used the Afflo walking around the house and felt that it has been just as effective as sitting down.  For all the active CFers out there I assume you could even use this on the treadmill or riding a bike. 


8.)    You can nebulize while using the Afflo

To me another game changer is you can nebulize effectively while using the afflo.  I always felt the traditional vest squeezed me so much that it was difficult to effectively inhale and exhale a nebulized medicine.  With the afflo you can still get a good deep breath in and feel the vibration in your lungs.   

9.)    Compared to the traditional vest Afflo is superior.

The point of this last bullet is just for me to say I feel that the Afflo is superior to the traditional vests on many levels.  The ease of mobility now with Afflo cannot be matched.  The way the Afflo hits all of my lung lobes is truly a game changer.  The mucus clearance and mucus secretions I have now are much thinner and easier to get out of my lungs. 


CONS

1.)    The Afflo may be too heavy for kids and cf patients who may have declined health. That is if they want to walk around with the afflo vest on. 

Currently Afflo vests DO NOT fit kids below the age of 8 years old.  So there is a con for all the parents to young cfers.  But I do hope the maker of the Afflo vest will figure a way to make them for younger children. 

Yes, one of the pros is that this device weighs 10 pounds but that weight may be an issue for anyone who is experiencing declined health. You can always sit down with the Afflo and watch tv, read a book, use the computer, or even lay down. 


2.)    The lithium ion battery could last a little longer or maybe have a more visible reminder to charge the battery.

Any battery operated device will have limitations.  So yes, I wish the battery lasted for 10 treatments but I also do not want to carry a 5 pound battery around either.  There is a battery indicator light on the battery to let you know when it needs recharged.  But in today’s world where people want immediate results or access like a cell phone battery life this is a shortcoming.  I don’t see it as a problem just something you have to remember to do, plug in that battery to recharge.  But there are also regular wall hook ups and car adapter to use if you forget to charge the battery. 


3.)    I think there should be more intensity level settings. 

Yes, there are 3 intensity levels but many of us are used to the traditional vests where you can select the hz and frequency.  I feel the soft mode doesn’t do anything for me.  I mainly use the medium and intense modes. 


4.)    The buttons holding the battery in place are tough to undue.

The buttons holding the battery are not very easy to unsnap.  Yes, that is a picky statement but something I have observed while using the afflo. 

5.)    Afllo needs to create a pouch for the nebulizer machine or offer a nebulizer machine that runs on batteries as well.

A downfall to the Afflo is if you want to neb and walk around the neighborhood you need another battery operated compressor device.  Thankfully I have the Pari Trek which can be operated with a lithium battery.  Also, a pouch to put the compressor in the Afflo would be handy as opposed to carrying the compressor around. 

6.)    My biggest con comes from what I have heard drs and respiratory therapist saying about Afflo. DO NOT JUDGE A BOOK BY IT’S COVER!

This by far is not a CON that Afflo has, but a CON I see in the CF community.  There are so many doctors and respiratory therapists claiming the Afflo isn’t as good as the traditional vest treatments. Hmm, lovely! So we have the doctors and respiratory therapists not buying off on the Afflo.  Why is that? Do they themselves have CF?  That is the first question I would ask.  How would a person without CF be able to tell you that the old school hand PT is better than the traditional vest and the traditional vest is better than the Afflo?  They honestly cannot tell us that.  There is no better way to know if this device works for you unless you actually use it. 

I like to compare the traditional vest as the typewriter and the afflo vest as the computer.  We know the typewriter is old and out dated because the computer has more to offer us.  This is how I feel about the afflo.  There is a reason why we no longer do traditional manual PT and there will soon be many people who will switch from the traditional vest to the afflo. 



JOHN’S NOTES:

Again, all this is based on my own personal opinion and use of the afflo device.  As many of us all know that no two CFers are alike so the only way to know if this device works for you is to try it.  I feel though that I was a good subject to base this review on as I have been 100% compliant for almost 500 days.  I also made a point to discontinue the use of my traditional vest to see if I noticed afflo vest making a difference. 

