Yesterday was another long day at Vanderbilt. What partially made the day long was the early wake-up. My alarm tossed me out of bed at 4:30am. My good pal and buddy and trouper, Linda, met me and we started our decline off the mountain at 6:00am. We arrived at Vanderbilt at 8:30am. The traffic was insane. Bumper-to-bumper on the highways and surface streets.

My day included a battery of tests per clinical trial protocols. It's been 6 months since I re-started Fibrogen's pure drug infusions. I was pleased that Linda had an opportunity to meet many of the people who have taken such good care of me at the Pulmonary Clinic.

PFTs, EKG, 6-minute walk with an oximeter, 3 hours dedicated to an infusion, then a final stop for a HD CAT, then sliding into rush hour traffic and stopping for a delicious dinner. All of this is painless stuff but it's a long day. I pulled into my driveway at 7:30pm.

Yesterday I navigated Vanderbilt with a entourage to rival those about to descend on Nashville for the CMAs. Linda pulled my suitcase filled with oxygen tanks. I had wheels too - Kathleen pushed me from stem to stern in a wheelchair. Perfection!


*****


This is something I do. It's not cool. It's insane. It's infuriating. It's crazy.

Before yesterday's appointments, I'd convinced myself that all test results would indicate a rapid demise. I'd become a nutter of gloom. I'd talked myself into believing I was about to slide into home base. It was horrible. I've vowed to never do it again.

Since my transplant evaluation I haven't trusted to hope. Yup. You read right. I haven't trusted to hope. For two years I was the poster person for hope, then felt it swept away.

I was talking to Kathleen at Vanderbilt this afternoon and she made an observation: my reluctance to hope again is a defense mechanism... especially after the negative results of the transplant evaluation. Kathleen knows so very well that I'm a positive person, full of hope, but I took a huge hit when I received the news about my high PRAs. Ever since then, it's been hard for me to hope - think positively. I needed to regain my footing. And I did some of that today because my test results from yesterday were good! My body defied my brain! There's hope! Yay body! Yay brain thinking with hope again!


*****


After receiving the good news regarding yesterday's tests, I called Cleveland Clinic (CC). In addition to needing to check on the progress of my evaluation possibilities, I had been given the assignment to check on Cleveland Clinic's protocols for certain clinical trials.

I reached my contact. "Hi, this is Irene Fulton, the person who sent a heart catheterization CD in a big red box." I was put on hold... for a long time. When he got back, I was told there was a problem. The CD they received in the big red box did not have the heart catheterization images. It only had the paper report.


screeeeeech.


The dialog inside my head didn't come close to my spoken civility.

CC could not make a request to Vanderbilt for the proper CD because I'm not a patient yet.

I called the Vanderbilt Pulmonary Clinic and spoke with one of my favorite people, Wendi, who took care of everything. A CD of my heart catheterization is being sent overnight to CC. I called this information to my contact at CC. I will follow-up tomorrow.


*****


Shouldn't this all be easier? Each step of the way I've done exactly as I've been told. Most hospital visits, I'm accompanied by a friend - my friends know I've followed the rules - jumped as high as everyone has wanted me to.

It's stressful. Exhausting.

What if I was a bigger nobody than I am and hadn't gotten the assistance I needed today? What happens to people who don't know when or how or who to call? It's daunting. I do every single thing asked of me. I obey every single request. It's sorority rush on steroids. Am I smart enough? Worthy enough? Will you pick me? Please, please pick me! I'll do everything you want me to do. Just ask. Pick me!


*****


Other good news: Trust me, this is good news. In the event Cleveland Clinic doesn't choose to evaluate me, my pulmonary specialist at Vanderbilt already has Plan B set up... Pittsburgh Medical Center, which has also earned high marks with high risk transplant patients.


*****


I have a favor to ask all of you. I have a dear friend, Anna. Her daughter, Sammie, is quite ill with MS. Please forgive my sparse thread of detail regarding Sammie's health - except that she's quite ill and will be having surgery next week. Please stream some prayers to Sammie and her family. I know they will be most appreciative. Me too. Thank you.






Beautiful Sammie