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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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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 (...

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...

Running on empty

Energy. What's that? During my last nephology appointment, I mentioned that my stamina was declining and that I'm, in a word, TIRED! My doctor's first thought was to check TSH (thyroid-stimulating hormone) levels. Excellent idea. Unfortunately, my levels are medicated, controlled, recently tested and within the 'normal' range. Oops. To be fair, my energy levels are reminiscent of the months prior to being diagnosed with hypothyroidism - not quite as severe, but still not good. On days I work from home - I'm a data analyst/programmer - I frequently have to either take a nap over my lunch break or crash once I'm done for the day. On days I go into the office, I often myself in bed by 8pm (and sometimes earlier). Sigh. This is no way to live life. I've asked about this in the  Polycystic Cysterhood Facebook group  and others agree that they've seen their stamina and energy flag as kidney function has declined. At least I'm not alone. U...

Truth

The need is real! I don't know if it's because prior to Tolvaptan I routinely used mind over matter to delay my trips to the restroom, but I think I'm doing okay these days. Is it possible that I built up bladder muscles over the years? Don't get me wrong, the need to pee is omnipresent. But it's one of those things where I can make note of it, finish what I'm doing (or finish a couple more things) and then make my way to the facilities without the fear of letting things fly. But I'm not stupid. You'd better believe I'm making the restroom my last stop before starting my 45 to 60 minute commute to/from work. A soggy crotch is NOT becoming.

Expensive but affordable

There's no denying it. Tolvaptan - brand name Jynarque - is CRAZY expensive. The wholesale price is just north of $13,000... A MONTH! Dear God. I've searched and searched to find out how much pharmacies are beings charged for the drug, as well as my insurance company, but I've yet to find a source. Surely there has to be some kind of 'negotiated price' like you see with healthcare?!? My doctor suggested increasing my dosage - after I'd already received the next month's supply - and I about hyperventilated. There's no returning drugs and the thought of wasting $13,000 of pills left me queasy. So instead, we decided that I'd stay on the lower dose for another month and then increase the dose the next time. Deep breaths... Regardless, Otsuka (manufacturer of the drug) is working to make sure that the patients' out of pocket for the drug is manageable. Through their MyPASS program , patients with commercial insurance can acquire the pr...