I can honestly say after using the Afflo for a little over 2 weeks now I wouldn’t ever go back to the traditional vest.  My breathing is so much better and my mucus is basically non existent.  Yes, the first week or so I was clearing many old mucus plugs and could tell something was working.  I have also been able to get airway clearance in the car and outside with my daughter.  So I have increased my treatment time in a day from 1 hour to about 1 hour and 15 mins.  More treatment is only better for my lungs!


I will leave you all with this exciting news I have had with my at home PFT monitor. I actually sent these below paragraphs to the manufacturer of Afflo……

In fact, I have an at home lung function monitor to use just to gauge where my lung functions are before I go to clinic every 3 months.  For all those who are not familiar with lung function testing, it is a marker of how much damage has taken place in your lungs.  A reading from 80-120% FEV1 is considered a normal lung function score.  For many of us in the cystic fibrosis community we experience debilitating lung infections that decrease our lung functions overtime which can result in lung transplants and also death.

The last official CF clinic I had was in mid April 2014 and I blew a 74% FEV1.  But I still wanted to get my FEV1 back into the 80s or as high as possible.  Yesterday, I put my lung function to the test after using the AFFLO vest religiously for these past 6 days.  I was beyond shocked to see a number I have not seen since I was a teenager.  The number I blew was 81% FEV1! In fact, I blew again and produced this same result. 

I told my wife my score and her first comment was this…..”WOW, the last time you were in the 80% was when I met you back in high school!” Yes, that was when I was 16 years old.  It has been 13 years since I blew a number in the 80s.  All I can say is I feel like I gained back 13 years of my life!

The AFFLO vest is something that is working for me and I feel it will work for many other cystic fibrosis patients around the world

Just as the title says “AFFLO Vest – It’s changing my life!”  I want you all to try this device to see if it will work for you.  The people at the Afflo company have been so helpful and wonderful to work with.  If you would like to see if you can get an Afflo call this number, 1-888-711-1145.

http://www.afflovest.com/

















Wednesday, June 11, 2014

CF Community Interview - Lesa (Parent)

In this interview, you will read what it was like for Lesa to find out her 3 ½ year old was diagnosed with CF.  There is a common theme that I find when talking with newly diagnosed parents that have a CFer.  That theme is my world is flipped upside down once they hear the words cystic fibrosis.  Many people have never even heard the words cystic fibrosis or may not know what the disease really is.  But when a parent finds out that their child was born with a disease they want to learn and read everything that they possibly can about it. 

So where do we go? We go to dr. google and research things to no end. In fact it may feel like life is just shutdown.  But once we get educated from drs., the internet (with good stories) our fears become more tamed.  I think many people have found a real comfort zone in these interviews and this blog that I try to write.  So without further blabbing by me here is Lesa’s story about her daughter Shelby!


NAME: Lesa



CFer: Shelby (daughter) diagnosed 3 ½ years old and is now 11 years old. 











Please share your child’s cystic fibrosis diagnosis (Include age, how you felt at the time of diagnosis, how was life before and after diagnosis)? Before your child was diagnosed with cystic fibrosis, have you ever heard of cystic fibrosis? 

My daughter Shelby was 3 1/2 years old when she was diagnosed with CF! She is eleven now. 
I had only heard of CF before but knew absolutely nothing about it! She was diagnosed by a sweat test then later confirmed with a blood test to type it. She has the Double Delta 508. 
Words cannot describe how I felt as a mom at that time! I read all I could online and I really think my life just shut down for a while! We went back for her 1st clinic appointment where we sat and talked at length with our "team".


How did you cope with the diagnosis?

My worries went from whether she would ever be able to go to day care/preschool to everyday life to school, college. She is eleven now and being eight  years later,  Things are going good.  Of course we have out op and down moments. I still worry about all these things. She has only had one hospital stay. 
I did send her to 4K  at a private school where she attended until fourth grade when I decided after many sleepless nights and prayers to put her in public school! She misses more school than is allowed with sick days which I had to work out with the school system and Sure she has had a few more colds and viruses going to the public school.  I have a really hard time dealing with germs and the fear she will get sick which she gives me a hard time about. But, I guess that is just my job as a parent! 


