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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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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.

No denying it

So this happened today. Despite being on Jynarque for over a year. Despite increasing the dosage to 90/30. Despite watching my sodium, drinking gallons of water and losing weight. My creatinine levels continue to trend upwards and my eGFR continues to trend down. It's now at 21. Big sigh. Discussions are underway to determine dialysis modality and whether I can do it at home. A fistula consult with the surgeon has been ordered. And I still wait for the transplant evaluation with Mayo (it was rescheduled due to Covid). So if you know anyone who would be interested in helping out a Type O girl with a donated kidney, please send them my way. Take care.

Winner Winner!

Mon Apr 1 2019 - Just look what showed up on my doorstep (okay, it was actually a FedEx driver) by 930am this morning! Super, super exciting!!! I had that box open and my first dose taken in no time at all. My biggest concern now is whether taking it at 930am is going to mess with my sleep. They say that it's best to take the first dose as early as possibly (my plan is 6am) so you can take the second dose as early as possible (8 hours later at 2am) so you're not waking up all night having to go to the bathroom. As it is, I won't be taking my second dose until 530pm. Ugh. Fingers crossed. In the meantime, here's what everything looked like when I opened the box (yes, I took time to actually photograph this momentous moment). After the inspection of the non-med part of the box, I set my bottle of water next to me (I was working from home) and I waited. And I waited. How long would it take before I needed to go to the bathroom?!? Turned out to take 45 min...