Katey Ballard-CF Warrior-February 4, 1985 to March 9, 2014

I was sad to discover the loss of another CF Warrior this week, Katey Ballard.  I have been following Katey's blog and story since I starting blogging, back in 2009.  Katey lead an amazing life and was a true inspiration to me in so many ways.  She was a double lung transplant recipient, was able to balance obtaining a nursing degree while managing complications with CF, traveled to Africa to help those in need, worked as a nurse, and was highly involved in raising awareness and funds through the Cystic Fibrosis Foundation

Katey was engaged to be married in just 45 days.  While I feel so sad about her death, I feel even more sad she was not able to experience her wedding day.  She was so excited.  All the planning.  Its hard to understand why she was taken so soon.

Katey's number one priority in life was her faith in the Lord.  She was dedicated to the Lord in so many ways. Through her blog, I often found inspiration in her faith in the Lord's plan.  No matter how hard things where in Katey's life, she put all her faith in God.  I know she is in heaven now.  Safe, breathing, with big angel wings.

Katey, you have been a great friend.  Sharing in this disease is sometimes the only way to cope.  Thank you for teaching me to push through, no matter how difficult.  You were so strong, I will continue to grow and learn from your strength.  Loving and missing you.

Katey's blog signature

Inspiration

Inspiration can come up in different ways and sometimes unexpectedly. Living with a chronic illness inspiration is an important part of my life.  Sometimes inspiration comes from other CFers.  Seeing those living with dedication to their health can be uplifting and motivating.  Inspiration can come from a stranger....sometimes just some else at the gym working hard.  Inspiration can come from a quote, a fictitious character or a star athlete.  Today, I found inspiration in an very unexpected person.  Matthew McConaughey

I have never really been a fan of Matthew McConaughey as an actor.  Yes, he has been in some good movies (Magic Mike!) and some really not so great movies (Failure to Launch).  Actually Failure to Launch is probably one of the worst movies ever.  It was bad.  It was so bad it made McConaughy look like a terrible actor.  I did like him in Lincoln Lawyer.  And if I thought really hard, I could probably come up with a few other movies he was ok in.  But just "ok."  So when I heard that McConaughy was nominated for an Oscar, I had a really hard believing he was worthy.  And when I saw that he won, I was a little shocked.  Perhaps not the fairest assessment considering I have not seen Dallas Buyers Club, but I was just stuck on thinking of his previous, less-than-stellar performances.

Then today at the gym I watched his acceptance speech.  It was an instant paradigm shift. In the three minute plus speech, I went from looking at this guy as an actor getting by on his good looks to a man full of courage, wisdom, and inspiration.  A man I can learn something from.  A man who has learned how to make his life meaningful and appreciate what he has been given.  Was his performance worthy of an Oscar?  Who knows...but that has to be one of the best acceptances speeches I have seen.

There have been some great speeches in the line of Academy Award Winners.  Tom Hanks, Sean Penn, and Adrian Brody top my list of favorites.  I am happy to add McConaughy to the list.  These actors have so much more to offer us than a movie or TV show.  They can offer motivation and inspiration to achieve goals, respect others, and maybe most importantly, respect ourselves.

Today is a Gift

Last year I decided to turn my blog to private and take a break from the blogging world all together.  I am now ready to reactivate No Two Snowflakes Are Alike! Reasons for the private setting are in the past and not even worth discussing.  The only thing I can do is move forward.  But I will say this, I missed blogging.  I missed writing.  I missed reading other people's blogs.  But what I have really missed more than anything is the networking with other CFers.  It is time to reestablish my relationships.  I recognize how important CF networking has been for me.  It has helped with my motivation in treatments, exercise, and general compliance.  It is also a coping mechanism.  Meeting others with CF changed my life.  I don't want to lose those relationships.

There is a favorite saying I want to share that helps me just move forward:

Tomorrow is a mystery
Yesterday is history
Today is a gift, that is why it is called the present

All I can do is appreciate today and look forward to tomorrow.

Any new blogs out there I should be following???

