CF Community Interview - Maria (Spouse)

In the cystic fibrosis community we always read the number 30,000 people are battling this disease (United States CF population) or 70,000 worldwide, but there are so many others who are also battling this disease. The people who often get overlooked when it comes to CF are the spouses (boyfriend/girlfriend or fiance), the parents to the CFer, the brothers/sisters to the CFer, the doctors, the nurses, and the researchers.  In all reality, this disease impacts directly and indirectly way more than the 70,000 people who are diagnosed with cystic fibrosis.  That number is well into the hundreds of thousands just by my rough guess.

Today, our first interview focuses on one of those overlooked or forgotten people in the CF community. It takes a special person to be married to a CFer and many of us know that.  But what I like to call a woman married to CFer is an Army Wife! They are there for their CF warrior every step of the way, through the tough times and the greatest times.  The CF Army Wife knows their spouse is fighting a living battle every day they get out of bed and shows more support than truly anyone else on this planet.

What better way to kick off this interview series than a beautiful lady! She not only is beautiful on the outside but truly has one of the biggest caring hearts I have ever met.  She is the most gorgeous woman I have ever laid eyes on, she is the mother to our miracle daughter Alayna, she keeps me SANE, she puts up with my RIDICULOUSNESS,  she would do anything for our family, I could keep going but I think I will cut it here.

Please welcome my beyond beautiful wife Maria as she explains what it's like to be a spouse to ME, a CFer!


Name :  Maria

Age:   29

What do you remember from the day you found out your spouse had cystic fibrosis?

When I found out that you had Cf, I was 16 years old. I was sitting on the phone with you in my parents kitchen and all of sudden he said out of the middle of no where that you had CF. I had no idea what it was. You explained it to me without a worry in your voice. My heart sunk when I realized that you may not be here one day. I got off the phone and cried and from that point on, all i wanted to do was give you the best life you could ever dream of.

How did you view life after you found out your spouse had cystic fibrosis? 

My life as a 16 year old no longer existed but i grew into a mature adult. I didn’t want to do the typical teenage activities. All I wanted to do from that day forward was to be with the one I love every second of the day. In a way, finding you had cf was a blessing because I could have been just like others we know who partied their life away and still do that today without any accomplishments. Cystic Fibrosis made me grow into the woman I am today. Together we graduated high school, graduated college, got married, and had a beautiful daughter. I live each day as if there was no tomorrow. My main goal in life is to keep you healthy and give you every opportunity to live every dream .

In your words what does it mean to be a spouse to a CFer? 

Being a spouse to a person with cf is very challenging because i want to help you live a long healthy life. So for me ,it means to protect you from things that can hinder your health but also give you the love and support to help you fight Cf. Being a spouse with cf means to be the love and encouragement to make you want to fight this disease. If I give you a life worth living then I know you will fight to want to live it with your family.

What is your biggest struggle when it comes to accepting your spouse has cystic fibrosis? 

This biggest struggle is that one day you might not be here with Alayna and I. Secondly, one of the hardest things is that I am not good enough for you. I am afraid to make mistakes where I didn’t protect you enough and you got sick. I love you and I never want to lose you. You are one of my favorite people in the world besides my daughter. There would be no life for me with out you. So the hardest part is knowing that you might not be here.

What has being married to someone with cystic fibrosis taught you about your own life? 

 To live each day as if there is no tomorrow.

Explain what it’s like to be married to ME (include anything you want it’s your opportunity to spill whatever you want about me : ) ? 

 It is wonderful being married to you! Life never gets boring for one thing. I don’t think there has been a day where we have ever got bored of each other. I love you from the time you are singing in the morning to the end of the day when your tiredness catches up with you and your crankiness comes out . You are the best father in the world. You make us all laugh with your crazy dance moves. I can tell you one thing, i know my daughter is going to be just like you which is trouble. She thinks she is beautiful. It is funny to see you both at the mirror and tell each other that you are beauty queens. Being married to you is like being married to your best friend. It never gets old but gets better as time goes on. I can’t wait to spend the rest of my life with you!

As we all know you went through some very tough times through our fertility journey. What did this journey teach you about your life, your life as a couple, and your commitment to your dreams?

I have learned that our love is the strongest entity in this world. Without the love from john, i don’t think i could of got through invitro or my birth. Knowing that my husbands suffers every day with cf gave the motivation to be just as strong. This journey taught me that our love defeats any challagenes that are thrown at us. Invitro has taught me to be selfish and to never give up because dreams do come true as long as you don’t give up no matter what you have to go through.

Since we have our little miracle in Alayna, how do you feel we should approach telling Alayna about my battle with cystic fibrosis? 

This will be very hard, but i know we will be honest and answer any questions she has. At this point in time i don’t think about telling Alayna until she can comprehend what cf is and how it affects her daddy. Right now i want her to enjoy her daddy without any worries.

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 spouse to a CFer what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis in a future relationship? 

 No one should ever hide who they are. tell them when your comfortable and if they can’t accept it then they don’t deserve you anyways..

If there is anything else you would like to share feel free to……. 

