The Story

All of these lines across my face 

Tell you the story of who I am 

So many stories of where I've been  

And how I got to where I am
But these stories don't mean anything 

When you've got no one to tell them to.

Brandi Carlisle, "The Story"

 

Over the past few years, I :

- Had the time of my life at N.C. State and obtained 2 degrees

- Started and finished graduate school at Meredith College
- Became a Registered Dietitian
- Got married to the love of my life
- Worked at a health department 
- Quit the health dept. and started at a hospital as a clinical dietitan
- Went to Disney World this past February

I didn't expect "my story" to take the turn it did last March. 

 

 March - June: Sick with cystic fibrosis exacerbations each month, became dependent on supplemental oxygen and could tell a huge difference in my quality of living.  We had been discussing lung transplantation for a few years with my team at UNC, but I was not quite sick enough to get evaluated.  By June, my pulmonogist thought I was "in my transplant window", and we should really pursue it.  In the midst of this, Justin and I bought a house and moved in in May! 

July: Through some appointments and calls, I found out my insurance would not cover a transplant at UNC.  So, I got a referral to Duke Medical Center.  Duke has a very large lung transplant program, short wait times and good outcomes.  In the midest of this, we went on a one week mountain vacation with the Sherrills and I helped host a couple baby showers. 

August:  Attended a full evaluation week at Duke, full of scans, x-rays, blood work, swallow studies and consultations with their team (social work, psych, RD, MD, surgeon, finance, etc).  It was exhausting.  The evaluation is to determine if my other organ systems are healthy enough to withstand the surgery and meds afterward, as well as judge my physical, mental and social well-being.  I also decided it was time to go out of work, which has been a big adjustment.  So I thought, "If I am going to be home, it's time to get a dog".  And we did!  We hosted a house-warming party, and our friends Amy and David had a baby soon 2 days after our party :-)  We also went to Gastonia for Grandmother's 92nd birthday, and Hugh and Nicky came over to bring me Gail's hutch.    

September:  More clinic appointments and a few more eval tests - a right heart cath, esophageal manometry and an EGD with Bravo pH study.  So far, things are going well, and I seem to be progressing towards listing.  My main goal right now is to gain weight, about 7 pounds total before surgery.  I started a pulmonary rehab class at Duke, which is 5 days/week for 3-4 hours that is specifically for pre and post-lung transplant patients.  We attended Laura and Tylor's wedding.  And as you can see on my blog post, I had a great birthday.

Update: Then on December 2, 2012 ... I got the call that changed my life.