Outrun CF and a little about my journey

Today was absolutely amazing!  We had our outrun CF 5k and here is the group that came to support us!  I love them all and am so grateful for them in my life. 

The whole crew that came this morning.  My awesome sis in laws made some shirts since ours didn't make it in time.  Im feeling very blessed and very loved!

 I have more pictures to follow, but as CF awareness month has ended I just want to share a little about the journey that I have had with CF.  I was born on December 28, 1979 and within 3 days of life had to have surgery.  I had a blockage in my small intestine and had to have 20% of it removed.  My parents weren't sure how I would do with surgery.  In our church, the Church of Jesus Christ of Latter-Day Saints when babies are born they are given a name and a blessing.  This usually happens in the church during our Sacrament service and the baby is all dressed in white.  Due to the circumstances surrounding me, my parents decided to bless me in the hospital.  I did well with surgery and when my mom saw me after surgery she knew that I had Cystic Fibrosis.  My brother that is 2 years older than me has it as well so they knew what they were dealing with.   I wasn't actually diagnosed until about 3 months.  When my brother was diagnosed they were told he would live to be maybe 13.  I cant imagine the devastation that must have been with my parents knowing that 2 of 3 children would most likely not make it to adulthood. 

Fast forward through my life and I don't really recall CF playing a huge role.  I did everything the other kids did.  I did sports, gymnastics, dance and cheered all 4 years of High School. It was rare that CF held me back from anything.  Of course it took a lot of dedication to make sure I did all my treatments and stayed healthy but I didn't feel any different than anybody else.

I think when I really understood that I had a disease was when I was in 4th grade and got pneumonia.  I missed a month of school and knew that wasn't a normal thing. Thankfully throughout my life I have had amazing teachers that were very helpful and supportive and I never got behind.  In 8th grade I remember getting very sick again and for some reason my mom and I had a very irrational idea about going in the hospital, thinking that if I went in there then it was the beginning of the end.  The Drs. worked out a plan that if we stuck to, they wouldn't make me go in the hospital.  I had to do an inhaled antibiotic 3 times a day, this meant I had to go to my Grandmas everyday during lunch and do medicine.  Every night my friend Kevin would come and sit with me and keep me company since it took a really long time to do.  His mom even bought us bean bags to hang out on.  Thankfully I always had the most supportive and loving friends.  When I was 15 the time came that I finally needed to go in the hospital.  I was super scared and truly thought maybe I wouldn't live very long after this.  After that first stay though, I realized it wasn't as scary as I thought and I felt awesome.  In fact those 10 days became days that I looked forward to.  I would have friends come and stay overnight and it became a party with fabulous food.  I continued to go in the hospital every year until I was 21 and then things changed a bit for me. 

I was going to my 4th year of College getting my Bachelors degree in Psychology at Weber State University and living in Ogden.  I had had a few small episodes of hemoptysis, (coughing up blood.) My dr had always said if it was more than 1/4 cup then you needed to worry.  It usually stopped before that so I wasn't too worried.  Then came that fateful day,  I was at Disney on Ice at the Delta Center and I suddenly started to feel weird.  I went up to the bathroom, my cousins boy Dakota came with me because he needed to go too.  I think he was 4.  We were in the bathroom stall and I began coughing up lots and lots of blood.  It was awful and very scary.  I kept telling Dakota that I just had a bloody nose and to turn away.  I really wasn't sure what was going to happen at that point.  Finally it stopped and we went back to our seats.  I remember my grandma telling me I didn't look very good.  I told them after what had occurred.  I believe the next day I ended up in the ER with my oldest brother and the Drs. just sent me home.  Well the bleeding continued on and off and I ended up in the hospital.  The first night there my mom stayed with me and I had the worst bleed I have ever had in my life.  They believe I lost around 6 cups of blood and I nearly needed a transfusion.  I had a lung embolization at that time and didn't have a bleed again until 2 years later when I was pregnant with Cambree. 