I love you John for all that you are. I wouldn't have you any other way. Cf made you the person you are today. God knew that you would embrace life and make the best of it. You are kind, sincere, and most of all loving. Though you have this disease, you never act like there is no tomorrow. You are the strongest person i know. You always hold your head up high and never give up. You are my true inspiration. Love you

John's Comments: 

The answers to these questions truly were not influenced by me! I mean I didn't tell Maria what to write or not to write. I am also surprised she was way way to kind on me. Trust me, I am not a perfect person.  She could have spilled some dirt about me!!!

Just reading the answers to the questions brought back some memories for me as I recall telling Maria that day I had cystic fibrosis.  At that time, I was maybe not even 16 years old yet and only was officially diagnosed at 12 years old.  CF was pretty new to me even back then.  I think, I played approaching CF with Maria safely over the phone.  Yes, for all you younger folks out there I actually talked on the phone not texting.  We didn't even have texting back then.  I just put it out there hey I am going to go and do my vest or something to that nature.  Basically, like it was just a part of who I am! I just knew from that day forward that Maria was going to be able to handle my CF.  Her reaction to me telling her about cystic fibrosis was just oh ok. I know she asked what it was and I gave her the scoop.  There was no concern in her voice at least that I could hear! I just knew that this woman even though we were in high school was going to be there by my side every step of the way.  It looks like that has been the case and I wouldn't change a thing about it.  

When Maria says that her biggest fear is I will not be here for our daughter Alayna or her just really emphasizes the CF Army Wife title.  For all those who serve this country proud there is always that spouse or Army Wife waiting for their man to come home.  I know Maria does think about this but I also know it doesn't consume her life.  I can tell that by reading her statement about living each day as if there were no tomorrows.  I will tell you that every night when I go to bed I do not have one single regret about OUR life! 

I have learned so much about life having Maria by my side through everything.  Here is just a short list of the things we have accomplished in spite of CF. I like to call it CF is just a long for the ride when it comes to our life.  We have graduated high school together, graduated college together, I married my high school sweetheart, we bought a house together, we went through a roller coaster ride battling infertility, we successfully created a family with the miracle birth of our daughter Alayna.  

I just cannot put it all into words what it means to have Maria in my life.  I am truly one of the luckiest individuals ever to walk on this planet.   She has shown me that if you believe in something so much that your dreams will come true.  I witnessed this first hand when it came to our infertility battles.  This battle brought us even closer in our relationship and marriage. 

If it was not for Maria, I truly do not think I would be the man I am today. I know CF has taught us a lot about life but if I didn't have this strong presence in life in Maria I know that I would not be the person I am today.  THANK YOU from the bottom of my heart for loving me each and every day as the person I am!



Thank you for reading the first interview in this blogger interview series. I hope you found it as useful and enjoyable as I did.  This interview series will showcase many of the individuals who are battling CF and who are a part of the community.  I would like for anyone who is a spouse (boyfriend/girlfriend) to a CFer, parent to a CFer, or a CFer themselves to please reach out to me and let me send you interview questions.  Anyone who participates in this will receive their very own blog post just like Maria did here.  We will bring so much more awareness sharing our stories!  Please send me an email jtodog23(use the @ sign)yahoo.com  Here is the link to the blogger interview series post.

Alayna 17 Month Post

Another month has gone and past. Today, you are 17 months old! It so happens to be St. Patty’s day as well. Happy St. Patty’s!  You have to always embrace your Irish heritage Alayna. I guess that is where you get your fair skin from.

Before I get into talking about all the exciting new things you have been doing and that lovely gastroenterology appointment, barium swallow x-ray, and hitting your head on our bed, I wanted to reflect on a year ago.  Here is the post from your 5 month update.

After I read your 5 month post I almost fell out of my chair.  I have no idea where all this time is going and I wish we could pause it for a little bit. Mommy and I both cherish every day with you even when you have your not so favorite days.  But I have to say you are a FANTASTIC toddler! When you read this one day do not let that get to your head as I am sure you will rub that in our face one day, how perfect of an angel you were.

A year ago you were becoming more flexible eating your toes and sucking your thumb.  It looks like the toe eating has subsided but the thumb sucking looks to have no end in sight.  During your 5 months you began to finally lay on your belly and even rolled over from belly to back.  I can still see this in my head as your mom and I left the room for a second to see if you would roll over.  What a feeling that was to see you progressing.  Today, you are like a toddler full of sugar RUNNING all over the house.  You even climb up the stairs with no assistance.  If I compare your social awareness from a month ago you no longer just smile at people.  You now will say hi and give the occasional wave.  Yes, we are going to be in major trouble with you once you get to be a little older.  In fact, the other  day you pointed at a toddler (of course he was a boy) in a cart at the grocery store and called him be be!! That is how you say baby.  We asked his father how old he was and he was only a month older than you!! I guess you will be picking up the boys in NO time.  Just remember daddy has the final say when it comes to any man that comes into this house! Sorry, you will always be my baby girl even when you THINK you are an adult. 

You still seem to really enjoy food, naps, and you are still one of the happiest now toddlers.  We have been very blessed to have a happy Alayna in our house.  I think we wouldn’t know what to do if you were a fussy toddler because we really haven’t experienced that with you.  I guess I should say we have not had many episodes where you are beyond fussy except for this past month. 

