Thursday, March 10, 2011

World Kidney Day: My kidney disease story

Today is World Kidney Day.  I want to share the story of how I was diagnosed, and express how lucky I am!  I also want to encourage every reader of my blog to get a physical this year and specifically request they be screened for kidney disease - it's done simply with blood and urine tests that you should be getting done on a regular basis anyway.  Here is a great explanation of the sorts of things you should be tested for (essentially, what are your kidneys getting out of your blood and what are they leaving in - you don't want them leaking out too much blood and protein or leaving in too much creatinine, which is essentially the toxins/waste they are meant to filter out), as well as why you should be tested even without symptoms.  What is not really said there is that you should also have your blood sugar, cholesterol, and blood pressure tested - but those are generally very standard parts of a physical.

Allow me one more time to emphasize why it is important to do this now and not when you don't feel right.  Kidney disease and high blood pressure are often completely silent killers until it is too late.  Blood pressure causes kidney disease.  Kidney disease causes high blood pressure.  Often, you have no symptoms of either, and that doesn't mean you aren't losing kidney function that you will never get back.  Plus heart disease.  Blood pressure, kidney disease, heart disease - these all go hand-in-hand!


In the spring of 1996 (I was 15), I took a spring break trip with my high school track team.  At some point during the trip, my ankles became very swollen.  I pointed it out to my seatmate on the bus.  They were really pretty gross.  I could poke them and leave dimples.  It went away within a day.  It was strange, but I didn't think much of it.  I had a mildly anxious reaction because my mother's ankles had swelled about a week before her fatal heart attack.  I figured I was being completely dramatic in linking the two.

In the summer of 1997, while I was away at an 8-week arts camp, my ankles swelled again for a day here and there.  I wondered if it was some sort of bizarre travel or stress reaction.  I also started waking up with my eyes very puffy.  I thought I just wasn't getting enough sleep.  Silly me!

I went home from camp about 10lbs heavier than I'd arrived.  Ah.  I must have eaten poorly at camp!

I started boarding school that fall, as an over-achieving junior.  I started out running cross country, but it became clear very quickly that I was never going to sleep if I kept that up.  And then, within the next week, my ankles did the gross swelling thing again.  I paid no attention.  Again I was in a new place and having this bizarre stress reaction I'd developed over the last couple of years!  I just waited for it to go away.

Process of Diagnosis
After a few days, I couldn't wear any shoes that wrapped around my ankles - backless slip-ons were all that fit.  The cross country coach commented and asked if I'd possibly injured myself.  No, I told him.  No injury and no pain - this was just something that seemed to happen from time to time.

And then my ankles got so swollen that I lost range of motion and tripped down some stairs.  I went to see the nurse, who I had been told "just gives Saltines to everyone unless their arm is falling off."

Except she took one look at my ankles, pushed her fingers into the swelling, observed that a crater was left, and said, "you are going to see a doctor right now."

I went to a doctor nearby (I don't even know where!  I was so new to the area, and I was sent by taxi.) and they drew blood, had me pee in a cup, and ordered a chest x-ray.  The doctor told me, "we think you either have a kidney problem or your heart is too small for your body."

I didn't even hear the kidney possibility - what the hell did I know about kidneys at sixteen years old?  No, all I pieced together was that my mother's ankles had swollen about a week before she died of a massive heart attack, and now my ankles were swollen and they were concerned about my heart.  I broke down in tears - alone without anyone who knew me well at all and with a doctor who I don't think I ever saw again!  The only other thing I remember from that day was being told "you are not going to die.  We aren't going to let that happen.  We just need to figure out what's going on."

Heart problems were ruled out pretty quickly - probably because there were abnormal amounts of blood and protein in my urine.  I was sent to a pediatric nephrologist.  I think he was 30 or 45 minutes away from my school, and one of my aunts (who is a doctor) drove in to town and took me to my first appointment.

