CF Community Interview - Anne (Cyster) Part 1

We all know that this disease can really be a daunting monster to face.  I am beyond lucky to have a wonderful wife and family who are all my biggest cheerleaders.  Sometimes when we think of family we wonder if anyone has gone through a similar battle as we have.  I have noticed in the CF community that there are some families who have a relative that has/had CF.  In my family, this holds true.  My mother's cousin Anne, has cystic fibrosis.  Anne is my second cousin but I can tell you she is more to me than just a second cousin she is like my long lost sister or I should say cyster.  Anne is also my CF MENTOR!!!!!

As I said above, the world of CF is daunting, unknown, and down right scary at times.  Just like when you start a new job or go to college you want to find someone with some experience to enlighten you on what to expect or to show you around.  The same applies to CF.  We all need to find someone who can be our sounding board as well as talk to us about their experience battling CF.  This person is usually what we call a MENTOR! 

I think we really need to think about this as a CF community.  A CF mentor is someone we all need no matter what age we are. Also, it doesn't matter if we are the CFer, the parent to a CFer, or even the spouse to a CFer.  There is so much to be learned, shared, and gained from sharing our experiences with others in the CF community.  If we all can find a go to person to ask questions to and even share our struggles and accomplishments with I think we all will benefit.

In fact,this is one of the biggest reasons I wanted to do a blogger interview series so many of you could meet my CF MENTOR.  Please welcome my beautiful CF MENTOR and second cousin Anne!


Name: Anne - Cyster and double lung transplant recipient

Age: 43

1 year post transplant!!!

***Please share your CF diagnosis:

My parents had 6 children--3 didn't have CF, and 3 did. One of my sisters is a carrier. I'm the last surviving member of my family with CF, and I'll turn 44 next month.

Around the age of 6 I knew I had, "what my brothers had," just due to living with siblings with CF. I played soccer in elementary school, and recall coughing a bit while running, but it didn't slow me down.

Life didn't change much after being, "officially," diagnosed at age 10. I began seeing the same CF doctor my brothers saw at Rainbow, and I started taking the same meds and doing treatments like them. All of these things seemed normal to me, but I can't imagine how difficult it was for my parents dealing with everything.

Thanks to my brothers, there weren't many unknowns in the World of CF. They were well-informed on new meds coming down the pike for CF, and they helped their little sister--me. All in all we lived our lives like many other families.

We all lucked out having pretty positive attitudes. I attribute that to my Mom. She always would say--"Don't worry about things that haven't happened." I took my cues from her and imitated her actions. She was very low-drama, the sky was never falling--at least on her exterior. My Dad was more nervous, and he worked to support us, while my Mom was our primary care giver. Yes, she is Wonder Woman.

I give huge credit to my parents, they instilled in all of us that we could do anything we wanted with our lives! They didn't treat their CF children any differently than our healthy siblings--at least from our point of view. Sure, some things were different--we weren't allowed out of the house without doing our treatments! But those quickly became as normal to do as brushing one's teeth. They taught us to be responsible and committed to our healthcare.

***What did I learn from my brothers' experiences--did it change the way I view my life?

Growing up in a house with 3 CF'ers probably made me think CF was much more common that it really is. In my family there wasn't a minority of healthy kids to CF kids. I felt gifted having 2 brothers with CF, they always helped me.

We lost my brothers--Dave in 1985 at age 31, and Dan at age 38 in 1999. I felt lucky to have them as long as we did. Thanks to them taking meticulous care of themselves, they lived long and good lives in a time that many with CF didn't. I had every conversation I wanted to have with them--a huge gift.

Dave was an Accountant, married with a son. My brother Dan was an Attorney. Both were extremely bright and quick-witted. They were stable and level-headed--not a dramatic family. We were taught to work hard, respect and help others.

***What has been the biggest challenge for me dealing with CF?

Health insurance. I was a Realtor for years, and no health insurance was made available as we were Independent Contractors. I went onto my husband's policy after graduating from college when we married in 1994. His policy had no restrictions on pre-existing conditions, so I was instantly insured. A huge gift. However years later we divorced, and things became tricky again.

***Please share any triumphs due to CF?

It's living a really good life regardless of the difficult conditions I've encountered. I've had numerous hospital stays as many people with CF do. We began adding up the time I'd been hospitalized, but we stopped counting at 4 years! There were things I missed out on over the years, but all of those hospital stays got me to where I am now....alive!