Before we get into what caused your fussiness lets begin with the ever so exciting gastro dr. visit.  We originally had scheduled this appointment to figure out why you had diarrhea for what seemed like FOREVER.  THANKFULLY, the diarrhea episodes finally went away as you were diagnosed with toddler diarrhea.  But the gastro dr. did let us know that we should expect this toddler diarrhea thing to come back again sometime maybe a few years down the road.  If it does come back I hope you are fully potty trained and can handle all the wiping stuff on your own because it was not fun at all changing your diapers.  I should mommy got the brunt of all the diapers because most of these diarrhea episodes occurred while I was at work! 

Back to the gastro dr. appointment, we still kept the appointment as you have been struggling to eat solid foods.  I guess I should rephrase that, you have been gagging/chocking drinking liquids and eating meat and other solid texture foods.  It is really strange because you still love to eat baby food.  In my book, I think you just have texture aversion right now.  So the gastro dr. said he wanted to check your esophagus to make sure that structurally it was OK!  If nothing showed up on the barium x-ray swallow then we would have to do an upper GI scope to check for other stuff. 

Off to the barium x-ray swallow we go.  Honestly, this was terrible I think more so for all of us including your mom and I.  Basically, you were held down by 3 people not including your mom and myself.  They wanted to make sure you didn’t scream and held still during the x-ray pictures while dumping barium down your mouth.  Talk about pure torture for you and your parents! The icing on the cake was the nurse administering the barium had what appeared to be a cold/virus.  She was wiping her noise a lot before giving you the barium.  We were afraid that meant you were going to get your first cold.  Thankfully, the x-rays came revealed that your esophagus structure was perfectly fine.  There was a question on one of the images where it looked like you had some reflux from swallowing the barium.  They suggested you might have some GERD type issue going on there.  Are job is to try some toddler prilosec to see if that will help with your possible gagging/choking.  Today, you seem to be doing a lot better with solids which is strange.  But we still have reluctantly not fed you much meat or anything like that. 

As for the nurse and her cold/virus, you picked up whatever she had a few days after the test.   I can honestly say we are so blessed you have never been sick before this.  It was honestly very tough to see you so upset battling this cold/virus.  You had a temperature of close to 102 degrees thankfully it never got any higher.  The odd thing is that you never developed any other symptoms just a mild fever.  You did however develop a rash that scared us to death.  We took you to the pediatrician and you checked out fine.  That weekend you got extra space in our bed. Yes, you still sleep in our bed on a nightly basis but this time daddy got the couch for two nights.  See look what I do for you!!!! All you wanted was mommy 24/7.  I don’t blame you though as mommy has the power to fix anything!

Also, after your cold symptoms passed, you decided you wanted to go to the pediatrician again.  So what did you do this time.  When daddy was about to change your diaper on our bed you decided it would be fun to toss your entire body backwards and smack the side of your head on the bed frame.  I will tell you it was a loud thud and scared both mommy and I.  So the following day we took you to the dr again to have your head looked at.  You checked out fine no need for concern.  Thank god this is why we have skulls!!!

In other news, you continue to learn new things constantly.  You seem to really like drinking strawberry lemonade from a straw.  Another thing you love is Pizza Hut pizza.  You can eat an entire piece! As for your activity I think you are born to dance.  I don’t know what it is about dancing to music but it truly seems to be something you will love.  Soon we will have you signed up for your first ever dance class.  Guess who gets to participate with you its going to be me your daddy.  It’s a good thing I like to dance with you all around the house. 

Tonight, you decided to say your first full sentence! You just said it out of nowhere.  I guess it was more of a song then a anything.  But it was to Barney.   I sang I love….. You said you.  Then you continued with “you love me!”   It was the cutest thing!   When you read that when you are 13 or whenever I am sure you will be embarrassed.  

As I have said many times in all these monthly updates, you continue to amaze us ever day.  You have given both mommy and me more joy to our life than we could ever imagine.  I cannot wait to see what new things you are doing in a few months. 

We love you always Alayna!

Alayna a year ago! Time flies!! 

Alayna's first art project for her daddy!!  It's her feet!

Family time at the rainforest! Alayna loved all the monkeys 

Who Wants To Raise Cystic Fibrosis Awareness? It's Time For Your Interview

Over the past few months, I have debated about several things that I want to start doing in the CF community.  Through all my interactions with the cysters (female cfer), fibros (male cfer), and parents who make up the CF community there was something that stood out to me.  Everyone has a story tell!!! I guess what I am trying to convey is not a single one of us has the same story but we are overcoming obstacles every day in our life.  Some of these obstacles are directly related to having CF while others are just obstacles on our path to pursing our dreams.   What I want to do is showcase many of the stories that these individuals have as I find them inspirational, insightful, fulfilling, and most of all HOPEFUL.  If it wasn’t for having hope we would all be stuck on the statistics of this disease.  In fact, I still think there are way to many people who are stuck on the statistics of CF.  If we as a community thought just about the statistics we would be missing the gift of today and pursuing our future dreams.  Even with having CF we all can continue to believe in the possibility of accomplishing our dreams!