If we can go back to that day you found out your child had cystic fibrosis, what would you have liked to be told by a doctor? Where did you go to find more information about cystic fibrosis?

I am not sure what my doctors could have told me that would have made it easier! The facts about CF are just what they are and it is scary for a parent to hear!  But, The first doctor who I complained about and eventually got changed to another one was not very optimistic about a cure! I mentioned to him I had read about the studies and what things they were working on, which, this was 8 years ago but he told me they had been working on a cure for twenty years and not to get my hopes up! So I guess a doctor who was a little more hopeful of a cure would have really been better! Yes, he no longer works in this children's hospital at all now!! 

This has been one of the only blogs that has promising stories of real people! So thankful I found this and can even share our own story. 
Wish I had read some of these stories a few years ago! 
But there is hope now. So  close to getting  drugs that may make a real difference in the CF world! 






What has been the biggest challenge for you dealing with cystic fibrosis?

The biggest challenge beside steering clear of germs like pseaudomonas which she now have again for the third time and the doctor says is a harder one to kill, is holding my child back from going places like summer camp for fear she will not get ANY of her medicines or breathing treatments while gone!  All of her friends go and I just can not let her go and this bothers her!  Also, I do not let her spend nights with friends often because I hate skipping pills or treatments and she is still at eleven very hush, hush about it with her friends! She doesn't mind taking enzymes with food in front of them but she doesn't want them to see any of the other stuff at her house such as her vest when they come over! 
Another big challenge for her is keeping her weight up and where her doctor's want it.  Ensure and lots if cooking with butter and cheese! 

Please share with us any triumphs you or your child has accomplished because of cystic fibrosis?

I think she my daughter gets tired more easily than her friends her age but she is a strong girl! She pushes it sometimes when sick for sure.  She is on two different dance teams, a competing dance team and ballet and goes to dance classes 5 hours a week, sometimes more when performances are scheduled such as The Nutcracker at Christmas or competitions out of town. 
She hopes to get her ballet pointe shoes and compete in solo dance competitions next year! 
We spend a lot of time at the beach in the summer and as I have read that surfers with CF tend to do really well because of all the salt water mist they inhale. So we make special efforts to spend as much time in ocean water as possible.
 At age eleven she already has plans of becoming a marine biologist someday.  
 I think being very active like this helps her blend in with her friends and help keep her lungs clear! 
She blew a 104  FEV1 on her PFT's last visit! So something we are doing must be right! 

Can you describe what it is like being a parent to a CFer?

 Being a parent to a child with CF is a special job! It comes with a few extra worries and jobs. It has not been an easy one, but being a parent is not easy with or without CF! 
 I am not one who will say  "but I wouldn't change it if I could" because I would so love for a cure to be found and for my child to never have to do another breathing treatment or vest treatment ever.  Although I can say that having CF has made her a lot stronger mentally than many other children her age in a lot of ways. Also I think that because of her CF she has a lot more faith and believes in prayer and relies  on God more than other children her age! For these things I can say I am thankful! 




How did you approach the subject of cystic fibrosis to him/her?

Other than what she picked up at clinic visit when she was younger I didn't talk a lot to her about Cystic Fibrosis! She knew she had it it was a disease and she needed to be careful about germs, also that her tummy hurt if she didn't take her enzymes! I never really knew how much I should tell her at what age and still don't! When she was in the second grade and she had her first and only hospital stay they talked to her more about ""what"" it is. Over the years since we have talked more and more filling in the blanks with her. 

  
I talk with a lot of newly diagnosed parents to CFers. I want to know what you would tell a newly diagnosed parent to a CFer?


The best thing for a parent of a CFer to see and read are stories just like the ones I have read here of people who are going beyond what the doctors tell us and are getting married, having children, graduating from college, having careers, running for Miss New York or Hopefully Miss U.S.A., traveling. 


John’s Notes:

Truly another wonderful interview in this CF community interview series.  For many of us who are the CFer we do not know what it’s like being the parent to a CFer.  I know all of us CFers know that the job of a parent isn’t easy and then throw a genetic disease on top of it!! Yes, that is cause for panic and sleepless nights of way more than anyone wants. 

