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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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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. :-(

Words to live by

I never knew - couldn't even fathom - how tough it is to live with a chronic disease. Sure I've been hypothyroid for YEARS but it never really felt serious. I take a little pill once a day. There are no side effects. I get my energy back. Good and good. Polycystic Kidney Disease is nothing like that. There is no cure - save transplant. But even then you take anti-rejection drugs for life. If you forget your meds, you risk transplant rejection. How's that for adding a little anxiety to your anxiety? There is a single drug that SLOWS DOWN the disease's progression, but that promise of dialysis and/or transplant is always right over the horizon. The side effects of that drug are constant thirst and the knowledge of every public rest room within a hundred miles. And while you wait for the disease to progress, you get to experience soul draining fatigue, anxiety, physical discomfort as your kidneys expand to fill your abdominal cavity, the look of a pregnant belly (...

What a night!

Tues Apr 2 2019 - Oh dear God! What a night! That plant? Yeah. Could have been me. Not taking my second dose until 530pm? Never going to happen again. Wow. Just wow. I woke up every 90 minutes. I went to the bathroom every 90 minutes. I GUZZLED water every 90 minutes. I felt like I was traversing a desert and hadn't had a drink in days. I drank three liters (about 3/4 of a gallon) of water DURING THE NIGHT! Who does that?!? So here are my learnings from my first day & night on Tolvaptan: Don't take the meds late - make sure I get that first dose in at 6am and that second dose in at 2pm, Start building up that bladder durability during the day. Act like it's strength training. Feel the urge and delay going as long as is feasible (accidents are not an option). Hopefully this will allow me to sleep longer than 90 minutes. If I'm going to drink that much water, I'm prepping it before going to bed and having it bed side. Last night I was running up...

Teach us to fish

I've recently started trying to educate myself on current research and insights around PKD and all the diseases that seem to show up along with it.  While it's exciting to learn that we're on the verge of significant innovation in how CKD and PKD are diagnosed and treated, I find myself a bit disappointed. Instead of shouting the news from the roof tops... instead of spreading the excitement, the medical community hides the punchline. They share their findings in dry journal articles, steeped in language that is hard to understand. I realize the audience for the articles is not Joe or Jane Public. I realize that they're scholarly discussions of research methodology, statistics, inference and conclusion. I also realize that this is potentially a single data point that may, or may not, contradict current beliefs. Regardless, wouldn't it be nice if these studies included a simply worded summary of the work? Something easily consumable by the general pu...

Round 2 deja vu

My doctor decided to keep me at the initial 45/15 mg dose for another months so I'm anticipating a similar water consumption. Here are the first four of seven (?) or eight (?) five gallon bottles of water. My local grocery store has a water bottle fill station for an extremely reasonable 39 cents a gallon. The frugal side of me thinks I should invest in reusable water bottles and take advantage of the savings. The lazy side of me thinks that it'd be a total hassle to wash the bottles, keep bugs and dust from falling into them before I'm able to refill them, remember to take them with me to the store (I can't even remember those reusable shopping bags) and then stockpile a source of bottle caps. It's just so much easier to buy these recyclable five gallon bottles. Lazy beats frugal.