Recently, I saw a picture posted on Facebook. It said something like this……… “Without awareness, there is no funding. Without funding, there is no research. Without research, there is no cure. Without a cure, there is no hope. We need to work together to make sure there is always hope.”   There is some very powerful phrases/sentences in the above quote.    The first phrase is where it begins!!!  “Without awareness, there is no funding.”  I can tell you that the people I interact with outside the CF community basically have no idea what cystic fibrosis is.  When I tell someone I have cystic fibrosis I hear these common questions. “I have never heard of cystic fibrosis? Is cystic fibrosis the disease that effects your muscles? Are you contagious? I am sorry to hear you have cystic fibrosis.” 

To me that last point of having someone say they are sorry I have cystic fibrosis just rubs me the wrong way.  It would be similar to someone saying to me I am sorry you have hazel eyes, or have black hair (well technically it’s kind of more silver than it has ever been).  This is how I view my cystic fibrosis as if it was a part of me and something just like having hazel eyes, black hair, etc.  If it wasn’t for this disease I can tell you I would be a completely different person.  Instead of running away from the fact that I have a genetic disease I have decided to embrace it. 

I find it challenging to raise awareness if you do not embrace yourself or cystic fibrosis.  We are now in the season where everyone goes on Facebook and starts promoting and selling the Great Strides walk for the cystic fibrosis foundation.  I am really excited to see people out there asking for donations from their friends, families, coworkers, or even complete strangers.  But if you are not sharing how cystic fibrosis has impacted your life then why would someone want to donate to your cause? It’s almost as if we should be selling our accomplishments, struggles, and hurdles we have overcome to be here today.  If we are not sharing our stories with others we are not raising awareness as to why someone should donate to our cause.  We can show people how meaningful our life is even though we suffer from a chronic disease. 

Not only will sharing your story with others outside of our CF community help raise awareness, sharing your story inside the CF community does a lot of good as well.  Many of us with CF know very few individuals who suffer from this disease, at least in person we have not met.  This is why I am reaching out to all of you cysters, fibros, and parents to CFers to share your inspiring story.  You never know how many people will truly benefit from the struggles you have been through and the accomplishments you have achieved.  I like to refer to this community as a bunch of warriors.  We are all fighting the same battle of conquering CF.    

I am going to be featuring what I call interviews with the CF community.  I want as many people to participate as I can get.  This way we can create more awareness and share our stories.  To accomplish this I will be emailing questions to anyone who wants to volunteer to share their story.  You will then send your response back and be featured in your own blog post on my blog.  I will tell you that I have already put this idea to a few of you in the community and so far the response to this interview idea is pretty well received.  In fact I have drafted up some questions to some people who I already know of and their story.  I have been told that these questions are very good and will hopefully help many people out there. 

Here are a few questions from a few interviews I sent out already.  CFers, parents, and significant others will be featured.

CFers

Sample questions.

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

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

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

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

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

Were there things you wished your parents did differently as you grew up with cystic fibrosis?

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?

Since we know you are expecting your miracle child please share with us your feelings on being pregnant and having cystic fibrosis?

Now that we know you have had a lung transplant, how did you view the world before transplant and after transplant?

You have seen a lot of things as I call you a CF veteran.  I know we have talked about 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?

PARENTS TO CFERS

Sample questions.

As a parent how has your child’s diagnosis changed your life?

What was it like hearing your child has CF?

What has your child accomplished despite CF?

Did you know about CF before the diagnosis? If not where did you go to find the information and how did it make you feel?

How do you raise awareness for you child when it comes to CF?

What have you learned about yourself from witnessing your child battle CF?

What worries you the most about your child having CF?

SIGNIFICANT OTHER 

Sample questions

What do you remember from the day you found out your spouse had cystic fibrosis?

How did you view life after you found out your spouse or significant other had cystic fibrosis?

In your words what does it mean to be a spouse or significant other to a CFer?

Who is with me on raising more awareness for this disease?  I want you to share your story and be heard!!! This is going to be a great way for us to bring more awareness and helping many other people in the CF community.  I cannot wait to start featuring everyone!!!  

Please contact me on here leave me a comment. Or send an email to me.  My email address is below after the jtodog23 there is the @ sign.

jtodog23(use the @ sign)yahoo.com

Response To A Parent Whose Teenager Was Newly Diagnosed With CF

The other day I was told by a parent to a CFer that NOT everyone is as lucky and as healthy as me.  HMMM......Well I can honestly say I would agree with that except I will tell anyone and everyone that sometimes when you battle this disease or anything else 50% of that battle comes from our attitude.  If I let myself feel down or sorry about having CF then I am letting those two letters have the upper hand. 

A good friend gave me the book The Last Lecture by Randy Pausch.  There is a famous quote that came to my mind after I read what this parent told me.  “We cannot change the cards we are dealt, just how we play the hand.”  This is how I view my CF.  I may not have had the best hand in the poker game but I am going to do everything I can to try to win at the game of LIFE!   This is one of the greatest quotes to live by for anyone who believes they got dealt a bad hand!!!

I should let everyone know that my first two paragraphs were not directed at this mom.  The above paragraphs are a different topic but just thought I would mention that. The other day I was Facebook messaged by a parent to a newly diagnosed fibro (male cfer).   She was given my name by another mom to a Cfer who I had talked to almost a year ago.  She let this mom know I would have some encouraging words for her.  I guess that right there tells me what I am doing is really helping this community and people are remembering what I have to say even from a year ago!! WOO HOO!!!

Here is how the conversation went. All names have been removed.

