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Monday morning observation


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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...
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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 ...
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It's getting real...

I looked at my phone messages on Monday night and was excited to find a call from the Mayo Clinic. Would they tell me that I had to wait for further deterioration before I could be evaluated for transplant? Or would they tell me to make the drive to Rochester to go through a battery of tests and meetings? It turned out to be the latter. Yay! They're going to evaluate me for transplant in April! Wait a minute. They're going to evaluate me for transplant... Crap. As they say in the movies (?), shit's getting real. I'm trying to stay positive, telling myself that this way I'll be able to get my name on the transplant list as soon as my eGFR hits 20. I'll be able to maximize my time on the list. But every so often, the positivity slips and the fear and anxiety appear. And the questions. All the questions... Will I be able to keep working? Will I be able to afford this? How will this affect my retirement? Will I be able to retire early? How will I pay...
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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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I'm now 'that person'

I remember watching sit-coms where the older people were stereotyped as talking about nothing other than their current (and past) aches and pains. I used to laugh and think 'how ridiculous'. No more. I've become that person... and I'm not even that old! It's so hard when something totally consumes you, whether it be a new hobby, a new beau or a progressing disease. Your mind becomes consumed. And when people ask a single innocent question, it seems like the dam bursts and suddenly this single track of thoughts come gushing out. TMI! Too much information! So now the question is... how do i balance who I am WITHOUT the disease with the person I am WITH the disease?!? I don't want to hide anything, but do people really need to know the details of persistent flank pain, the timing difficulties I face due to medications that interact, blood test results and the gut-wrenching, paralyzing FEAR that I experience when I let myself think about things for too lon...
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