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

SOCIAL MEDIA SITE:


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.  



I LOVE YOU!!  









Thursday, August 7, 2014

Happy 30th Birthday Maria!!!

Today, it’s the end of a decade for you Maria! HAPPY 30th BIRTHDAY to my better half!

I have been lucky enough to be with you for well over a decade now.  Writing that sounds like it has been FOREVER but all I can say is the time has gone faster than I could imagine.  I am sure you feel the same as you decided to keep me in your life ;)

In the last decade, we have done basically everything together.  We graduated college together.  After college we were married.  We bought our first house.  We have went on some fun vacations and made some awesome memories.  Our journey to creating our family is one I don’t think either of us would have ever dreamed of.  Alayna made us a family and I know we couldn’t be happier with her in our life.   We sold our first house and moved to our dream home. Yep, in all honesty we could live in this house, forever!   

We have had some bumps in the road especially when it came time for us to have a family. But there is a saying that goes something like this “You were given this life because you were strong enough to handle it!” I have said it many times but you have shown me what it means to be that much more of a fighter. Though what seemed to be all monumental odds to climb never once did you say I am done fighting for what we both wanted and that was a family.  I don’t know what anyone else would have done in your/our situation but I can tell you you’re one hell of a determined fighter.  Your determination and never accepting a defeat is something I admire every day!

I can tell you, my life has been made easier because of you.  You are one of the most selfless individuals I know always putting others before your own needs.  You have continually shown how much you truly care for our daughter and me.  I cannot say enough how you motivate me to put my best foot forward every single day!  I look forward to the many more decades we will have celebrating birthdays, making more memories, and most of all being right next to you through it all!

Here is to more decades together!!

Happy birthday to my best friend, my wife, and my soul mate!!


Love you! 



















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.