I vaguely remember being told how to collect my urine for 24 hours.  There was explanation of what sorts of containers I could use (anything, really.  As long as it was washed out!).  And I was told to be careful after I pooped because you often pee after you poop, and I needed to be sure I collected all of my pee.   I probably had eyes as wide as saucers and couldn't keep from giggling nervously.  But I don't really remember.

I spent the next day of school collecting my pee.  Every time I peed, I went to the nurse's office.  I don't remember how I handled collection of my after-hours pee, but I imagine it was the first of many times I discreetly peed in a container in the dorm and tried to hide it in the communal fridge in the kitchen.  (Hey!  Classmates!  I bet you never knew how fast-tracked to popularity I was in my new school!)

The tests came back.  I had kidney problems, but we weren't sure exactly what kind.  I needed to have a needle biopsy.

Two of my aunts (my mother was the oldest of four) came to be with me the day I had this 20-minute outpatient procedure done.  I think because I was a pediatric patient, I was put under general anesthesia (I have since had it done under conscious sedation which - wow! - that is a trip!).  I went to sleep with my aunt the doctor in the room and I woke up in recovery screaming for my mother, who had been dead for a little over three years.  The only other thing I remember from that day is that the IV freaked me out.  I felt like the needle was going to poke out of my arm if I bent my elbow, so I made them splint my arm.  (Cut me some slack!  Perhaps I was a drama queen, but I think I was entitled to some irrational behavior!)

I went back to school with instructions not to lift anything heavy for a week (like, try not to carry more than one textbook at a time).  They stab a needle through the muscle in your lower back to get to your kidneys.  I was a bit tender.  I found it difficult to sleep on a mattress for awhile (I think about a week) and instead slept on the hard floor so that my back wasn't arched.

There were a couple of interactions/snafus with my new classmates - I was still in my first month at a new school, and a school at which I lived with many of my classmates!  They didn't know why I couldn't carry certain things, or why exceptions had been made so I could go to my locker after every class.  I was labeled a snob by some.

Technical Talk
The biopsy results came back.  Idiopathic glomerulonephritis.


I'll break it down as best I can.  I am not a medical professional so feel free to correct me, oh medical and science friends!  

The first word, idiopathic, means the cause is unknown.  I was tested for lupus (several times, actually), they looked for evidence of strep (which can cause an acute version of this disease), I was told not to take NSAIDs (non-steroidal anti-inflammatory drugs - like Ibuprofen/Motrin and Naproxen/Aleve) or aspirin.  I have been tested for AIDS.  I have discussed my family medical history.  Idiopathic.  For better or worse.

The second word, glomerulonephritis, can be broken down into three parts.  The glomeruli (plural of glomerulus) are the little tiny looping blood vessels that essentially act as filters to remove waste and extra water from your blood (hence your blood and urine tell a lot about your kidneys).  Nephron is the name for each glomerulus and tubule pair (the tubule connects the glomerulus to the ureters, which connect to the bladder, which you are familiar with.  I hope.)

So, simply put, the tiny blood vessels that act as the filters in my kidneys are inflamed.  Here's more information if you want it, but I suspect you don't really care, and that's really ok with me.

And then...
This has gotten long, somewhat complicated, and probably pretty boring.  Plus I'm now one-handed as I nurse one of the kiddos I was once told I possibly shouldn't conceive due to this.  There is so much more that has been part of my kidney disease/chronic illness journey.  It seems right to end here, though, with one last tidbit:  I am lucky.  I am lucky to have had early symptoms so that I could be watched and not be blindsided during pregnancy, or at some point after my kidneys have lost function.  I am lucky to have the means to be closely watched.  I am lucky the watchfulness has largely been unneeded because my disease has been relatively slow to progress and hasn't yet claimed any of my kidney function (actually, my kidneys hyperfiltrate, and prove you can have too much of a good thing; it's a sign of distress).  I am lucky - more lucky than I think I can even comprehend - to have two perfect, healthy little boys.

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