I've been gifted with friends who have warm hearts. My male life-partner, Joe, is a great person, and we have great people in our lives. Speaking of Joe, he is my rock, my friend and my love. We've walked so many paths together during the 15 years we've known one another. He always brings calm in the worse moments! Life wouldn't be nearly as colorful and fun without him!

**How did you view the world before transplant and after?

People with CF now have the option to receive a lung transplant if they wish to pursue it. When I was born, and in my teen years and into my 20's, people just weren't getting wheeled off for lung transplants. It wasn't mentioned as an end-stage option. With the invention of some of the newer generation Anti-rejection meds, the statistics for survival have increased. I've run into lung transplant patients at Cleveland Clinic 15 plus years from their transplant date. Statistics show about 50% of the transplant patients are alive 5 years after transplant.

So the transplant-less world I grew up in meant keeping myself as healthy as possible. Period. I didn't know realize there'd be a second chance at life. Death is a great motivator for staying as healthy as possible!

Post-transplant--I marveled at modern science and the strength of the Human Spirit. In my Donor family's darkest hour, they decided to donate their loved ones organs. Because of their decision, I'm alive.

There was an organ "drought," for some time when I was waiting for lungs. Things were down to the wire, and I wasn't long for this world. I could see clearly what was important in life at that time. That part of it really is a gift. For me it was the people in my life and the relationships.

And for any workoholic out there--there was not a moment I thought, "Oh, I wish I would've worked more." Also unimportant were worldly possessions. Don Henley from the Eagles may have said it best in one of this songs--"You ain't seen no hearses with luggage racks."

I prepared my will and planned my funeral in the hopes of sparing my loved ones from doing so if the lungs didn't come in time. Also, doing those things gave me some control in a world where I had none. I was so ill, I couldn't even brush my own teeth. I felt like a blob of cells on my hospital bed. I learned what true patience is. I felt horrible about my parents possibly losing their 3rd child to CF, but all I could do was my very best. That's what I did. I lived for many months just doing my breathing treatments and trying to eat.

Joe showed me what love was: He worked all day, drove home, showered, then drove from Akron to Cleveland to visit me each night at the hospital. He did this over many years. Surely, too many, but somehow you make it through. Receiving a lung transplant was Redemption for all of that.

Anyway, the selflessness to donate a loved one's organs at the most difficult time near their death is amazing. I think of my Donor and her family each day.

A simple thing like being able to sing along with a song is a miracle. I thank her and her family, and I feel the very best way to do that is living my life in a way to respect the organs she gave to me. I take optimal care of these lungs. I live life humbled by everything I've experienced thus far.

If it's within your own principles, please become an Organ Donor. Most importantly, let your family know of your wishes to do so.

Thumbs up going into transplant surgery!

***What advice would I give to someone on the lung transplant list?

It isn't easy, but you're much stronger than you know. You CAN do this! The human spirit can soar to heights we never knew it was capable of reaching!

Talk with other transplant patients. Do you want minimal info so you're not scared? I wanted tons of info! It took away some fears for me. The breathless nights waiting for The Call--it felt like I was suffocating. Those were really hard times, but going through them empowered me. Due to CF and a lung transplant, there isn't much that rocks my world anymore :)

All of the difficult times before transplant fade away after a double lung transplant. In my experience, it has been completely worth all I went through to make it to The Other Side. Transplant is truly an Epic Journey.

The Other Side is--Breathing freely and unencumbered by oxygen tanks! The Other Side is getting your laugh back! The Other Side is being able to prepare Thanksgiving dinner for 30 + people 5 months after getting new lungs! The Other Side is seeing your nephew begin kindergarten and another graduate from college! The Other Side is getting a puppy--and walking her all over!

My true happiness comes when I'm giving back to other transplant or CF patients. A post-transplant patient helped my considerably before my transplant. All I wanted to do since then was make it to The Other Side and pay it forward to other patients.

Also, spending time with our friends, family, healthcare workers and the rest of the village that it took to get me to--and through--lung transplant. Joe and I still thank our lucky stars for all of the support. The people at Rainbow became our second family! We spent more time with them than our real families for a long time. The gave us the gift of humor and kept us sane.

It's amazing being well enough to help my 82 year-old parents! They've helped me for so long, it's a gift to help take care of them and take them to doctor appointments. Ya, The Other Side is a really good place :)

  

6 months post transplant - Christmas Eve!

**Were there things I wished your parents did differently when I was growing up in regards to CF?

Of course! I wanted to stay out later in high school! I wanted to do what most teenagers want to do--test my boundaries. My parents kept a good balance in our lives of work and play. Treatments weren't a big deal--more of something that needed to be done--and they always were.

