Thursday, June 6, 2013

Confessions of a Transplant Patient-- I Still Worry

1 Month 4 Days with Kidney

"I'm still scared," I said to Ben while we lie awake in bed, moments before we both drifted off to sleep.  Ben asked me what I was scared of. 

I've had this awesome, wonderfully functioning kidney for over a month now.  I feel great.  I've never had this much energy, without COFFEE might I add.  I'm waking up early with minimal resistance, and going through the entire day working, running errands, making dinner, doing chores, without wanting to take a nap.  I feel alive and not dull, sleepy, or sluggish.  But behind all this strength and feeling great and toddler-like bouts of energy,  I still feel scared that every day is my last day feeling like this; that every day could be my last day with my dad's kidney.

Since the transplant, I've been going to clinic twice and now once a week to have blood drawn, urine tested, and to meet with the post-op nephrologist, my nurse, and the surgeons to see how I'm doing.  Everything is going well.  Blood pressure is down and normal, and I'm only on 10 milligrams of BP medicine.  My hemoglobin and hematocrit are slowly rising; basically, I have blood now.  And the surgical glue has finally peeled off my wound to reveal a nicely healing scar on my stomach that's halfway covered up by my underwear.  These are the makings of a kidney transplant success story.

Everything is going so well that I feel a little embarrassed and ashamed to admit that I still worry about the future.  There's a little seed in my mind that's taking root and funneling  anxiety into all my positive thoughts.  

I was reminded yesterday, and it wasn't to scare me, that I am one of the people who is at a very high risk for redeveloping my type of kidney disease, FSGS, in my transplanted kidney. FSGS is the reason I had to get the transplant in the first place.    And if it does recur in my dad's kidney, it could be slow or it could be quick, and I'll be back in the same place I was a year ago.  This is what scares me: not knowing if or when this will happen.

Over that last few weeks these thoughts have been fleeting, something that crossed my mind but I immediately dismissed in an effort to not "claim it" like my mom and grandmother always say.  But two nights ago while staring at the ceiling, confessing my fear to Ben, I felt the first tremor of panic and uneasiness in my chest, and the sinking feeling of sadness in my stomach. I ran my hand over my kidney, as if I was trying to keep it from falling out of the closed incision, or trying to protect it and shelter it from a possible fate.  Now that I have it, I don't ever want to lose it.

I don't know how long I will have this kidney.  It is my dream to be one of the lifers that my nurse told me about, the patients who have their transplanted kidney for 30 or even 40 years.  To quote Oprah, what I know for sure:
  • worrying gets you absolutely nowhere;
  • with or without a kidney transplant, I should try to live in the moment of each day, not in anticipation of the next; 
  • God is faithful.  He knows all things and controls all things, and without Him I am devastatingly lost.
Every morning I run my hand over my stomach and examine the scar in the mirror. I take my blood pressure. Normal.  I take my temperature. Normal. I check my ankles and eyes for swelling. None. And I take my first 20 pills of the day.  Another day with my dad's kidney.  And I'm thankful. 
"This is why I tell you:  do not be worried about the food and drink you need in order to stay alive, or about clothes for your body. After all, isn't life worth more than food?  And isn't the body worth more than clothes?  Look at the birds:  they do not plant seeds, gather a harvest and put it in barns; yet your Father in heaven takes care of them!  Aren't you worth much more than birds?  Can any of you live a bit longer by worrying about it?"   Matthew 6:25-27 (GNT)
"So do not start worrying:  'Where will my food come from?  or my drink? or my clothes?' These are the things the pagans are always concerned about.  Your Father in heaven knows that you need all these things."   Matthew 6:31-32