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!

Thursday, October 16, 2014

CF Clinic Visit - Ebola, B.Cepacia sams club wipes, and my health

Here is my update on my recent visit to the CF clinic.  If you have ever talked with me on social media or in person you know I have a lot to say and this usually means I talk a lot at CF clinic.  I asked tons of questions about what’s going on today with all this Ebola talk, the contaminated Sam’s Club wipes with B.Cepaciaenteroviruskalydeco and vertex, and of course my health.  
Dr.  Ebola is a very serious thing.  The media and news is really downplaying how serious this is and can be.  He believes that this type of Ebola virus has mutated as it has infected thousands in Africa.  The more people the virus infects the more chances that it has mutated along the duration of this outbreak.  When a virus mutates it develops different strains.  If they develop a vaccination it may be tough to include all the strains.  He said the virus is NOT deadly but you can die from it.  Oxymoron right!  But I guess what he is referring to is that you can survive if you get Ebola hence the American who has survived.  
Me – So what happens if a CF patient were to contract Ebola?  Dr said we should all pray.  Basically, Ebola would be pretty awful for any of us with compromised immune systems.  I asked if we should be really scared or anything we should do.  He did suggest to stockpile food and water. Uhm what?   He said if there was a pandemic it would be good to have on hand.  Should we live in a bubble?  He really didn’t say much but said basically hibernation is always an option.  

Sam’s club wipes & B. Cepacia –
Dr. – B. Cepacia has various strains and NOT all will impact a CF individual meaning cause them to get sick and cause rapid decline.  He said he sent an email yesterday to either CDC or some medical professionals close to the recall.  He wants to know what strain of B. Cepacia was found so he can advise patients if there is cause for concern.  He told me not to wipe my mouth with these wipes.  Thankfully, I have never wiped my mouth with a baby wipe but we have purchased these wipes from Sam’s Club.
Me- How long would it take for someone to have B. Cepaciaonce exposed to it?  He said it may not show up in a culture until after 18 months of first initial exposure.  UHM what the heck!!! Should I be concerned? He said well there really isn’t anything that can be done at this point. Bacteria is every where.  B.Cepacia can be found in the soil, countertops, sinks, etc.   Should someone with CF get a bronchoscopy if they have used these wipes? He said that would NOT advise doing this.  You may have to do a bronchoscopy every week if you really wanted to find B. cepacia after first initial exposure.  So basically don’t lose any sleep over this event at this time.  
Here is a link about B. Cepacia in CF patients.
Dr. – Entervirus has yet to be found in any adults that he knows of.  He said he has never seen this type of Enterovirus in his career.  
Me- I didn’t really ask any questions on this topic.  I am not sure if my CF clinic has seen a CFer with enterovirus this year.

Kalydeco & Vertex –
Dr. – The future is very promising for many individuals who have at least one DF508 gene.  Vertex believes they will be able to treat at least everyone who has one copy of DF508 or a residual mutation or gating mutation.  He believes that R117H will be added to the kalydeco label very soon.  
Me – I told dr about the potential of getting on the kalydeco andvx 661 trial.  He said that Vertex has been so successful with getting FDA approval on things because they work very closely with FDA to see what they want as outcome measurements in their studies.  

