Never a Dull Moment in My Not so Bland Life.Part 2

July 2016

“Good news and not so good news.” I take that line from my husband.  Perhaps that’s a good way to view life, then it’s all good. 😜

It will be 2 years in January that our dear friend Ginny donated a kidney to me, giving me the precious gift of health and freedom. There has rarely been a day I am not aware that everything I have been able to do physically was because of her selfless act.  I will always honor her as my kidney sister. Our family has loved getting to know them better and our daughters are good friends. We have unspeakable respect for her family and parents, and I have been happy to see her healthy and active since January 2015.

When I reflect on the places and faces where we have been, I feel so thankful for a good life. Not an easy one, but good one. I feel glad that I have a reference point of what hard days are physically so that I can embrace the wonderful good days of feeling well.  I know for many, there are days on end with pain.  I’m glad I have tasted a little of that struggle to understand empathy more.  There are many close to me that inspire when I see their struggles and pain, and yet they have what true beauty is… a sweet spirit free of bitterness and complaint. That’s beautiful.

“THE NOT SO GOOD NEWS”

In February my creatinine jumped from 1.2 , to 1.6. This is one of the ways kidney function is measured. Higher is not good. The doctors at the time were alarmed and ordered a biopsy. I kept telling them I was getting over a horrendous 2 week flu one of my Petri dishes (kids) brought home. First biopsy didn’t tell them anything so I went for a second one 1 week later. They came to the conclusion that it was MINOR cellular rejection. It’s common for first year of transplants that things can come up. I was assured that this treatment would work .  They put me in the hospital for the first treatment that lasted 3 days. It made my numbers go up more. The next treatment was harsher and they said that would do the trick, thymoglobulin (rabbit cells). My numbers just climbed higher.  Medication was increased, decreased, and everything but standing on my head while I took my medication was tried.  In September, I went for my 3rd biopsy outside of the institution I had been seen at.  My nephrologist said, “Good news  is there is no sign that your disease came back, no sign your body is rejecting the kidney, and no sign of bacteria, etc.  Unfortunately the kidney appears to be badly scarred and you have 15% function left.” At that point, the doctor recommended that I get re-evaluated and put my name back on the transplant recipient list. Since I don’t drink or smoke how does this happen?  Without sounding frustrated, I do feel like over medicating is a real issue .  Question, get second opinions, and make sure physicians are not just listening to you, but hearing you.  Listen to your instincts too!

Its taken a few weeks to digest and reconcile our hearts and heads for the future. I will get re-evaluated here in AZ starting next week and January 13 I will be seen at UCLA Medical Center.  I am preparing myself for dialysis again and in the meantime I will continue to love God, my family, and friends.  Good days ahead😘

Happy trails