The Road Ahead

 Last Wednesday and Thursday I had a LOT of testing done to see if I'm strong enough, yet sick enough for transplant.  I had an EKG, echo, esphogram, x-ray, CT, arterial blood gas, 13 vials of blood drawn, a bone density scan, a right heart cath, and a TB test (I think thats all).  I met with the social worker, the pyschologist, the pulmonolgist, the dietician, and the surgeon.  They all seemed very nice and competent. They explain the donor lungs could come from GA, FL or Puerto Rico.  

Once the team receives a call that there may be a potiential donor, they (the surgery team) run tests on the lungs.  If it is decided they are good enough, I'll be called in.  I have 2 hours to get to the hospital.  Once there, they'll run tests on me and make sure I'm ready.  Let me tell you - mentally I couldn't be more ready.  I went through a period where I was more scared than anything.  But now, I realize more than ever how beautiful life and breathing is.  I look back to when I was 16 in marching band and realize, man I had some strong lungs then... But of course, you don't know what you've got until its gone.  I am ready to breathe. 

So anyway, the surgery can take anywhere from 10-12 hours.  YES - HOURS! I'm told it's because CF lungs are sticky from the mucous, and we need to be cleaned out a little more.  But, I'm also told we do the best with recovery and quality of life afterward =).  They have 2 options for the incision sites.  They can go under my breast line (called a clamshell) or cuts on my sides - it pretty much depends on my stability when I get there.  They usually do under breast for CF patients in case I need to go on the heart-lung machine and they need to do an emergency bypass (kind of neat - kind of scary).   So when I wake up, I'll have 4 chest tubes draining the excess fluid from my chest cavity,2 small tubes for drainage, I'll have a ventilator tube in my throat and my arms will be strapped down. I'll also have a catheter for the potty thing, lol.  I was warned when I wake up, they will be yelling at me to "BREATHE BREATHE BREATHE!" This is to get me breathing with the ventilator, and not against it.  They told me usually the 1st or 2nd day they will take me off the vent, and I'll be BREATHING! On my OWN!  With NEW lungs!  How cool is that!  

I get teary eyed thinking of the miracle of this, really. Someone's family was kind enough to give this gift of air.  Of breathing freely.  Of living.  It's phenomenal!  Beautiful!   So after that I'll begin an intense rehab.  Walking, stretching, using the stationary bike.  I have to get strong.  Especially my lower body because the first 6 months I need to let my scars heal and becareful not to strain.  I can't drive until I'm off pain meds (which will be at least 4-6 months) and I'll need 24 hour care the first 6-8 weeks. Kinda weird, because I'm very independent - or I used to be until I got so sick.  I know having new lungs will make me want to do so much, but I'll be restricted.  Only for a bit, then I can dance! =) I'll be on a new set of meds:  steroids, anti-rejection, laxatives, pain meds and some profilatives (sp?) so I don't get infections.  No more salad bars and I'll have to be an even bigger germaphobe than I am now... but so what! At least ya know I'm clean! 

So all of this is what I have to look forward too... and I'm excited!  I want to run a marathon with my friend Mike, I want to swim with dolphins (getting over a fear of fish), I want to ride my bike on the beach, I want to dance until my feet hurt!  I have so many things I want to do...I want to be able to work and give back.  I really understand my patients - I've been one my whole life!  I think about doing social work for post transplant lung patients too.  More school of course.  Once the energy I'm giving to breathing can go to living - I'm set.  I understand there are challenges I may face, but so what!  I face them now... and I'm surviving.  I want to be able to absorb every ounce of life!  I'm still a newlywed.  But right after I got married my health declined rapidly and drastically.  So I'm ready to REALLY enjoy my husbands company.  Not as a caregiver, but as my husband.  So many wonderful things to look forward to.

I want to mention how grateful I am to those who have joined/donated to my cause (Keep Ashley Kennen Breathing).  This is the life I face, and for you to not have any idea what it's like in my shoes, yet be compassionate enough to still understand is very admirable.  I always say that everyone else is a hero in my eyes because really we are all faced with challenges that may be unspoken.  Some greater than others.  I want those who are invovled in my cause to know my challenges and triumphs.. no hold backs!  I'm grateful to be alive, and ready to be living my life to the max!  Thank you...from the bottom of heart!