Kidney news November 2014

Midway through the fifth grade, each of my boys was assigned a fun writing activity –  to create a tale of “fortunate/unfortunate events.”  Kyle’s went something like this:

Robbie wanted a soccer ball.
Unfortunately, he had no money.
Fortunately, his teacher let him go home to get money.
Unfortunately when he got there his house burned down.
Fortunately, no one was hurt.
Unfortunately,…

When I walked out of my nephrologist (kidney doctor) appointment Monday, it occurred to me the last two years of my life have been my fortunate/unfortunate story.  In the early months I would leave my doctor’s office wondering So what DO I have and how bad is it anyway?  Well, the short answer is: I have Chronic Kidney Disease (CKD), and how bad it is depends on who you ask.  The more accurate answer is Worse than anyone originally thought but I think we’re destined for a happy ending.

So for anyone who’s jumping in for the first time to my story, or needs a longer version, here’s the long version of my two-year tale:

• Early 2013, I apply for and am denied life insurance.  What? Why?   “You have too much protein in your urine,” they explain.  No one has ever told me that, and what does that even mean?
• I visit my doctor.  He says it means my kidneys aren’t working well.  But he says insurance wrongly denied me.  My kidney function is poor but switching to a new blood pressure medication should fix it.
• It doesn’t.  Doctor sends me to a nephrologist (kidney doctor).
• Nephrologist looks at my skinny ankles (they’re not swollen) and checks for other CKD symptoms.  He doesn’t seem too worried.
• The lab numbers come back; It’s more serious than he thought.  He sends me to get ultrasound which, he says, shows I have Polycystic Kidney Disease (PKD), a genetic kidney disease.  “50-50 chance your kids have it.  Go talk to their pediatrician,” he cautions me, “If your kidney function continues to drop, you may need a transplant.”  What?!!!
• I start reading everything I find on CKD and PKD.  I learn that I can get evaluated for a transplant when my GFR drops to 20.  (GFR is a measure of kidney function. Anything over 60 is normal.)  At GFR 19 I ask my doctor for a referral but he thinks it’s too early.  “Why get a transplant when you don’t need it yet?” he explains.   Hmmm, all my research states otherwise.
• Fortunately we have world class doctors right here in the Bay Area.  So I trot over the bridge to UCSF to get a second opinion.  My new nephrologist agrees that I should absolutely get a transplant evaluation.  You want to accrue time, he tells me and refers me to the transplant center right away.
• More good news: he tells me I definitely do NOT have PKD (what?!!).  My kids are out of danger (yay!!!)  For anyone who wants to geek out on medical terminology, what I do have is Glomerulonephritis, likely IgA Nephropathy.
• Bad news: We live in the Bay Area.  The wait here for a kidney is about seven to eight years!
• Good news: God has put heroes and angels in my life.  A family member offers to be a living donor.  He starts the evaluation process. (That 8-year wait list is for a deceased donor kidney, but a healthy person can safely donate a kidney anytime.)
• Bad news: My kidney function continues to decline. I’m referred to a urologist. Too much blood in your urine, doctor says, and you have cysts.  More tests. Ultrasound.  MRI.  A lesion in my kidney has gotten bigger.
• Good news: lesion and cysts are harmless.
• Bad news: After months of testing, my potential donor has to terminate donor evaluation process.
• GREAT news:  Another donor has stepped up.  She’s a match and as of this week, she’s completed Phase 1 of her evaluation process and deemed healthy enough to donate! Phase 2 includes the crossmatch, a test to see if my body will reject her kidney.   I can’t tell you who she is except I’ll call her my Angel.
• Bad news: My kidney function this week has dropped to 10%, around the time patients start to feel sick and consider dialysis.  I’m a bit tired and starting to get leg cramps at night, an early symptom.  Nephrologist is sending me to a Dialysis Education class tomorrow just in case.  I also consult with a surgeon who will put in a catheter if I start dialysis.  The best scenario is to get a transplant before I ever start dialysis.
• Doctor also prescribes five more medications for me.  My daily pill count is now 11.  I need a bigger pill box.  Kidneys, I now know, not only remove waste.  They keep your whole body in balance chemically.   But my two misbehaving kidneys are wreaking havoc on my cholesterol, triglycerides, vitamin D, blood pressure, bone density, potassium, protein and parathormone levels.
• Aside from that, I’m actually still feeling great – body, mind and spirit.  I’m not worried about the surgery.  Kidney transplants are the most successful organ transplants, and UCSF has the best surgeons in the world.  Honestly my biggest worry is the anti-rejection drugs I will have to take for the rest of my life after transplant.  They do a great job of keeping the “foreign” kidney in place, but they also suppress my immune system and other whacky things….
• … which leads me to my last bit of sad news: I love, love, love sushi, but I may need to stay away from it once I’m on my immunosuppressive meds after transplant.  But it seems there’s good news for every piece of bad news, even if we have to create some of our goodness, right?  So, I am going out to sushi in a big way before the big day (if it ever comes), and you’re all welcome to join me!

So this is where my story stands right now.  My Angel donor has been busy running around town getting lab work done and submitting to all kinds of tests.  If they test her heart they’ll find it’s made of gold.  Soon it will be my turn to begin my workup, a battery of tests to make sure I’m strong enough for transplant surgery.  I don’t have a date yet, but I’m hoping early 2015.   In the meantime, do something for me… Get your kidney function checked at your next doctor visit.  1 in 10 of you have CKD too, but don’t know it because you feel no symptoms.   Take good care of your kidneys because they’re taking good care of you.