Hello... I was given your name by a mom in cf mommas group. If you are open to it, id like to talk to you about cf, my son and some struggles we are having.

Hi MOM, i believe that lady is named BLANK? She is all the way from australia

I have talked with her a good amount before

I am willing to talk to anyone about CF. So go ahead with your questions

Good morning. Yes it was BLANK. She spoke very highly of you. I had made a post on the cf mommas page asking at what age everyones child was diagnosed. My son just turned 13 last month, and was diagnosed in May. He is really struggling with depression, and "mourning" the life he had. She thought you might have some helpful words

Hi MOM,

Sorry for the delay in response time. It's been a little busy around here. So your son is just diagnosed with CF? Well I am sorry that you had to hear the words cystic fibrosis. Did you know about CF before your son's diagnosis? I like to ask this because there are so many people who have never heard of cystic fibrosis until a family member is diagnosed or a friend they know has it.

I will tell you that your son is very similar to me. I was NOT diagnosed with CF until I was 12 years old. I will attach my CF diagnosis post from my blog page. My parents always knew something was wrong with my health as I had constant bronchitis and I was very thin. As a toddler, I was tested for CF and PASSED a sweat test. At that time, the doctor just discontinued looking for CF. I went years and years of my life feeling awful coughing my head off at night to no end. I would wake everyone up in the house from all the coughing. Since I never got a full night sleep, I was run down all the time. I was tired at school, I was tired while I played sports, I was just beat down from all the coughing. I never understood why I couldn't gain any weight but if you are tired you do not want to eat right?

My parents were beyond persistent and finally I had two more sweat tests done in 1995 and 1996. Both tests I PASSED. So NO CF!!!! Then finally the allergist said let’s do a cheek swab to get your DNA tested by a lab for CF. The DNA test revealed that I have CF! It was a big shocker to my parents and family. How could I pass sweat tests and have CF. Well I am not the typical CFer. More on that later.

I didn't even know what CF was at the age of 12. I assume your son is/was in that same boat when he heard of his diagnosis.  All I knew was my parents were upset and I guess I looked at this diagnosis as upsetting as well. But what my parents did from then on is they found a great CF care center. I have been going to the same CF dr. for the last 16 years now. I can honestly say that my CF diagnosis was a blessing in disguise.

I say this because my diagnosis finally changed how I actually felt! I assume your son was not healthy or not feeling 100% most of the time? After a few doctor visits we figured out we needed a plan of attack and a treatment plan. I was cultured for lung bacteria and was found to have what I believe pseudomonas at that time. So we treated it with inhaled antibiotics.

I started using the flutter device and then a few years later we added the VEST. I was starting to feel better and I had energy from all the new treatments and the antibiotics. Today’s CF is so much farther ahead than it was for me 16 years ago! Remember that please!!

I didn't really ever think to myself I wish I had my life back before CF. I actually wish I was diagnosed way earlier in life. This way I could have started to feel better with all the treatments, pills, inhaled meds, etc.

It is tough though at your son's age of 13. He wants to feel like he is "normal" and now having a diagnosis on him may make him feel different. In reality he may not even feel like nothing is wrong with me. Why do I need to do all this treatment, pills, nebs, dr visits, hospitals etc. How was your son feeling in the years leading up to his diagnosis? Maybe you can reassure him now since we have this CF diagnosis we will make you feel better. What does he know about CF?  In my day in age I didn’t have the interent to Google all the scary and sad stories about CF.  I am so THANKFUL that I didn’t have that opportunity nor did my parents : ) There is definitely a lot of stuff out there that can scare a child or young teen. I honestly would stay away from all the dr. google stuff. There is way more good to come from this disease.

I can tell you that I wouldn't be the person I am today without having CF in my life. My entire life perspective is totally different than most people who are 28 years old. I find that I embrace not only my life but my CF life. There is a reason why I have this disease. I may not know the full extent of why I have it but it has lead me to meet some fantastic people who are just like yourself and your son. My passion and love for connecting with people in this community is because of a disease. I have tried to put my life center stage for people like you and your son to see that having CF is just a "diagnosis". I really mean that. It is not a disease that will tell you how you have to live your life because I can tell you after my diagnosis I was still doing the same things I was before. I continued to go to school, be active in sports, play with my friends and everything else through my life I did because I was John and I was not a disease.

What did change is I felt BETTER health wise. Yes, I had to put on a vest, go to the doctor, get antibiotics, etc. But without all those things I wouldn't be able to feel BETTER and live the life I currently do today. I tell many people that CF is just a long for the ride of my life. I will continue to pursue my dreams every day.

I am living proof and there are many others out there who live a "normal" life with CF. I graduated high school, I graduated college, I married my high school sweetheart, we have a miracle daughter, I own a home, I work full time, I do house chores, I get upset, I get mad, I have fun, I laugh, I love to be around people, oh and I have CF. So what I am trying to preach here is that CF is just another part of my life and honestly it has made me a BETTER person because of it.

Your son will go on to do great things in life. He will have the opportunities that many kids do. CF will not limit his ability to pursue his goals in life. But I can tell you the way he gets there is by being dedicated to his health and you have to set the foundation for him by telling him his health is #1.  Everything else falls behind it.