I really could see the difficult challenges that Lesa has to mentally battle between.  Of course she wants to see her Shelby be a “normal” girl.  It’s something I don’t think any parent would want to think about.  How can I prevent my child from getting a CF bacteria?  Well the answer to that question is we CANNOT prevent everything but we have to allow ourselves to sleep at night.  So if that means not doing a certain activity or going to a certain place or bring purell and sanitizing wipes with us than so be it.  All I know is that job of parent to a CFer is like no other. 

This is something that I feel every parent to a CFer should focus on and that is Lesa’s advice to all newly diagnosed parents. 

The best thing for a parent of a CFer to see and read are stories just like the ones I have read here of people who are going beyond what the doctors tell us and are getting married, having children, graduating from college, having careers, running for Miss New York or Hopefully Miss U.S.A., traveling. “

That quote is what I want and HOPE for all of us involved in the CF community.  We are in a new era of CF and I couldn’t be happier to be a part of this new era!

Thanks for doing this interview Lesa.


To read more inspiring stories from other CF community members click here.  



Tuesday, June 3, 2014

Alayna 19.5 Months

I guess this post is a little late for your 19 months of life Alayna.  It’s been a busy last 45 days or so since I last posted about you.  So here is the update of what is going on in your 19.5 months of life. 

For whatever reason we always find ourselves taking you to a doctor or emergency room way to often.  This time on mother’s day, yes mommy will never forget this one you took a dive on your face.  Well I should say you tripped over your Uncle Andrew at the ice cream stand after running around like a wild maniac.  It is very tough to keep you all bottled up when you are so full of energy.  You tripped and fell face first on the concrete.  The screaming and crying ensued for only a short time.  I think mommy and I both were panicked once we saw the blood coming from your nose and mouth. 




We hopped in the car and head to the ER to make sure all the bones in your face were still in tact.  Thankfully, the doctor said everything looked fine.  But we still wanted to make sure everything was fine with your nose.  We waited a day or so to take you to a plastic surgeon.  Yep, a plastic surgeon of all things.  I guess they send all kids to the pediatric plastic surgeon if there is any thought to a fracture of the nose.  So we had the plastic surgeon check your nose and everything looked fine to him.  Thank goodness!

But at the plastic surgeon we talked about our family medical history.  That included of course your miracle story of conception and birth.  For whatever reason we have this miracle story about your conception and I think we will be telling this story for years to come.  The doctor couldn’t even follow your story of miracleness! Hey looks like I made up a new word miracleness. He did say in deed you are a miracle Alayna.  In fact he was jokester and asked if we named you Mir as your first name and Acle as your middle name!!





In other news, you continue to seem like a big kid to us.  When we take you out in public, people cannot believe you are only a little over 19 months old.  I think we are all blown away by how tall you are especially coming from a father who is only 5ft 9 inches and a mother who is 4ft 11.5 inches!!

You have a personality that is like no other.  It seems as if you truly will be one outgoing person.  Wherever we go, you wave and shout out HI to anyone and everyone.  In fact, someone said the other day I thought I was special since she said HI to me.  Then you just kept saying HI to everyone. 

Not only do you love to be vocal and let your presence be known, you also continue to love to dance and sing.  We were at a restaurant the other day and mommy said shake your bootie.  There was no music but you decide to just start shaking.  The older man said just remember there will be one day that you will want her to NOT be shaking her bootie.  Uhm YES, if dad had any say in anything you will not date until you are 18.  But let’s be realistic I think you will be killing a lot of boys out there just by being you Alayna!


Maria, Kendal (Niece), John, and Alayna 


As for the singing, it’s actually pretty impressive.  I don’t know many toddlers who around the age of 19 months who can already sing so many songs without any help or music.  Right now, one of your favorite songs is the ABC’s.  Not only can you sing the entire alphabet, but you even sing “Now I know my ABC’s, next time won’t you sing with me!” We will clap and cheer you on at the end and you then start singing the ABC’s over and over again.  The song list now includes: ABC’s, Barney I Love You, Mr. Sun, Row Row Row Your Boat, Itsy Bitsy Spider, and a few others. 