A few months later I got married, had a good job and then I began going in the hospital a lot more.   Im sure some  of the reason was from the embolization but I think mostly it was from the stress of my job.  I was placing people with disabilities in a type of foster care and managing the home.  It took a lot out of me.  In fact I had 4 hospital stays in the year and a half that I worked there.  This was unheard of for me.  I then learned that I was pregnant and knew that I needed to quit my job.  Pregnancy went mostly good.  I ended up on oxygen at about 31 weeks and had some severe rib pain that caused things to go downhill fast.  I was admitted at 32 weeks and my PFTs were in the low 20s.  They think they probably got a little worse after this point but I wasn't well enough to do PFTs again.  After being in the hospital for a day I ended up on 8 liters of Oxygen and after a week I had hemoptysis and was intubated and embolized.  Cambree was born at 34 weeks and I was again intubated and embolized right after she was born.  I had one more episode shortly after she was born that I was embolized for, but thankfully both Cambree and I did well and 9 years later Im still here to share my story.  I was on Oxygen 24/7 for about a year and half and amazingly I have been able to come off it for the most part.  I still wear it to exercise and sleep.  There are times when it is needed 24/7 but thankfully they are not very frequent.  These past 9 years I have had to learn a lot more about CF and face fears that I hoped I would never have to face.  I have learned to let go of some things, cleaning my house isn't nearly as important to me as it once was and learning the word no, is something I have had to do.  I have never wanted CF to control any part of my life but with time I have realized it is easier to give into it a little than to fight it.  I have had to learn different ways of doing things.  Playing catch with my daughter requires oxygen.  Pushing my son on the swing or chasing them in the water requires oxygen.  Sometimes its okay to take a nap.  But I have made a promise to myself that if at all possible I will do it, I just might have to do it differently than most.  I learned the hard way that running is just something my body cant do. Im pretty stubborn so sometimes it takes me longer to get it and let go. 

In the past 9 years I have had quite a few hospital stays and with each one there is always the fear wondering if my numbers will come back up and if I will be able to keep pushing on.  Thankfully through the power of prayer, priesthood blessings and faith I know that I am on the right track and my days are not yet over.  I pray I have years yet to live and feel as though I do. 

During my journey I have met some of the most amazing people with CF.  They truly inspire me everyday and I learn from them and hopefully become better because of them.  I am thankful that I get to call them friends.  I have lost some along the way and I like to think they help watch over me.  I miss them, but I am so grateful that I knew them.  I have the most amazing support system.  I don't know what I would do without my family and friends.  I also know without the gospel in my life I would be lost.  I have truly felt the love of my Savior surround me in times when I thought I couldn't go on.  I have been strengthened and lifted and receive the peace and the strength I need to journey on.  I truly think I am the most blessed girl in the world!  I could not have asked for a better husband.  He lifts me up everyday and gives me the strength to push on.  I don't know what I would do without him and my 2 sweet children.  When I don't feel like exercising or doing my medicine I think of them and it doesn't take me long to get my butt in gear.  I do it for them.  I do it for me.  I do it because I am a fighter and I will outrun CF!

Just starting our journey!

papa, Bull and Kathi

This is how we roll.  Ben carrying my backpack and me tied to the leash.  Literal ball and chain:)

Dad, Lesa and Payton

At the finish line.  Feeling good.  My first 5k for the books.

My sweet family!  They make this journey worth living everyday.

My awesome mama who is a rockstar!  I can never repay her for all she does for me.

The nieces and nephews that walked with me.  Jake was awesome!

My brothers and Sisters that were able to come.  I love them all so much and am so grateful for each of them in my life.

The parents, minus my dad that had to leave for a funeral. 

I am truly to grateful today and everyday for all the amazing people that show me so much love and support.  They are my strength and they help me to keep fighting.  One day CF will stand for Cure Found.