How do you feel about disappointment?
I thought I fully understood disappointment. I felt I had embraced it throughout my adult life as I navigated diabetes, kidney disease and neuropathy. As I was forced to accept all that those chronic diseases took from me.
But when your life is on the line, disappointment means something totally different. Something so painful and frustrating, it cannot be fully or functionally explained.
And that is where my kidney transplant lands me currently.
I was waiting to give an update with the hope of good transplant news.
A few months ago, my transplant team told me I could not proceed with a surgery (even with a donor) until I brought my a1c (3 month blood sugar average) down to what they wanted.
A huge challenge indeed.
But I was up for it.
For those three months I fought to lower my average. I tracked my sugar hourly. I NEVER slipped up on my food choices. Basically I was perfect. (A very unattainable and unhappy way to live).
And though I didn't get my sugars to the exact number requested...I was within range.
YEAHHHHHH! I WAS SO FREAKIN' PROUD OF MYSELF!!!!
I gave my transplant nurse the great news. She called me a week later to tell me that unfortunately they STILL cannot clear me for surgery because I now have to receive two chicken pox vaccines.
I have already had chicken pox, but as luck would have it, somehow my body has lost all immunity.
Now I'm frustrated. As these vaccines add an additional 8 weeks onto my wait time to be listed as active on the deceased transplant list or cleared for surgery.
Fast forward 8 weeks. I diligently attained both vaccines. I sent my paperwork into my nurses' office.
Again--yeah!!!!
Again--I'm sorry Ms. Zopfi but after talking in committee Dr.XXX has decided she wants you to see a gynecologist for your uterine fibroid prior to be listed.
Beyond disappointed.
I actually burst into tears. Sobbing wildly to my nurse about unfairness and exhaustion.
Ending the phone call between confusion, anger and training my mind to trust the process.
I need a kidney to live a healthy life.
I need a kidney sooner than later so that I don't risk the strain of dialysis on my heart muscle.
I need a kidney to find MYSELF again.
So now I have an appointment scheduled with my OB/GYN next week. If they clear me despite my fibroid, I should be listed as active. (Meaning I can receive a transplant when one becomes available.)
In the meantime, I continue 3.5 hours of dialysis 3 times a week.
I plan on decorating for Fall this weekend. I've got more pumpkins than is acceptable or healthy. And I can't wait to put them all over my house! Lol!
I've also been bestowed a hard working husband and fantastic kid. Both of which pull me out of the darkness time and time again. My absolute everything.
Keep your fingers crossed!!
Extra tight. ❤️