You are doing much better with solids and liquid.  You still really do not care for any meat textures but you eat all the chicken, beef, and turkey in baby food.  We have discovered you really love Cheetos, pretzels, goldfish, ho hos, and chips.  Yes, that is a list of junk.  I think though one of your favorite things is to eat chip dip.  I mean you stick the Cheetos in the chip dip and lick off the dip.  In fact, you picked up the plate of chip dip and started licking it!! I guess you like the good stuff. 

Alayna, all I can think of is how proud you make mommy and I both.  You have brought so much joy into our life these last 19.5 months.  It’s not easy being a parent but it is beyond rewarding.  We care so much about you!! I cannot wait to see what you will be doing when I say Alayna is 19.5 years old instead of 19.5 months.  You can guarantee I will be there to see that day.  Thanks for always giving me another reason to take care of myself and continue putting in all the effort I do every day I get out of bed for this family. 

We LOVE YOU!


PHOTO TIME!!!!!!




















Tuesday, May 27, 2014

CF Community Interview - Andy Lipman (Fibro)

In this interview you will read from Andy on what it was like growing up with this disease 40 years ago. Yes, a lot has changed since the time Andy was diagnosed with CF.  Andy details what life is like now having a wonderful wife and now two amazing children.  

You will notice that Andy lives by a very positive attitude in his life especially after realizing his sister only lived about 2 week with CF.  I believe that half the battle is your attitude toward anything in life and Andy exemplifies a wonderful attitude.  

Andy has written 3 books now, has a big charity softball event in memory of his sister, and has carried the Olympic torch en route to the Atlanta games.  Through Andy's dedication,commitment, and hard work he has raised over $2,000,000 in support of making cystic fibrosis stand for CURE FOUND.  That is truly remarkable.  Read below to find out more about this amazing fibro. 




Andy with his son Ethan!




 NAME:  Andy Lipman

AGE: 40

SOCIAL MEDIA SITES:


Andy@andylipman.com



Please share your cystic fibrosis diagnosis (Include age, how you felt at the time of diagnosis, how was life before and after diagnosis)?

I was diagnosed at birth because my sister Wendy died from the disease. When I was around 8, I learned what CF really was and blamed everyone around me for all of my problems.


Once you realized you had cystic fibrosis did you change anything (did your goals change, views on life change, did you avoid certain things)?

I was very bitter and felt like everyone had it better than me. I thought all of my dreams were unreachable.


I know from reading your blog that your sister passed away because of cystic fibrosis. What did you learn from this?

My sister only lived 16 days and died 3 years before I was born. I didn't know the cause of her death until I asked my mom when I was 25. I learned that every day is a blessing and I should never say life isn't fair because people like Wendy had a much greater beef than me.


What has been the biggest challenge for you dealing with cystic fibrosis?

Having a positive attitude especially when my numbers frustrate me.


Please share with us any triumphs you have accomplished because of cystic fibrosis?

I have written 3 books, run with the Olympic Torch and started a charity tournament in memory of my sister that has raised nearly $2 million.




Andy's championship softball team. Andy is in the maroon sweatshirt. 




Since you have shared with me that you were able to have children what struggles did you face on this path?

IVF was expensive, physically painful and emotionally scarring. I was fortunate to have a wife who was able to deal with our struggles and help them to become successes. My children are my 2 greatest accomplishments and miracles.


Andy's wife and daughter.



How has becoming a father shaped your life? I think many people do not understand that being a father and having CF is very tough. Please share any thoughts you have on this topic. (How is treatment time before and after becoming a father? How did you let your children know about CF? If you had to give advice to any CFer on becoming a parent what would that be?)

Being a father has made me more proactive with regards to my CF. I'm not just staying healthy for me but for them too. Granted it's a challenge and time management is critical. You also have to be careful with germs when they come home from school. I explain to my kids that CF is something daddy has and he has to be proactive about. My daughter has a peanut allergy so I used that analogy. I also tell them to never be afraid to ask me anything.


Were there things you wished your parents did differently as you grew up with cystic fibrosis (Example: more freedom to be in charge of your treatment, speaking at doctor visits, life pre diagnosis/post diagnosis, not allowing you to do certain things because of CF)? 

