Maddy's Journey with Lung Transplant, CF & Cancer

From her brothers,

Our sister was born with Cystic Fibrosis in 1997.  Her life started out with a very long hospital stay in the intensive care unit. She had surgery at a 24 hours old and it put CF center stage in our family ever since.  

Throughout her life, she has had many struggles with cystic fibrosis as it is a tenacious disease that is constantly challenging Maddy to stay as healthy as possible. For those of you that don't know, CF is a genetic disease that affects anything in your body that makes mucus or has ducts. Her body's ducts and airways get coated with thick mucus that plugs up enough to cause trouble.  As CF progresses, it has had an effect on many organs in her body such as; liver, kidneys, heart, lungs, pancreas, etc. Partner this with MRSA, she picked up at a hospital years ago,- and it has been quite an adventure.  

Maddy is constantly battling MRSA along with her CF as MRSA lives in her lungs and will NEVER go away.  It's like fighting at least two battles at the same time as the conditions in her lungs are favorable to the growth of MRSA - it has definitely made itself at home there. So we fight.  

CF people are susceptible to things in our environment like burkholderia gladioli, pseudomonas, mold, common germs, etc.  While it may not bother you or me, these are all dangers for Maddy. So we fight.

Maddy is now 21 and her current conditions are becoming a long list. We found out we are now fighting; osteoporosis, liver disease, kidney disease, pulmonary hypertension, anemia, hyperthyroidism, sinus disease, CFRD (cystic fibrosis related diabetes) as well as CF and MRSA!

To look at my beautiful sister you would never know all of this is going on.  CF is not on the outside - it raises chaos inside. So therefore, is an invisible disease.  We fight the invisible enemies EVERY DAY.

Too many hospital visits to count over her 21 years.  Far too many.  One that stands out in all of our minds is the one from December 2013 into January 2014. A Christmas we will never forget.  Very sick and on a ventilator while being induced into a coma. Blood going toxic, CO2 way too high, seizures, a brain bruise and doctors urging us to let her pass.  They forgot that WE FIGHT.  Our parents refused to give up and by some miracle she fought back and showed them all.  Did I mention my sister is a fighter?  AND stubborn as hell.  

We have had the opportunity to get Maddy on some fabulous meds, but CF is a monster that will still do what it can to destroy - like an invisible sledge hammer.  MRSA likes to play too, so it's never easy for my sister. 

Now at 21, she had to leave pediatric care and go into adult care.  That really sucks. She also started her double lung transplant evaluation.  Wow is that hard stuff.  Tests that are pretty common to tests that seem out of a movie!

With new doctors come a new perspective. Her lab tests show that all the conditions I mentioned earlier are definitely real and major players.  Her lungs are badly damaged and parts of the left lung are no longer functioning.  She has "blebs" (air pockets or cysts) at the top of both lungs taking up quite a bit of room.  Her lung capacity is ab out 30% so if you were to try to breathe through a straw only - it's about like that - try it - it's not easy is it?

Recently, she had a lung bleed that scared us all.  It's a reminder that CF never sleeps and her lungs are very fragile. As a CF person gets older their
broncial tubes rub on blood vessels causing infections or pneumonias. After coughing up 1/3 cup blood (gross I know) mom had to rush her to
Orlando.  She was on IVs there for a few days awaiting decision on whether or not to embolize the bleeding vessel. Luckily it stopped on its own. We
won this battle and then home to fight some more.

We aren't done with the lung eval testing but should be finishing up most of it next week.  So with all I've told you - she will get listed right?  NO - believe it or not they say she's early.  However since she's had some bleeding (hemoptysis) thing can change quickly... or not... That's the game CF plays.  We wanted to get established so they know her now rather than when it's too late. CF's games are crazy. We stand ready to FIGHT.

When we are listed and get the call - the world changes again.  New lungs will need the optimum environment to stay healthy so we learn a new way of taking care of Maddy.  The good news? Her new lungs will not have MRSA or CF.  Bad news - they are fragile too and must be kept happy. And all of the damage done to her body is done. 

But we say bye by to CF in her lungs. And she gets to breathe like she has never known!  

Why the fundraiser? Well our mom and Maddy go to Orlando all the time for doctors, testing, lung eval stuff.  As things progress and Maddy needs new lungs - a cushion of funds is required. Stupid right?  Yes it is, but we aren't there yet, so when we are I have a feeling they are right. There is a lot involved here.  Family from all over the United States will need to be here to support the family and my parents will miss work.  Our mom and Maddy will also need to live closer to Orlando until she recovers, so expenses are going to be there. So I begin this journey to giving them support and peace of mind that funds are available in the future. 

Make no mistake - CF is a monster of the worst kind.  It is invisible and nasty and takes prisoners.  Not just the person with CF, but all of us that love her.  We all FIGHT. 

Please join us in helping our family prepare for whatever the future brings.  We love our Maddy so much and so WE FIGHT.

Sincerely Maddy's Brothers,
Chance & Layne Arthur