Also, he will view his CF as you view his diagnosis. I know at first this is all new and hard to even understand but I can tell you it will get better with time. You will all develop a routine from this and it will be like getting in the car and putting your seat belt on. It  maybe a little more challenging.

I hope this message helps and I want to answer any questions you may have. I will attach a few posts I think you should read.

Take Care

John

http://livingmydreamswithcf.blogspot.com/2013/07/q-from-newly-diagnosed-parent.html

http://livingmydreamswithcf.blogspot.com/2013/03/parents-accepting-cf-my-response.html

http://livingmydreamswithcf.blogspot.com/p/cf-diagnosis.html

As Randy Pausch said“We cannot change the cards we are dealt, just how we play the hand.” Even the person who has the best hand at the table can lose the game if they do not play the hand well.  This is just like the game of life.  There are so many people who have a great hand but squander it because of their decisions, actions, and lastly ATTITUDE toward life.    

Anything else we can share with this newly diagnosed parent to a teenage Cfer?  I know she will be reading the responses!

 

Thank you!

Alayna 16 Month Post

Really? You are 16 months old today (2/17) Alayna.  I am just glad I am not saying you are 16 YEARS old yet………I know that day is going to be coming faster than I or your mommy could ever imagine.  We still have a lot of growing up to do in fact all of us.  Your mom and I both are still learning this parenting thing.  I have been told by fellow parents including your grandparents that you never stop learning how to be a parent.  Just like how we both will never stop worrying about you.  So get use to it Alayna! I think we could just say you are loved more than you ever would know. 
 
Since I didn’t update on your 15 month birthday we will get you all caught up with what is going on in your life.  To start, let’s go backwards and talk about your 15 month doctor appointment.  Oh I think we will leave out the fact that you have had off and on diarrhea for basically the past month.  The pediatrician believes you have toddler diarrhea which basically is unexplained diarrhea.  Just for the record I get to put whatever I want in these posts about you Alayna.  When you read them one day I am sure you will be fully embarrassed.  But I said I was going to get everyone caught up on what you were doing.  What is even better about all this lovely poo business is that you never have diarrhea when daddy is home so we can all laugh at mommy who gets to clean it.  It does seem that your digestive systems is returning back to normal, FINALLY.  Thank goodness!!!
 
Let’s get back to the 15 month doctor appointment.  So would you be surprised to read that you are still in the 97^th percentile for height? Yes, you are one tall lady 32 5/8 inches. You are know more than half of your mom’s height.  I think that you will be taller than mommy sooner than anyone thinks.  But remember this no matter how tall you are you still have to listen to BOTH your parents.  As for your weight last month you came in at 22 pounds and 7 ounces.  I believe that was in the 25-50^th percentile.  Mommy and I both feel you look way older than any 16 month old we have ever seen.  In fact, when we go to stores or appointments and we see another child who looks around your same height and build they are always older than you. 
 
Your vocabulary is changing quickly.  I guess we can officially say you have learned your first curse word. It is more indirectly being said by you and you have since removed it from your vocabulary! Mommy and I are both pleased you have removed this word.  So how did you start saying the word SHIT! Yep you said it.  I think it all started with when you learned the word shoes and socks.  Soon after that you just kept repeating shoes and socks but the words came out as SHIT! Honestly, it was really hard for us to not laugh.  I am just really glad you have not learned how to say truck.  I have heard that word sounds like fruck! 

You do love to say the word Hi and bye and a few others now.  Unfortunately, you have learned the word NOOOOOOOOOO!!!! Yes that is basically how you say it.  We ask you questions where you should be saying yes to.  For instance, Do you love mommy and daddy? NOOOOOOOOOO is what you say. Do you want to eat? NOOOOOOOO.  Do you want to go take a nap? NOOOOOOOOO.  I know you do not even understand what you are saying yet. 

There is something that I really love about this age you are at.  You love both mommy and me more than anyone else. The greatest feeling for me is when I come through the garage door and there you are waiting with the biggest smile on your face.  You look at me and say Hi and smile.  If I am not having the greatest day that pure 10 seconds of joy you have in your eyes basically wipes any awful 8 hour work day away. 

As for your eating habits.  They are still kind of at a minimum.  You do love grilled cheese or toast n cheese as mommy calls it.  What do you call it?  You love to eat basically any noodles and you still think eating baby food is good.  Currently, you are not that big of a fan of eating meat.  We do get you to eat a few pieces here in there but it has to be disguised with either a gravy, sour cream, or ketchup.  Right now your favorite meat is chicken from the chicken nuggets.  I think what you really do not like is how meat is tough to chew.  You would rather prefer to eat already ground up baby food from gerbers.  Oh well whatever works is fine with us. 

I can tell you that you are one smart little toddler already.  You know what the tv controller is used for.  When you get a hold of the tv remote you always end up dvring (recording) tv shows.  Your mom and I will ask who recorded the customer information channel, or who recorded ESPN?  At least you have yet to order any graphic tv shows or dialed 911.  Speaking of how smart you are you already know how to sing Twinkle Twinkle Little Star and Row Row Row Your Boat.  You even know what the stairs are for.  Not to mention how you basically climbed up the stairs since mommy and daddy forgot to close the gate.  Ooopss!! Luckily, you waited about half way up the stairs. That could have been a recipe for disaster. 
 