My brothers and I received hand percussion for our postural drainage. So if anyone deserves to complain--it's my Mom! She did ALL of our treatments--that's 2 full treatments on 3 of us each and every day. I don't know how she did it. She also cooked a beautiful meal each night, and we ate as a family at 6:00.

Possibly the fair question is: What did my parents wish I did differently as their child with CF? Possibly it takes getting older to fully appreciate all the sacrifices our parents make for us. I can clearly see all the things my parents did and I'm truly grateful. At this point they're probably sick of me telling them!

***The early days of CF compared to now?

The CF Center at Rainbow in Cleveland was the first CF Center in the United States, and it would become the one all other CF Centers were modeled after. My brothers were there in the early days. Everything was new and the protocol was just getting established, it was an exciting and groundbreaking time in CF.

One difference was with health insurance. No representative from anyone's insurance co. was appearing at the hospital trying to get your doctor to discharge you back then. Sadly, it happens all of the time now.

Also, hospital rules were more relaxed. I can recall being in the hospital with my brother, Dan, and watching fireworks on the 4th of July from the roof of Rainbow! So fun! One would not find an unlocked stairwell to the roof now!

Also, CF patients weren't segregated back then. There were no private rooms and we all had at least one roommate. There was a gal who became a great friend of mine. Our every-6-month-clean-outs were pretty much on the same schedule, so many times we shared a hospital room together. Her name was Pam and she was from Lansing, MI. We were as different as day and night! She wanted to sleep in and I got up at 7:00 A.M. to do my aerosols! No matter what, we really enjoyed one another.

One summer, the nurses allowed Pam and I to sit out on a roof connecting the old Rainbow to another building--it had an outdoor patio area. We put on our bikinis and got our IV meds outside! Yes, things were laid back then.

With the birth of frivolous lawsuits, HIPPA and too many regulations, life as a hospital patient was bound to change. And it did. Cuts in the budgets were able to be noticed in every aspect of hospital care.

At the same time, medicine was progressing by leaps and bounds. CF treatments progressed, and oddly, in some ways it remained the same.

December of 1984 was my first hospital stay at Rainbow. I was a freshman in high school and had caught Mononucleosis. I was an in-patient for over a month, and my brother, Dave, and I shared a hospital room. It was easier for my parents to visit us.

In 2012, 28 years after I'd first been a patient at Rainbow, I had my last hospital stay there. On June 30th, 2012, The Call came that lungs were available! In the middle of the night Joe drove us out of the parking deck at Rainbow, and down the street to get new lungs. I was as excited as a kid going to Disney World!

In retrospect during that last stay at Rainbow, I on many of the same antibiotics that I was on during my first stay in 1984. I did the same treatments, too. Some of the aerosols were new and they'd probably helped me put off lung transplant until age 42.

I witnessed an amazing time in the World of CF. It has come SO far! So many meds have been approved! The Vest and the Flutter and so many other tools came along to help move secretions! Surely, there are more that have come along that I know nothing about. It keeps getting better and better.

How things have changed over the years in CF and medicine could be a book in and of itself. My retired CF doctor, Carl Doershuk, wrote a book about CF from the beginning to around the time he retired in 1997. Amazing seeing it from his eyes. He was there when it all began, he was one of the Pioneers. 

TO BE CONTINUED...............................................................


John's Notes:

I guess it looks like this writing bug is in the family!  All I can think of is just WOW.  Anne's words are beyond powerful.  I can feel this story not just hear it.  It looks like as I have said in many blogs that a CFer will view their CF just as their parents view it.  I know Anne was blessed with a gift to have the parents she does.  Not only the parents she has but seeing her two brothers battle this disease I think really made Anne that much stronger as a person.

If you are not an organ donor and you have read this interview there is NO reason you should not be an organ donor.  What I love from this first part of the interview is you get to Anne appreciating all the graces of life.  Not only is she thankful but she gives back countlessly to the CF community and the organ donation community.  I have referred many people to my cousin just because she is willing to share her life going through transplant.  If anyone wants to talk with her I have her email address and she is willing to offer what advice she has.

Come back later this week to catch part 2 of this AMAZING interview.

If you missed the first interview with Maria my spouse here it is. Maria Interview.

