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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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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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Ice is nice

Continuing with my love of cold water is my love of ice! My office has a wonderful pellet/nugget ice maker and I'll admit that I fill two water bottles with the frozen gold before I leave for the day. Maybe I should bring an insulated thermos and haul it home in bulk. Hmmm. So it's no wonder that I've tried to find a similar model to have at home. Well if you have $3,500 lying around and would like to send it to me for my ice fund, that would be great. In the meantime, I'll have to settle for something "close" to perfection. Online reviews say that the Portable Opal Nugget Ice Maker is the perfect compromise for home use. Not that it comes cheap. Amazon had it listed for $475 when I wrote this. For frozen water. You may also know this as "the good ice". Opal makes the chewable, crunchable, flavor-saving nugget ice you love. The Opal is an affordable nugget ice maker for your home. Opal only does one thing: make chewable, crave able nugget ic...
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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...
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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...
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