My parents were very proactive. They also did anything they could for me. Yes, they were very overprotective and secretive but being a parent myself now, I totally understand.


You have seen a lot of things as I call you a CF veteran. I assume you have seen a lot of changes in the early days of CF and where we are at now. Can you describe what it was like in the early days of CF and where we are now and where you think CF is going?

When I was young, there was no hope. There was no kalydeco. The cf gene had not been discovered. There was no hypertonic saline. There was no vest. And worse, people with cf were not living into adulthood. As I tell people, if you're going to have CF, this is the time to have it. Hope is plentiful.


This question floats around a lot. If you could be born without cystic fibrosis would you? What has CF taught you?

Yes and no. Sure I wish I didn't have to deal with my health issues and concerns but cf has made me the man I am today and has helped me to form a legacy. I guess I'd choose being born with CF.



I talk with a lot of newly diagnosed parents to CFers. Many of these parents feel the world is crashing down on them when they hear the two letters CF. I want to know what you would tell a newly diagnosed parent to a CFer.

Don't put your kids in a bubble. Watch out for them but also have faith in them. A cure is near.


I have found that there are a good amount of CFers who are worried to tell their boyfriend/girlfriend they have cystic fibrosis. As a CFer who is married what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis in a future relationship?

Someone once told me that when you have something like CF that you will find someone very special who can handle it. I definitely did in my Andrea. I love her so much. Be open about it but wait till the time is right and be positive and confident. Just like anything with dating, you're selling yourself.

Is there anything else you would like to share with us when it comes to your battles with CF?

I've found that the mental struggles are just as difficult as the physical ones. A positive attitude, being proactive and being diligent with your treatments and workouts are key.

Be positive. Show the world that cf isn't a death sentence. Raise awareness until we can find a cure. Exercise harder than anyone you know. Be diligent when it comes to your treatments. Do your own research. Don't depend on your doctors alone. Build your own legacy.




Andy with his personal trainer!! 


John's Notes:

Andy is full of life and wonderful advice to all of us.   As I said above half the battle when it comes to this disease is our attitude.  You can actually control your attitude unlike most things in our health.  Andy is in charge of his winning attitude and it's also contagious.  I remember finding Andy in the blogger community and I was hooked on his blog site because I could tell that he wrote from his heart.  What really got me hooked was he was living and defying the odds against CF everyday.  I wanted to be like Andy.  Yes, I wanted to be married, have children, and even a career.  I guess it looks like I am following in that path Andy!  Thanks for helping pave the wave for many of us in the CF community. 

I really like how Andy said this quote about finding someone right for you to marry.  "Someone once told me that when you have something like CF that you will find someone very special who can handle it. I definitely did in my Andrea. I love her so much. Be open about it but wait till the time is right and be positive and confident. Just like anything with dating, you're selling yourself."  I think many of us who have this disease and are in a committed relationship would agree with this quote.  I have found my love in Maria and I know many of my fellow CFers have been blessed with someone amazing in their life.  For those of you who are still awaiting that Mr./Miss. Right they are out there and you will find that person one day.  

I think this also sums up how I feel and how I hope many of you feel about your CF. "I've found that the mental struggles are just as difficult as the physical ones. A positive attitude, being proactive and being diligent with your treatments and workouts are key. Be positive. Show the world that cf isn't a death sentence. Raise awareness until we can find a cure. Exercise harder than anyone you know. Be diligent when it comes to your treatments. Do your own research. Don't depend on your doctors alone. Build your own legacy."  

I hope we are all building our legacy every day we get out of bed.  We cannot go backwards in life only forwards.  Enjoy every day you get out of bed.  Take care of yourself not only for you but for those who love you and want to see you healthy.  Defy the odds and statistics of CF as you are the author of your own story!!! 

Thanks for sharing your story with us Andy.  You truly are an inspiration person and influence on many of us in the CF community.  Keep up the great work on raising awareness and funding CF until one day CF stands for CURE FOUND!!!

For more inspirational interviews click here.  