Birthday & The FUTURE POST

This past Sunday I turned 29! So what does that mean to me?  Yes, it’s my last year of my 20s. One thing is for sure, I will not change how I view my life.  I have been blessed with more immaterial and material things than I ever thought I would ever have in my life!  How did I celebrate my birthday?  I celebrated with family as those are the people you can count on the most in your life!!  I am not really big into throwing a huge birthday bash as I am more of a low key person.  Many of you who are my friends on Facebook noticed I did not even put my birthday on Facebook as in what day it is.  I guess I should say that is mainly because I took over Maria’s Facebook account.  In fact, her birthday date is used on Facebook, not mine!  But I am sure a lot of people will still wish me happy birthday on Maria’s birthday.

Today, at work we went out to celebrate my birthday which is a really wonderful gesture from my boss.  I was asked by a co-worker if I celebrated any milestones with my birthday. I should let you know that this co-worker doesn’t know I have CF.  Yes, some people I work with do not know I have CF while others do know I have CF.  Anyway, I replied with this statement. I’m 29 years old now and every year is a milestone in my book!   My co-worker said well that isn’t a milestone.  Yes, I know I am not 16 (driving privileges), I am not 18 (adult and voting), I am not 21 which is beyond overrated (legal drinking age), I am not 30, I am not 40, I am not 50, I am not 60, I am not 65 etc.  You get the point.  But for whatever reason this just rubbed me the wrong way that I was not hitting a milestone with my “new” age.   As I said, every year is a milestone even for those without CF as no single day is guaranteed to anyone.  I have the same chance of not waking up tomorrow just as you do or the same chance of getting hit by a bus.  Ok, I understand I have CF maybe that gray cloud could cover the sun a little more than other people’s cloud but I refuse to be a Debbie downer!

I have not really ever talked about this topic on my blog but I will tell you that it’s a miracle that I am even here today.  So what am I hiding?  Well thankfully, I was way to young to ever remember this and I do not want to over emphasize something that has happened to probably many infants when they first entered the world.   As soon as I came out I did not cry! That meant I wasn’t breathing!! According to my dad, he recalls how blue I was all over my body.  The doctor, the nurses, and the rest of the staff paged the crash cart! I guess just before all the electrical shockers arrived I decided to stop scaring everyone and took my first breaths.  I honestly, have no idea how my parents felt during those few seconds which probably felt like an eternity with me not breathing.   Maybe this was my first sign that I had CF.  To bad it took the doctors and everyone else involved 12 years from that point on to figure out I have CF. 

What is the point of me even sharing what happened today at lunch and what happened to me when I was first born?  I don’t really know but maybe it’s because I just wanted to write about appreciating life and not taking a single day for granted on this planet.  I think sometimes the people who do not have an underlying health condition truly do not embrace the life they have been given.  There are also a good amount of people with an underlying health condition who still do not embrace life!  There are days when I hear/see/read that some people find a negative to focus on in their life.  Maybe we have been trained as a society that negative news sells so lets focus on something negative in our life and beat our self up about how negative our life is.  Or the theory of you only live once. It’s so cliché that people use the “you only live once” excuse about why they don’t take care of themselves.  In my book “you only live once” is more reason than anything to embrace your health and your life.   

As I sit here and think back on my very young life at 29 I am beyond blessed to have hit on so many milestones in my life whether that is an age milestone or another accomplishment.  I have been able to see myself change from a child, to a teenager, to an adult, to a husband, to a father in this short time.  I will say that as I have aged I have grown to appreciate more things in life than I have ever before.  I guess as a child and a teenager you are still trying to figure out the meaning and value in life.  In all reality, sometimes I do have days where I am down about things and they aren’t always tied to CF.  Those things that bring me down some days could be life events, things that occur at work, or just other things that I have no control over.  But I will tell you those days are very few and far between the days where I find many positives in my life.  I never take for granted that I got out of bed today, I get to put on a vest and inhale what seems like the ocean via hypertonic saline before I start my day, I get to put in 8 hours of work 5 days a week to financially help my family, I get to go home to a beautiful wife and miracle daughter who love me more than I could ever put into words, I get to spend quality time with the people I love and who love me for me every day, and I get the opportunity to make memories every day.  You see this is what drives me every single day to put my best foot forward.  I cannot wait to see what my life looks like in a month from now, a year from now, 5 years from now, 10 years from now, 20 years from now, and even 50 years from now.  That’s what keeps my motivation clicking on all cylinders, the FUTURE!!!

I am not only doing what I do every day for my family but I am putting 110% of my effort into life for the people who have lost their battle to CF!   No one knows when their time will be up but I refuse to ever take a single day for granted.  I hope many of you find something positive in your every day life because negativity only brings us down!  

“Yesterday is gone. Tomorrow has not yet come.

We have only today. Let us begin.”

―Mother Teresa

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!