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Chronic Kidney Disease

Chronic Kidney Disease ('CKD') is a condition where kidneys are unable to adequately filter the blood to remove normally-occurring toxins and waste that accumulate in the body. Conditions that can occur as a result of declining kidney function include high blood pressure, anemia, weak bones, neurological issues, nutritional deficiencies and heart and blood vessel disease.

Source: Fresenius Kidney Care
Yikes!

The top cause of CKD is Diabetes. I used to think that preventing Diabetic CKD was as simple as controlling your blood sugar but my nephrologist set me straight. Just like with PKD, there are genetic predispositions to developing it. So if your family health history includes Diabetes combined with CKD, be proactive with your health and actively work to control blood pressure and maintain normal blood glucose levels.

High blood pressure is the #2 risk factor for CKD. It weakens blood vessels in the kidneys, making it difficult to remove waste and liquid from the blood. Water retention raises blood pressure even more and suddenly you have all the makings for a vicious circle. Healthcare recommendations are similar to a Adam Ant song - don't drink, don't smoke... Actually, you're advised to control your blood pressure to under 140/90 (with meds if necessary), exercise, eat healthy, DON'T SMOKE and reduce stress.

Is that all?!?

Number three is Glomerular Disease (say what?) which is when the tiny filters within the kidney are damaged. As with everything else, the ability to filter waste is compromised, fluid builds up and you may leak protein and red blood cells into your urine. How attractive... Treatment is to control your blood pressure, remove excess fluid with diuretics and possibly treat the immune system with corticosteriods.

Number four is near and dear to my heart - Polycystic Kidney Disease - so we'll take a look at that on a separate page.

What are the symptoms of CKD you may ask?

  • lack of energy / fatigue
  • difficulties concentrating
  • lack of appetite
  • water retention - including swollen legs & ankles as well as a puffy morning face
  • sleep issues - including not being able to, having to get up to pee and leg muscle cramping
  • dry, itchy skin
Don't those sound like fairly generic symptoms?

The failsafe way to know is to go to your doctor and have lab work performed. Your main metric - at least at the beginning - is going to be eGFR which stands for Estimated Glomerular Filtration Rate. The general idea is that it represents the percent of kidney function that you have. So a result of 100 is cause for celebration whereas a result of 30 (my current level) is cause for concern. This table helps you to determine where you are on the 'bad kidney' scale:

Source: National Kidney Foundation
Follow up tests (once you get a low eGFR) may include an ultrasound, CT scan, MRI and/or a kidney biopsy. Family health history (grandmother, mother and maternal uncle) and an ultrasound were all it took for my confirmed ADPKD diagnosis.

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Artificial kidney

I have a somewhat fanciful thought of what an artificial kidney would look like. I see a device that is shaped like a kidney (of course) but is completely clear so you could see all the blood circulating through it. Granted, once it's implanted no one's going to see it but - hey - it's my vision. The closest picture I can find of what's in my mind's eye is this image. Granted, that's a picture of a kidney-shaped paper weight and it's a little cloudy, but I know you can picture it too. My, oh my. My imagination is not even close to reality. According to a post from the American Journal of Kidney Diseases , there are three new approaches being explored right now: the automated wearable artificial kidney ('AWAK'), the wearable artificial kidney ('WAK') and the implantable artificial kidney ('IAK'). My money's on the IAK and you'll understand why once I show you the concept pictures of the other two. The AWAK is said to ...

One more for the books

I had the quarterly appointment with my nephrologist the other day - one of the "bonuses" of being on Jynarque is that they monitor, monitor, monitor the heck out of you. And I'm happy to say that all my levels are stable - eGFR (we've decided to call me early Stage 4 since I've been teetering between 3b and 4 for the past 5-7 months), liver enzymes, calcium, phosphates, glucose, potassium, sodium, Vitamin D... Oops! Then there's that nasty Intact Parathyroid test. TOTALLY different story... Not only is it higher than last year - and increase of 75% - but now I'm outside the normal range. Sound the alarms! But wait. What exactly is the parathyroid? What does it do? And is this normal for a Stage 4 PKD patient? The parathyroid glands (four of them) are about the size of a grain of rice - or a pea, depends on your source - and they are located on your thyroid. They release a hormone (PTH) that regulates the amount of calcium in your blood ...

Live in the moment

I'm a thinker, a what if-er. I analyze things to within an inch of their life. Live in the moment? What's that? Nothing is straight forward with PKD. The unpredictable nature makes it impossible to create solid plans. And the decisions you think you can make are often conflicting. Case in point, Tolvaptan. Taking it should slow down kidney decline, delaying my need for dialysis and/or transplant. Yet the older I am before I need a transplant, the higher my Expected Post Transplant Survival score is (a lower score means greater survival rate and, if 20 or less, a high quality kidney). But I'm really hoping to stave off dialysis/transplant until there's a viable implantable artificial kidney. See what I mean? I guess the bottom line is that I have to have faith and trust that whatever happens was meant to be. What are the words from the Serenity Prayer? God grant me the SERENITY to accept the thing I cannot change, the COURAGE to change the things I can and ...

And so it begins

At my last appointment, the nephrologist actually offered to give me a referral for transplant. And then a week later I got THIS in the mail from my insurance company. Crap! It's getting real now. If something like that doesn't take the wind out of your sails, I don't know what will. Granted I had let my doctor know a couple of months ago that I wanted to be screened and ready to go as soon as my eGFR hit 20. Did I think it would be this year? No. My estimates were three years from now. Yet the combination of the four point eGFR drop + the transplant referral leads me to believe that my DOCTOR believes I should hit 20 within the year. I don't think I'm going to be able to last until the artificial kidney comes out. :-(