Getting Back to Normal

It has been six days since my last antibiotic dose and it seems like I am back to my baseline.  No more headaches, which means my energy level is back up.  I am back to a more regular schedule at the gym.  And back in the pool since being PICC free!  I went to water aerobics today and it felt great to be back in the water.  Most important, my PFTs are back to baseline too.  My FEV one is back to 91%, just where I was in October.  It took a lot of work to get back there and it is going to take a lot of work to stay there.  But seeing a 15% drop in such a short time is enough motivation for me to keep up with all of my meds, treatments, exercise, and remembering to find time to rest.  All that is left is checking in with the doctor to hear his thoughts on the reaction to the medication.

Post IV Update

On February 5th, I started IV antibiotics for the third time in my life.  The treatment helped with my sinus infection and headaches, but not without a few complications along the way.  Initially, my treatment was scheduled for 14 days.  Around day 10 the doctors office checked in with me and I was not feeling any better.  Although the green stuff cleared up from my sinuses, I was still experiencing daily headaches, which were leaving me completely exhausted.  The doctor decided to extend my treatment for 7 more days.  It is hard to face a treatment not working.  

Around day 18 of my treatment, I started to notice that my chest would hurt briefly at the beginning of administering the medication.  This lead to my legs aching and ultimately a fever.  After contacting the doctor, we decided to stop the treatment early.  I was feeling so much better by then, we figured it was not worth the complications to have three more days of antibiotics.  With that my line was pulled on Monday and I have been feeling great ever since.  

But it leaves the question...why the fevers?  This happened to me last time towards the end of the treatment.  For now, I really don't think it is something that warrants worrying, but it does leave a small amount of worry about next time I need IVs. The doctor indicated that I may need to do IVs in the hospital next time to complete the whole treatment under observation.  Hopefully, that day is a long way off.  

CF Clinic Update

When I went into clinic on Friday, I knew I was not feeling my best.  The week before I had food poisoning, which took me nearly three days to recover from.  It left me feeling tired and with no appetite.  Also, during the course of the past couple months my sinuses have been giving me problems on and off.  The last two weeks I have been back to having headaches and pain, which propels an extreme exhaustion.  But through it all, my lungs felt great, so why then did I find myself with a 15% drop in FEV1?  As I stood there facing my lowest PFTs ever, I was determined to blow my normal range.  I tired my hardest and the numbers would not budge.  As I tried to reflect on why the sudden and surprising decrease in lung function.  I realized there were actually a lot of contributing factors:

I have not been implementing my normal exercise routine,
I have not been 100% compliant with treatments, and
Low energy was inhibiting my ability to put forth the maximum effort needed to do the test.

Looking back at these reason, I really should not be surprised by the drop.  Really this is a wake up call.  It is a reminder of how hard I have to work to stay ahead of this disease.  I cannot take my high PFTs for granted.  It is time to get back on track.

But before that, I will be starting IV antibiotics this week.  I go in for the PICC line today.  I really didn't expect IVs walking into clinic, but I know it is really the right course for "maximum medical therapy" as my doc calls it.

Joey Yerves- A CF Warrior, November 1, 1985 - January 29, 2013

I am having a hard time finding the right words to describe my feelings with the passing of Joey, a beautiful soul who lost his life to Cystic Fibrosis yesterday.  I initially made contact with Joey through facebook in 2011. He was waiting for a double lung transplant.  His life was dependent on new lungs.  I felt a natural connection to Joey because at the time he was living in the same city as me.  Within weeks of connecting, Joey received his call for new lungs.  It was a miracle really. Those lungs saved his life.  

Over the past year and a half, I have been able to get to know Joey a little better, mostly through facebook posts.  He was a unique soul. He started his own record label and recording studio DEEP BREATH RECORDS. Joey was an artist creating his own music, a lot based on this experiences with CF.  He loved cars and he had a couple awesome tattoos.  

Joey lost his life due to rejection of his transplanted lungs. I am thankful to have had Joey in my life.  He taught me to stay strong and be a fighter.  Take chances.  Just breathe.  

Love you Joey.  I'll miss you now and always.  

Colleen