Wednesday, May 21, 2014

CF Community Interview - Julia Rae (Cyster)

In this interview you will read what it's like for Julia to keep pushing through CF to reach her goals.  I like to say in my life that CF is a long for the ride.  I think that Julia is taking CF for quit a ride.  Once you read her interview you will see the true determination she has for reaching her dreams and goals.

This interview should give a lot of HOPE for the younger CFers out there as well as parents to CFers.  Julia is defying the odds every day chasing her dreams and passions.  If you are a parent to a CFer or a younger CFer yourself, always shoot for the stars because honestly the sky is the limit.  No one can ever tell you that you cannot accomplish your dreams.  If you dream of singing, acting, modeling, and even competing for Miss America go for it.  Julia is on a mission and she is not letting CF stand her in her way.

GOOD LUCK Julia as you compete May 24, 2014 to be crowned Miss New York and move on to Miss. America!! You have already made all of us proud!!






Name: Julia Rae

Age: 21

Social Media Sites:




Please share your cystic fibrosis diagnosis (Include age, how you felt at the time of diagnosis, how was life before and after diagnosis)?

I was diagnosed with cystic fibrosis before I was born. I have never known a life without this chronic lung disease which has its advantages — doing nebulizers and pulmonary treatments are as second nature to me as brushing my teeth! 

As you mentioned your brother also battles cystic fibrosis. What have you learned from having a sibling battle the same disease?

Sharing the battle with my sibling makes CF feel less daunting.  My older brother, Will, was diagnosed before me, so growing up with cystic fibrosis felt normal because I had an awesome built-in breathing treatment buddy!



We all know that cross contamination is a big deal when it comes to CF, well at least according to the cystic fibrosis foundation.  What are your thoughts on the new CFF policy?   Is there anything you do to help avoid passing bacteria back and forth with your brother?

As heartbreaking as the new CFF policy is to abide by, I think it is so important in the interest of the entire CF community to follow these guidelines.  We have to protect each other.  My brother and I take precautions when necessary which is difficult because we are incredibly close.

What has been the biggest challenge for you dealing with cystic fibrosis?


I think the biggest challenge has been experiencing setbacks in the midst of chasing my dreams.  I was hospitalized twice in 2010, at the same time I had a unique opportunity to record music it was a dream come true for me and the timing couldnt have been worse.  I remember feeling crushed and so disappointed and I had to find a way to accept that this is a part of my life and that there would be better days ahead.






Please share with us any triumphs you have accomplished in the face of cystic fibrosis?

Though CF does interrupt my life, and though it may require a detour now and then, I have made a conscious decision to not let it change my dreams.  Performing, whether singing, acting or modeling, has been my passion for as long as I can remember.  Though I have had to make accommodations for living with a chronic illness, I have performed in front of thousands of people in baseball stadiums and Las Vegas arenas.  I became Miss Pennsylvania’s Outstanding Teen 2008 and was 1st Runner-Up to Miss America’s Outstanding 2009. I was crowned Miss Metropolitan in February and I will compete for Miss New York on May 24th in hopes of walking across the Miss America stage.







Please share with us your non profit you created.  What is the mission & vision and why did you decide to create it?

I struggled with speaking publicly about cystic fibrosis until I was 16 years old.  At that age, I wanted to find a way to combine my love of performing and my desire to help others fighting CF so I decided to start singing at the top of my lungs for a cure.  My mission with Singing at the Top of My Lungs is to raise awareness and funds for research as well as funds to support important, underfunded hospital programs like Child Life and Music Therapy.






Since we know you are a singer, model, and actress how difficult has it been to keep up with all your passions while battling CF?

CF has reared its ugly little head several times that directly conflicted with performance opportunities.  The emotional burden of those instances has been far heavier than the physical.  This past November would have been my 6th consecutive year performing in the ABC Thanksgiving Day Parade in Philadelphia but my lungs had other plans for me on that holiday. You learn to pick yourself up and dust yourself off at an early age when you face a chronic illness.  Of course my ability to do so is thanks to the support and love from my family and my Child Life specialists.