My Health –
It was my first appointment where my clinic moved to electronic medical records and I have to tell you I truly hated the patient doctor interaction.  The appointment lasted forever it seemed like.  I really feel that patients will be the ones who are ultimately hurt the most by this.  I honestly could have filled out the questions at home and then came to the visit.  It would have saved about 30 minutes.  
My weight is always good and my BMI is in the normal range. Woo hoo.  I am so thankful I do not have to worry about the struggles of gaining weight.  Many of my CF friends battle this every single day.  
My lungs sounded good as usual.  I don’t ever get those rattles or crackles at least not at clinic.  I will sometimes after airway treatment but its just the junk moving around in my lungs.  
My PFTs, well they were not the best but also not the worst.  I am at my baseline but lower end of baseline.  I blew a FEV1 68 last visit I was at FEV1 73.  My baseline is anywhere from high 60s to mid 70s.  Normal non CF lungs are 80-120. My doctor really dislikes this test just like me.  There is way to much performance skills and anxiety involved in this test.  He usually concentrates on FVC number which mine was 91 yesterday.  He claims FVC is the measurement of how you actually feel.  Anything above 80 is normal.  I guess that means I should feel good.  I do actually feel pretty good but wish my FEV1 was a little higher.  When it comes to PFTs I always struggle with anxiety.  But from what my dr tells me they are really looking at using a breath test instead of a PFT to measure lung performance.  This breath test is more NON performance based.  I have no idea when this will ever come to clinic but I believe Vertex is using breath test for lung performance in some clinical studies.  
So what am I going to do to get my PFTs to my upper end of baseline? I experienced my first ever lung bleed about a month ago. It truly was a scary event for me!! I called my dr and we discussed what I have been doing before lung bleed.  If anyone has ever read my blog or followed me on Facebook you will recall I am big on using 4 vials of HTS a day at 7%.  He suggested I cut back on the usage of my HTS.  I dialed it back down to only 2 vials a day but I could tell the difference in my breathing and my lung junk.  I just never felt fully clear in the last month doing only 2 vials of HTS a day.  
In the past week I have increased back to 4 vials of HTS a day.  I know it’s going to take time to get back to where I was before blowing a FEV1 of 74 and feeling clear through the day.  But I can tell you I already feel the difference in my lungs.  I feel so much more open and less junky all day long.  I am just hoping that 4 vials of HTS is not the culprit in my lung bleed.  I have decided I am going to give my lungs a break every few days and go to 2 vials to see if that helps at all.  
I will also be doing more affloing in the car.  Affloing meaning using my Afflovest more! I cut back on that as well during my lung bleed to give my lungs a rest.  I have been back to using myafflovest 4 times a day. I LOVE the portability of this device.  After a week of doing my afflo 4 times a day I can feel the difference in my lungs.  I just love this device over my hil rom.  
Overall it was a pretty good visit with my CF clinic.  will be going back to clinic right before Christmas so I hope for an early Christmas gift of increased PFTs.

Monday, August 18, 2014

CF Community Interview - Sabrina Walker (Cyster)

In this interview you will read from Sabrina on what it was battling CANCER and having cystic fibrosis! Yes, you read that right Sabrina is truly a WARRIOR. Sabrina details what life was like growing up having cystic fibrosis and also winning the war against cancer.  

You will notice that Sabrina lives by a very positive attitude in his life! I believe that half the battle is your attitude toward anything in life and Sabrina exemplifies a wonderful attitude in all things she encounters.  

NAME: Sabrina Walker

AGE: 27


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

I am one quarter Tlingit Indian and I go to the Indian Health Services Hospital in Alaska. The Cystic Fibrosis gene is not carried in the Native American/Alaska Native population, since I am only ¼ Tlingit I have enough Caucasian in me to carry the gene. I was diagnosed with Cystic Fibrosis when I was 4 years old, but it took months and months of testing and doctors to diagnose me. When I started Kindergarten, my parents soon realized how small I was compared to my classmates. It took so long to diagnose me because the Indian Health Services in Alaska had never had a patient with Cystic Fibrosis and they had never thought about testing me for this disease. I was then transferred to a doctor who suggested that I be tested for Cystic Fibrosis and my CF story begins.

I don’t remember life too much before being diagnosed, but I remember small snapshots of life after being diagnosed. I remember going to doctors appointments, I remember my first hospitalization and running from the doctor when he tried to give me an IV, I remember waking up and crying because my hand hurt and the nurse not doing anything about it (The IV infiltrated and I now have a scar on my hand from the medicine burning my hand), I remember my parents trying to hide my enzymes in apple sauce and I remember going to the nurse once a day to do nebulizer treatments and postural drainage.

I never realized I was different from any children until I got a little older.

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 so young when I was diagnosed that not much changed for me. I still dreamed of being a princess and a veterinarian. I never thought that I was limited in what I could do and achieve because of CF. I still went to school and played outside like any other person my age. I did x-country running and track in Middle and High School as well as hockey cheerleading. My parents were excellent at helping/guided me with being compliant with my medicines and treatments. I had a routine and new nothing else.

 My parents always told me to never give up and pursue whatever I want in life. I still believe them!

