3:30 AM - awake again. :)
It's been quite the journey. I have Polycystic Kidney Disease (PKD), diagnosed a million years ago, when I was 28. I started transplant testing seven years ago, started dialysis six and a half years ago, went through annual bouts of testing, and finally have reached this point, today.
I have spent the last two weeks having several tests, including an MRI of my brain and neck; endoscopy, ultrasound of my stomach and all the various organs. I will have two more this week, a cystoscopy and a stress echo.
I have kind of dreaded these tests. For the past six plus years, there have been many reasons to put me on hold on the transplant list. (They call it "inactive"). And every time I go through a test, I wonder if THIS is the one that will show something that will cause the beady eyes at the transplant center to put on the brakes. I mean, I have been steamrolling down the track the last year, roaring along towards my goal of a kidney transplant. I had several fund raisers this last summer; several individual donors to my cause. My thank you list is longer than my Christmas list and more than half of my Christmas list are not on my thank you list. But I still am composing an announcement (It's a Kidney!!!) that will include both lists and people that aren't on either list. My neighbors, my pharmacist, my nephrologist, my dialysis center, about ten other doctors I have met along the way, people walking by, people standing in the line at Albertson's, strangers.
The hospital where the transplant center is located has this nifty new records system, called Epic. All tests results go to it and the patient gets an email whenever a test result shows up. So, the test results are starting to come in. Blood work on weird things like clotting abilities, antigens - stuff I have to use a medical dictionary to decipher. Saturday night the results came back from my endoscopy. I have the beginnings of Barrett's Esophagus - a potentially dangerous disease that is pre-cancerous.
Whoa! My eyes bugged out and my hand clutched my throat (probably trying to feel the frayed, scarred lining of my esophagus from all those nights of scorching acid reflux attacks). (This is directly related to my polycystic kidneys growing so huge and pushing my stomach up against my esophagus.)
I started to panic. Mechanic Man said not to worry. The surgeon said not to worry. Today my nephrologist said not to worry.
But that's me. Worry is my middle name. I just can't seem to give my worries over. I can't release them. So, I lay awake at night and don't sleep. Worrying that THIS will be the reason to become "inactive". Now, when I am days away from getting a transplant.