How could I forget to mention you love sitting on my lap as I do my airway clearance (vest and hypertonic saline).  I think you just love the fact that you get to go up the stairs and sit and watch the computer for 30 minutes.  When I say let’s go upstairs you race to the staircase and shake the gate to death.  As you climb the stairs all by yourself, you head into daddy’s office where all the lovely CF equipment is.  You wait as patiently as you can to sit in my office chair.  As soon as I turn on the computer and visit the youtube website you go crazy.  I think it’s crazy how you know that website is where you see all your songs and Barney videos.   But before we get the songs going you watch every single move I make putting on my vest getting my neb ready and even hooking myself up to the vest.  I am starting you out very young learning about all this cystic fibrosis stuff.  You will come to see it is just a part of daddy’s daily life.  CF is just along for the ride with us Alayna.  I can honestly say you are the best vest buddy I could ever ask for.  I know that one day you will not be sitting on my lap so I am going to cherish these moments while they last. 

Yesterday, you decided to show us how smart you are.  You found a paper towel and looked at and then spit in it.  Yes, but before you spit in it you cleared your throat. How in the world do you know from only sitting with me for less than a month that I spit my lovely mucus into a paper towel?  I truly think you are wiser beyond your 16 months.  Now we will ask you what do you do with a paper towel?  We hand the paper towel and you look at it and spit in it.  Then you fold it up just like daddy does.  I guess this is what happens when your daddy has CF. You seem to pick up on things very fast.  Pretty smart little kid already.

That is all I can think of right now. But as you can read you are changing and growing up way to fast.  I am just so thankful I am writing your 16 month post instead of your 16 year old birthday.  I have been told that your 16^th birthday will be coming in no time.  For now both mommy and I will cherish every single moment with you!

 

WE LOVE YOU Alayna!

 

 

 

Best smile ever!

 

Alayna you look older than 16 months

 

You decided you wanted to get in the trash can!

 

One of your favorite movies Happy Feet 1&2

 

Big smile after eating all the Valentine Day icing from the cake

 

 

Big girl sitting facing front now!

 

 

Random Update......Kalydeco, CF Meds, Valentine's Day & More

I have done it again, MIA from blogger.  A friend of mine who doesn’t really use Facebook but does read my blog said I have been way behind in blogging.  After looking at my last post it was dated 1/23/14.  It has been just about a month since I last put all my thoughts into words.  In all reality I have been gone from here not because I have nothing to say because trust me I have plenty to say and share with everyone (those that are my friends on Facebook would probably agree).  I have been SO BUSY living life!

Before I start talking about me which I know I do a lot of I want to give an update on my girls.  Here is an update on Alayna and Maria.  I didn’t get the chance to do a monthly update on Alayna for her 15 months.  In fact, tomorrow will be 16 months!!! Where does the time go…………She is growing up faster than any of us would have ever imagined.  Alayna is developing into her own little person as we speak.  She is saying a few words.  As for expressions she definitely can tell us when she is NOT happy.  But most of all she is a big time mommy and daddy’s girl.  She loves us both! One of my favorite aspects of being a dad is when I come home from work even if my day is terrible she can put a smile on my face as soon as I get in the door.  I think her favorite words is Hi! She will say Hi and give me a big kiss.  I will save the rest of the updates until I make her official 16 month post. 

Now for an update on my lovely wife!!  Maria is my rock and she keeps not just me going but this entire family on track. I also do not know how she puts up with me day in and day out.  One of these days I will write about how I am so far from a perfect person. Or wait maybe I should have her write that post!!

 If it wasn’t for Maria I would have a lot more difficult time doing basically EVERYTHING!  I just want to thank you for helping me with the neb sanitization and every other thing you do to keep me and this family on track! It’s just another part of our day, CF ;)  LOVE YOU

When you have a baby it’s a life changing event and even till this day we are still getting use to our new lifestyle.  I can tell you having a child flips your life around 180 degrees.  What makes it easier is having a fantastic wife who understands about your health and can basically change anything on the fly such as adapting to every day changes that occur.  

We did celebrate Valentine ’s Day over the weekend.  It was just Maria and I at lunch and then we went to few stores.  Those are the things you look forward to on Valentine ’s Day when you live a crazy life like this.  I guess I should say our life isn’t crazy it’s just NOT enough hours in a single day to get anything done.  I will also say for those of you who have toddlers or who recently had a child it’s good to take your spouse out.  It pays dividends in keeping you both sane!

Ok on to the boring John stuff……I don’t know where to start so I guess I will start what took place after my doctor appointment.  I mentioned how my clinic was going to look into getting Kalydeco for me.  I sent emails to my  doctor and my research coordinator to show them why I believed Kalydeco would work for me.  Apparently, I thought we were going to see if we could fight for off label use but in reality the research coordinator was checking to see if I would qualify for a clinical trial at my clinic.  She sent my gene mutations to Vertex and they said NO dice.  Oh well I am use to climbing a mountain for the things that are valuable to me.  It just kind of really SUCKS that I know and a few others know in this community know that Kalydeco will work for my gene combination.   