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

The biggest challenge that I have dealt with in regards to Cystic Fibrosis is lung infections. It is so hard to go to work/school, take care of myself and be compliant with medicines and treatments, exercise and incorporate hobbies and friends. When I am sick I am physically exhausted and it’s hard for me to be motivated. I don’t enjoy missing work or school for Cystic Fibrosis, but after hospitalizations I leave feeling refreshed. I think it is hard for others to empathize with me when I am feeling sick because I look like a healthy 27 year old. I don’t enjoy that I am battling this disease and that my future is uncertain because of it.

I know you have had other health complications that are not just cystic fibrosis. What other battles have you battled?

When I was 18 I started to feel back pains in my lower back. I went to my Doctor and she felt that I had pulled a muscle from running. The pain never went away and eventually got worse, I started to get shooting pains down my legs and my right foot was losing feeling. After graduating from High School, I went back to the Doctor and was desperate for help. They ended up finding a tumor on my spine that was cancerous. I was diagnosed with non-hodgkins lymphoma. I did 4 months of CHOP-R chemotherapy and a month of radiation. Each chemo session was 3 days long every 3 weeks. I ended up with Pneumonia after my first chemo session because my body was so weak and I had no immune system. I was also allergic to one of the chemotherapy drugs so instead of it being a routine two hour intravenous session it had to administered very slowly over the course of 2 days with lots of Benadryl.  I have been in remission for 8 years!!

After defeating cancer, did your views on life change? Has it made it easier to focus on battling cystic fibrosis from overcoming cancer?

Yes, my views on life have definitely changed. I feel that I am beyond blessed and thankful to be alive. I learned to not dwell on the negative or let small downfalls consume me. This life is beautiful and I truly embrace each and every moment that I get to enjoy this beautiful planet.

After beating cancer I felt that I could fight any battle. I look back at when I was 18 years old and I think that I am one tough cookie because I was battling two diseases at the same time that could have both potentially taken my life away from me. I do go in for yearly scans and blood work to make sure that my body is free of cancer, but now my focus is to do all that I can for myself to outlive CF. I believe that exercise has helped to keep me alive. There is no better airway clearance for myself other than going for a run. I am so hopeful for a CF cure in my lifetime and I want to do all that I can to help make this dream a reality!!

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

I have run 7 half marathons, I have done Lost Lake (a 16 mile mountain run) twice, I have raised $22,000 for Cystic Fibrosis by running and fundraising.

I plan on completing a marathon and lost lake this year!

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)?

No, my parents taught me to be compliant and have a routine, they let me be a child and go to school and play. They took me to doctors appointments and taught me to have a voice when it comes to my health. They taught me to be pro-active and play sports. I thought they did pretty well.

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 diagnosed with Cystic Fibrosis I was told that I wouldn’t live past the age of 8. The median life expectancy has drastically increased. When I was young we did postural drainage/chest percussion and now I have a vest that does the work for me. There are new antibiotics and amazing miracle drugs like Kalydeco. I am not on Kalydeco but I see that it has positively impacted so many people with CF. Enzymes and vitamins have remained the same.

I do remember being hospitalized when I was younger and I would play with the other CF kids in the hospital. Now it is very different and we know that our lung bacteria and infections can be passed back and forth.

I know a cure is in our future!!!

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

That is a hard question! There are many positive aspects that CF has taught me to deal with in this life. At, the same time it has caused a lot of pain and hurt. At this point in my life, I see myself living until my 80’s and raising a family. These possibilities may not be in store for me but I plan on fighting for that dream. With or without CF I am pursuing happiness! I believe that CF has created a Courageous Fighter (pun intended)J.

I think CF has humbled me. I will never take life, health, breathing or happiness for granted. I grew up with accountability, I needed to take care of myself in order to live. Life and Death was presented to me at 4 years old and from that point forward I learned to thrive. I want to be a warrior in this life and I do not want to give up.

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?

CF is hard for parents to cope with, they are learning about the challenges that their child will face and a new world of constant fear has been placed in their lives.

I would tell them that compliance and routine are important. These medicines and treatments are meant to help our bodies. I believe in the importance of exercise so I think some type of exercise should be implemented in so that their child’s lungs are worked everyday!

I would tell them that hope is in the future. Our goal is to fight CF and we can do this by being proactive with their child’s health needs. This is not a death sentence, and negative outlooks like that can’t be tolerated. Raise your child with optimism and dreams.

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? 

