The Day I Was Diagnosed as Being Totally Tubular – or How I Learned to Love RTA

Have I mentioned how much I dislike the urology practice to which I go?  No?  Probably because if I get on a roll about it, I won’t stop.  Let’s just say that today did  nothing to redeem this practice in terms of how much faith I have in them.

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So today was my post-surgical follow up visit after stones were removed from my kidneys.  The stones were analyzed, and they were deemed to be mostly calcium phosphate stones.  After further review of my medical records, the doctor diagnosed me with a disease called Renal Tubular Acidosis.  It sounds way more fun than I think it’s actually going to be.  When I hear “tubular”, I think waves and sand and sun kissed surfers with white blonde hair and a six pack (abdominal and liquid).  Apparently, this is not the case.

I have more tests to go through over the next few weeks, but I think the most important test that lies ahead of me is the test of my courage at finding another urology practice.  I hate starting over with new doctors, and there is a big part of me that thinks if I stay on top of my care with this office, I can negate any potential damage the incompetence of the staff will cause (like today, when I walked in, and they wanted to know about taking my stent out.  Ummm, you mean the one I took out myself after 48 hours, as instructed?).

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While untreated, this disease can lead to total kidney failure, I had a really awesome sign that made me feel so much better about the way things will go.  My dad, who died from renal failure as a complication of his diabetes, loved Tiny Tim from the Charles Dickens story “A Christmas Carol”.  I grew up loving the story, and even now, I will watch every version I can find over the Christmas holidays.  Driving home from the urologist, worried about this new diagnosis, I started furiously Googling to see what information I could find that the doctor didn’t give me (which, by the way, was none).  I found this:

One researcher has theorized that Charles Dickens may have been describing a child with RTA in the character of Tiny Tim from A Christmas Carol. Tiny Tim’s small stature, malformed limbs, and periods of weakness are all possible consequences of the chemical imbalance caused by RTA.1 In the story, Tiny Tim recovers when he receives medical treatment, which would likely have included sodium bicarbonate and sodium citrate, alkaline agents to neutralize acidic blood. The good news is that medical treatment can indeed reverse the effects of RTA.

Pretty sure it was a sign from my dad.

And on that note –

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N is for Nephrology – a-to-z blog challenge

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Nephrology is the study of diseases of the kidney.  There are lots of diseases of the kidney.  I happen to be the recipient of one chronic kidney condition that truly is the gift that keeps on giving.

I have chronic kidney stones.  Some people are great at many things.  It turns out, I am great at one – making really awesome, amazingly sized, freaks of nature kidney stones.

This, as you may imagine, is not fun.  Believe it or not, I can tolerate the pain for the most part.  It’s the messing with my ability to pee that irks me.

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I don’t have time to go at whim, so it’s important that I maintain an ability to “hold it”.  Kidney stones impede that ability.  Most of the time, I am timing a potty break before a kitchen timer beeps, a school bell rings, or I have to be out the door to go somewhere.  When I sit, I expect the few seconds of inconvenience on my way to where I am destined to be.  Kidney stones have made it so that I’m not quite sure I’m finished when I think I’m finished.

Believe me, I know, with the possibilities of other medical conditions I could be afflicted with, this is minor among them.  And I am grateful this is what I have to put up with compared with others.

But allow an old broad a few minutes to moan.

National Kidney Foundation Kidney Walk Philadelphia 2008

So this is my dad.  My father was a diabetic – a bad diabetic.  He was the kind of diabetic who made root beer floats with real ice cream and diet soda.  He was the kind of diabetic that ate butter on sticky buns, then upped his insulin to help his body compensate.

At some point, when you are a bad diabetic, the disease starts to kick your ass.  It robs you of things a little at a time.  You get a sore that won’t heal; your eyes start to go; you begin to have heart problems; your circulation slows down; you could lose your legs, like my dad did; and most of all, your kidneys stop working.

My dad’s kidneys stopped working in the early 1990’s, and he ended up on peritoneal dialysis.  That was good for him, because it allowed him to continue to travel and be active.  And it was thanks in part to the money raised by the National Kidney Foundation that things like peritoneal dialysis come to be. 

Eventually, my dad received a kidney from the wonderful family of a man who lost his life.  A portion of all of the money raised by the National Kidney Foundation goes towards organ donor awareness.  Imagine my surprise when I did manage to pull a team together!  And I got an even bigger surprise when that team generated more than $1100 raised to benefit the National Kidney Foundation!

Thank you, to my friends, my family, my team – who walked in memory of my dad – for helping raise this money!  I know my dad would have been so proud – and he would have enjoyed the walk around the zoo with his grandchildren and nieces!  It was a terrific experience, and I’m hoping we can do just as much to help again next year.

It was my goal when I decided to walk for the National Kidney Foundation to raise money that might help another family recognize the benefit of organ donation and the various treatments for kidney disease.  I wanted other families to know that kidney disease does not have to mean life is over and you curl up in a ball and wait for the rest of your body to shut down.  I wanted people to be aware that help is out there if you are battling kidney disease.

I set my fund raising goal at $200.  I thought I would be lucky to get that, even if I did get a team together.