Were there things you wished your parents did differently as you grew up with cystic fibrosis  (Example: more freedom to be in charge of your treatment, speaking at doctor visits,  life pre diagnosis/post diagnosis, not allowing you to do certain things because of CF)?

My parents could and probably should write a handbook on parenting children with chronic illness. They are my heroes.  By far my favorite thing that my parents did was enforce the “no TV or video game unless someone is doing therapy rule.”  :)  This rule applied even to James, my oldest brother who does not have CF.  He was always begging Will and me to get our treatments done so we could play Mario Kart together. It was an awesome incentive all around and limited our tube time! My parents also made sure Will and I both always felt in control of our cystic fibrosis and our care. My mother is a rockstar in her own right in the healthcare world - since our diagnoses she has devoted her life’s work to teaching the value of patient and family centered care.



Can you describe what it was like in the early days of CF and where we are now and where you think CF is going?

I remember the days before the Vest machine.  My Mom used to do manual chest PT to cassette tapes of our favorite childhood songs!! I have a portable nebulizer that is quite literally my lifesaver! I am able to keep up with my busy schedule thanks to advancements like this.  With the success of Kalydeco, it always excites me to think that the end is fast approaching for the CF regime that these generations have known!





This question floats around a lot.  If you could be born without cystic fibrosis would you? What has CF taught you?

It’s a tough question, too. Of course, given the chance I would remove the heartbreak and the pain that CF has caused me and my family.  But, living with CF has given me a perspective on life that I would never want to give up.  CF has taught me how to be resilient and to appreciate that everyone is facing their own battle.


I have found that there are a good amount of CFers who are worried to tell their boyfriend/girlfriend they have cystic fibrosis.  As a  CFer what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis?

I am still figuring this one out for myself so I feel like I am not the best equipped to dole out advice :)  - but I am a big believer that honesty is the best – the challenge is the timing of when and how to share this personal information.  My only advice would be to be true to your own instincts – that I have found has been my best guide.




I talk with a lot of newly diagnosed parents to CFers. Many of these parents feel the world is crashing down on them when they hear the two letters CF.  I want to know what you would tell a newly diagnosed parent to a CFer.

Though the path seems overwhelming right now, there is so much hope for cystic fibrosis patients today. Not only is the CF Foundation adding tomorrows for all of us, they are adding quality to our todays. And thanks to the world of social media you now have access to a strong cystic fibrosis community…you and your child are not alone in this fight.


What advice would you give anyone who is battling cystic fibrosis today?

Adhering to the daily treatments of cystic fibrosis truly pays off in the short and long term! Go after you dreams full force and don’t let the definition of cystic fibrosis define your life.


Is there anything else you would like to share with us (hobbies, other CF topics I did not cover)?

Would love to hear from you…reach out to me on my social media:
www.facebook.com/singingatthetopofmylungs





John's Notes:


Julia just has one wonderful perspective on LIFE!! The hardest setback of not having the opportunity to record your music in 2010 because of CF has taught you about life.  Sometimes it's choices like going into the hospital and putting your life on hold that are the best decisions.  Who knows where you might be Julia if you didn't make the hard decisions of putting your health before your dreams.  I know you are thankful you put your health first so you could follow your dreams today competing for Miss. New York! 

There needs to be more people like you Julia who are willing to speak out about cystic fibrosis whether that is through their own talents such as singing or even just talking with your neighbors. I have said many a times, the more people who know about CF the more likely one day we will see a cure for this disease.   If we all could find a way to help others who are going through the same struggles the CF community would be just that much stronger.  

As Julia mentioned, when a parent empowers their child to be compliant with their CF care it pays dividends for the child.  It gives you a sense of fulfillment and allows you to feel in control of your CF care.  As I tell many parents to CFers they are the ones who are setting the foundation for their children for years to come! It seems like Julia hit the parent lottery and sibling lottery!! 

Julia is just full of wonderful advice and perspectives.  I really like what you had to say about going after your dreams! "Go after your dreams full force and don't let the definition of cystic fibrosis define your life!"  Well looks like you are a great example of that quote Julia! 

I wish you all the best this coming weekend as you battle to be crowned Miss. New York!! 

For more interviews with members of the CF community click here.