When I was in middle school I was scared to tell people about CF. I was hospitalized and no one knew what was going on other than I was missing a lot of school. I learned that being open about CF with significant others and even friends has created a lot of support and wonderful bonding experiences. Unfortunately, it can be a cruel world and I had peers who said I was seeking attention and when I was diagnosed with cancer I had people who had said that I made it up. Those people make us tough. I read this quote recently,

“In the end, some of your greatest pains become your greatest strengths.” – Unknown.  

If someone does not accept this aspect in your life, you’re far better without them. Good riddance J


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

My advice would be to appreciate and find the beauty in each moment of your life, do not take this life for granted. You are in charge of your own life, so dream big! CF & Cancer are bumps in the road, they create warriors, fighters, strength and compassion within the person that is experiencing the battle of CF or Cancer. Never give up and hold optimism in your heart. Take care of your spirit by doing things you enjoy. Exercise!

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

To all the beautiful people battling CF!

“The most beautiful people we have known are those that have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” – Elizabeth Kubler Ros

John’s NOTES:

I don’t really know how to sum up this anymore by saying that Sabrina is truly a dedicated, strong, and inspirational to EVERYONE!!  I really love how Sabrina says you are in charge of your own life and dream big.  I don’t think people understand that.  There are way too many people who feel they were dealt a bad hand in the game of life that feel sorry for themselves.  It’s up to the individual to take charge and bulldoze through the tough times. 

It’s really great to see Sabrina so dedicated to her health and putting her commitment to running into her health plan.  We all can find a way to be more active in our life.  Sabrina says she needs to run to stay healthy and in the best shape possible for one day she can embrace that day when CF stands for cure found. 

I think the quote that Sabrina shares with us at the end tells it all.  “The most beautiful people we have known are those that have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” – Elizabeth Kubler Ros

I am just glad to call Sabrina my friend, my fellow CF WARRIOR, and one inspirational person!! Keep on running and inspiring EVERYONE!

Monday, August 11, 2014

Seven Year Wedding Anniversary

The lucky 7!! Where did these past 7 years of wedding bliss go? It’s crazy to think that 7 years have already come and gone but not without some fantastic memories that we have made.  I will always remember that day August 11, 2007.  It was a beautiful HOT day unlike what we are having today!

I felt like it was another ordinary day.  Some may ask why would you feel like it’s just another day? Well I guess when you are about to marry the woman you call your best friend, your soul mate, and life partner why would you have any nerves on that day? Honestly, I did have some nerves but it had nothing to do with making the best decision of my life in marrying Maria.  I just didn’t want to mess up any part of the ceremony.

I can say I actually did mess up during the ceremony. I don’t think anyone will ever recall this nor was it ever made a big deal during the ceremony as the preacher was a class act.  So my mess up was when Maria’s father walked her down the aisle and I was supposed to wait until the preacher said something about Maria’s father presenting her etc. I will be first to admit I forgot all about this as I was the groom who was crying his eyes out! I couldn’t help it! There is just something about marrying the woman of your dreams. I reached out shook my now father in law’s hand and gave him a hug.  On went the ceremony and no one said a single peep about it.

The only person who did say a word was Maria when we were at the wedding reception.  She told me you know you forgot to let my dad present me at the alter? I said oopps! She told me it’s OK, everything was PERFECT!! That is one reason why I LOVE my wife.  She just goes with the flow and is just a low key lady!

Even after seven years of marriage, I can say that we are definitely still enjoying being the couple we have been all the way back when we started dating.  Maria and I have been high school sweethearts dating way back in Sophomore year.  That now makes for almost 14 years of being together! That is almost half of our life we have been together.  I know it sounds like a really long time to be with someone that long but in all honesty every day, every week, every month, and every year go by so unbelievably fast.  

I can say that I married my best friend and my soul mate!  I blogged this same quote a year ago and still holds true……“It doesn’t matter where you go in life, what you do…….it’s who you have beside you.”  I truly could not imagine a day without you Maria. You have always been in my corner and have given me so much strength in life that no one else could have.  You have provided so much inspiration and a reason to never give up on our dreams.  I could not ask for anything more in life than to have you by my side.   I am proud to call you my best friend, my soul mate, my wife, and the mother to our miracle daughter.  

So here is to another year creating more memories.