2020 Run to Breathe NYC

I am participating in Run to Breathe, Central Park for Team Boomer and the cystic fibrosis community!

I was diagnosed with CF when I was 13 months old.  I managed to live a pretty normal life except for some yearly routine hospitalizations and taking hours out of my every day schedule to fill them with taking dozens of pills, doing chest physical therapy and multiplenebulizers.  As I got older, CF progressed and started to limit the things that I was able to do.  In 2011 my lungs were so bad that I was told without a double lung transplant, I would be dead in less than two years.  

 

After my first transplant I felt amazing.  To be able to finally breathe and not struggle for the first time was the most wonderful feeling in the world.  I recovered and thrived after my surgery.  I went back to work as a nurse in the neonatal ICU, I got engaged, I ran a 10K.  And then I unfortunately caught a virus and ended up in the ICU and was put on life support for about a week, my lungs were so bad that they needed all the extra help they could get and I was put on dialysis because my kidneys shut down at the same time.  I did come out of that and recovered - but never to the extent that I was before life support.  My lung function gradually started to decrease again and I was diagnosed with chronic rejection, most likely caused from the various viruses I caught.  I needed a second double lung transplant, but first needed a fully functional kidney.  My two gracious sisters both got tested and Christine who was the better match donated her kidney to me on 7/8/2014.  With the new kidney I was now an eligible candidate to be re-placed on the lung transplant list.  I waited over 6 months for my second set of lungs.  I lived in the hospital for a total of 96 days because I was too sick to go home.  My miracle did come.  After two dry runs, the third was a success on 2/19/2015.

 

I can’t believe it has been five years since my second double lung transplant.  My lungs are amazing.  I have been skiing many different times, and the thrill of going down the mountains, being able to take in huge, deep breaths, and not needing to stop to catch my breath, is indescribable.  My transplanted kidney is in rejection, but I am stable and have very little symptoms.  My doctors are hopeful that I can stay this way for a while before another kidney transplant is in necessary.  Life is pretty sweet right now.  

But as we all know, that can all change in an instant.  Transplants are great.  They are needed.  Right now it is pretty much the only option to extend your life once you are in end stage CF. But it comes with risks and complications and it is never a guarantee.   

This is why we NEED to find a cure for Cystic Fibrosis as soon as humanly possible.  I’ve seen way too many friends be denied transplant because they are too sick and others that die waiting for lungs that never come.  CF is cruel.  It doesn’t discriminate. 

 

The only way we can get rid of this horrible disease is to find the cure.  We are getting closer and closer every year.  New medications are coming out that are helping to stop the progression of certain mutations but this is not enough.  Nothing will be, until we can finally say CF stands for CURE FOUND.

I am hopeful that one day soon, CF will be cured. It is my dream to live a long, healthy life.  There is nothing my husband and I would love more than to become parents.  We have been trying for quite a few years to make our dream a reality and are hoping that one day soon, we will be able to share all the love we have inside with a child of our own.