My culture results did come back with the usual suspects that I culture.  I have the love staph growing NOT MRSA and the lovely achromobacter xylosoxidans.  Since my PFT wasn’t in my baseline range I pushed for antibiotics. I have not been on a single antibiotic in over a year.  I know it’s fantastic and hoping I start another streak here of not needing an antibiotic for a while.  We usually do not treat me unless I have more symptoms or have complaints.  Well I guess my complaint is my PFT is lower.   I have now been on Doxycycline for my staph and inhaled meropenem for my achromobacter.  Meropenem is usually done via IV but my dr. believes we can avoid IV’s if we can inhale some meds.

I had a really good experience the first time I ever inhaled meropenem before as it killed my pseudo a year ago.  After that 30 day stint of inhaling this med I have not cultured pseudo in a year.  So I am all for inhaled mero and all for avoiding IV’s.  The only thing is I recalled from last go around at this mero made me feel like complete CRAP the first few days.  I honestly felt like I had influenza and this time around it was no different.  I know mero is a nasty drug so I think my body just had to get use to it the poison that is.  This time around it lasted for about 2 days.  I was a trooper and went to work feeling awful but it was tough. 

How could I forget this in between my dr. visit and starting these drugs I completed a major milestone.  I have been compliant for 365 days on 2/1/2014!  I am still compliant even with adding another 30 minutes of neb time with this meropenem. Eventually, I will make an entire blog post about compliance and what it means to me.  But until then this will do.  Why did I change all this compliance stuff in my life when in all reality I was basically very compliant?  It all boils down to one thing and that is why couldn’t I be 100% compliant.  Before this I was about 97-98% compliant with all my treatment which is still fantastic but for me it’s a no excuse attitude when it comes to treatment time in this household.  What really changed me was when Alayna was born.  It took me a few months to get this mindset that 97-98% wasn’t going to cut it.  If I want to put my best foot forward every day that starts with me and my health.  One thing that NO one can ever take from me or anyone is my dedication to my compliance.  I will never ever have to hear John well you weren’t compliant enough and that is why you are sick.  For me my eye is on the future.  I have big plans in my life to be here on this planet as long as I can to see Alayna go to school for the first time, to witness her get her driver’s license (it’s less than 15 years away YIKES!!), watch her graduate high school, go on to college or whatever it is that she chooses to do after high school, walk her down the wedding aisle, be the grandfather to her children one day, and last but not least be there right along Maria’s side to witness all of these milestones.  As you can see I am driven to see these days and if I do not put myself in the best position to do that I may only have myself to blame.  I will end this compliance paragraph with a quote from my CF mentor Anne ( I LOVE you to death Anne) “Treatments are like money in the bank! Put the time in today and it will pay you back ten fold in the future!” I think that is how the quote goes.  Correct me if I am wrong Anne.

As I love to talk about Kalydeco here is another update on that magic pill.  There is a clinical trial that I may be able to get into to try Kalydeco for 2 weeks (6 week study on the west coast and you are responsible for all travel there is no reimbursement).  Yes, I know 2 weeks that is really not enough time to see if this magical pill works as I have friends who basically were sick with cold like symptoms for up to a month after starting this.  I guess the bigger question is do I even qualify for this study.  The inclusion criteria are not to clear.  But I do fit based on my one gene mutation 3849 as it’s a residual functioning mutation. It states the trial would like a minimum sweat chloride level of 55. For me I do not fit that description.

If you have ever read my CF diagnosis you will remember that I passed sweat tests.  I wasn’t diagnosed with CF until they did the cheek swab and sent my DNA off to a lab where I was found to have DF508 and 3849 + 10 Kb C->t.  The 3849 gene is known to produce normal sweat tests and I fit that description to a T.   I called my CF clinic and also my genetic counselor.  I had two tests done within a year from each other back in 1995 and 1996.  The tests produced numbers of 31 and 28 respectively.  A sweat level below 40 is a normal sweat level. Sweat tests should NOT change through the years as your DNA is basically responsible for this sweat level!

 So why do I have cystic fibrosis???  Based on the sweat chloride I have I shouldn’t have this disease but I know for sure that I have CF.  Not to mention as a newborn a few months old I was tested for CF and again I PASSED my sweat test. My lungs and health have suffered from being diagnosed later in life. Sometimes I do wonder what my lung health would be if I had earlier diagnosis.  I’m thankful we now have newborn screening for CF. Sweat testing is the golden test for CF but in my book it’s basically not a true valid way to tell anyone they have CF.  If even one child slips through the cracks of not being identified with CF its WAY TO MANY! In fact I have some very good friends who have a child in my same boat passing sweats but the child has CF!! I will expand on this topic in a later post.   

Back to the Kalydeco study………Since I have low sweat chloride numbersthat means I have working CFTR at the cell surface at least in my sweat glands.  This should mean that there should be some good working CFTR in my lungs as well.   Kalydeco will help with the working CFTR at the cell surface! That is why I NEED Kalydeco to prevent further declines!  There is a lot for me to think about with this study as it will require lots of money for traveling but also will I even see a benefit in two weeks? If I try to submit these results to the insurance to get Kalydeco off label I know they will throw at me that you were only on this pill for 2 weeks so why should we cover a pill that costs $300,000 a year!!! Ughh decisions decisions.

Thanks for reading and the next post will be about Alayna’s 16 months. I PROMISE I will get that post up this coming week Alayna. Daddy is slacking!