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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 (at 51?), high blood pressure and other comorbidities.

Deep breath.

That's why mantras such as this one are important reminders to keep around.

Things will change. I'm strong and I've overcome challenges before. Every day offers the possibility of learning and growth. There may be a bigger plan out there for me that I just can't picture. I deserve to enjoy my life but when I'm not at my best I refuse to chastise myself. I don't have time for your drama because I'M TOO BUSY BEING THANKFUL for all the good in my life.
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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 ...
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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 ...
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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 ...
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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. :-(
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