Monday morning observation

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 (...

Fresh, ICE COLD water

When I first heard about Tolvaptan, I truly wondered if I'd be able to choke down the amount of water needed to keep my kidneys hydrated and happy. I like water, but TWO GALLONS?!? Yikes. About nine months before starting on the meds, I purchased the Primo Water Cooler Dispenser + Pet Station . I live in a rural area and have well water so wanted to make sure that I wasn't ingesting minerals that could harm my kidneys. Also, I have softened water and wasn't sure if it was increasing my sodium levels - better safe, right? Plus - given that I have three dogs - I loved the idea of tying it together with a water dish for the pups. READ THE DESCRIPTION BEFORE YOU BUY! So somehow I thought it was a self-filling water dish. It is... but only if you self-fill it by pushing the button to fill it. DOH! Oh well. Over the summer, I enjoyed the crisp, clear water but I didn't truly appreciate it. Enter Tolvaptan. Now I CRAVE water. The colder the better. The icier th...

Prep is the key to success

Sat Mar 30 2018 - And the clock is ticking! I was never a scout - but my dad was a scout leader for a while - so that must be where I get my pull (possible neuroses) to always be prepared. So today was a whirlwind (yes, I exaggerate) of activity to get ready for Medication Monday. While Tolvaptan can slow down cyst growth in kidneys, there are two big side effects - possible (temporary) liver damage and loss of body fluids (yes, you pee a lot). The liver function is very closely monitored through bi-weekly liver tests that eventually turn into monthly tests and so on. If they find issues, the drug is discontinued, liver function returns to normal and then you either try a lower dose or stop taking it altogether. My prep was not for that side effect. My prep was for what will become my Two Gallon Habit. That's right. Water is soon to become my best friend as well as my worst nightmare. My first stop was Target. With all the time I'll be spending in the bathroom...

Learning is fundamental

Sun Mar 31 2019 - With a family history like mine, I've done plenty of research on Chronic Kidney Disease ('CKD') as well as Polycystic Kidney Disease ('PKD'). But my opinion is that you can never learn too much and the repetition makes it stick. So when I heard that the Minnesota Chapter of the National Kidney Foundation was hosting an afternoon seminar I was all in. There were four separate tracks: early CKD, Dialysis, Transplant and Pediatric. I went to the early CKD/New Diagnosis sessions. The first session was 'Coping with CKD and Sadness, Despair and Fear' led by a gentleman named Ted Bowman . When he mentioned the name of a book he had written, 'Loss of Dreams: A Special Kind of Grief,' the tears started flowing and continued throughout his presentation. It's what I need to break through now. I need to grieve the future I thought I had and adjust my plans to include the reality of this disease. I need to figure out how to live my ...

My Two Gallon Habit

Search This Blog