There is Hope of Understanding This CKD

Here’s hoping your weekend was as fun filled and happy as mine.

I wanted to tell you a little more about how I calmed myself down enough to understand a little bit of what was happening to me. I’d been told about at my doctor’s office. This was a website from a private company that provided both the much dreaded dialysis and the much needed kidney education. Maybe that wouldn’t be so foreboding for me. I went to the website and clicked on every possible thing I could click on.  This was a little better, but it was a dot com – a for profit site. Maybe it was one that offered all this information so that when you needed dialysis, you would turn to them since they had been so helpful all along.

And what, if anything, was wrong with that? I wasn’t as upset by this site as I was by the American Association of Kidney Patients (AAKP) material. AAKP included a magazine with recipes and another with current articles.  I’d given them short shrift once I’d been alarmed by the other pamphlets, which may not have been fair.

A year and a half later, I revisited the site and found that I somehow managed to overlook their entire educational aspect.  Yes, DaVita is a profit-making company, but they also aim to educate the CKD patient about the disease and how to stay as healthy as possible – not only during dialysis, but before. In other words, during the early CKD stages. They have recipes, explanations of the value of watching potassium or sodium intake and how to do so in your kitchen. There are videos, articles and links. Now that my initial fear had finally decreased, I’d suggest everyone who has CKD log on to, but only when you’re ready. 

I was apparently a lucky patient (How’s that for a contradiction in terms?). I had the time to deny, then admit my fear, work through it and learn as much as I could about my condition.  Of course, in the interim, my doctor explained more to me as did my nutritionist.  I knew no one else with the information I sought and the internet was alternately my best friend and teacher or my worst enemy and nemesis, depending upon my state of mind on any particular day.

I was flagging under the dearth or glut of information depending on the day.  I was having trouble tying all these bits of CKD information together.  My nutritionist noticed I was down during an appointment and asked why.  When I told her, she asked me to wait a moment and then ran out of the room only to return with more magic: a list of helpful websites that included – a renal support network – and, more importantly to me, That was something I could relate to. I was a teacher. I was comfortable with anything that had school in the title.

I eagerly pulled the site up on my computer and wasn’t disappointed.  It was a bit simplistic, but I needed that at this point while I was still dealing with my emotions. I’d both taught and taken online college courses and was comfortable with the format, not that you need this experience to make use of this website. I went back several times to make sure I understood what I’d just learned.

I could do this at my own rate.  If I had a writing deadline and couldn’t work on kidney school that day, it would be waiting right there on my computer for me the next day.  If I was having an emotionally overwhelmed day, I could skip it until the mood passed. But it was there, and it explained. If you’re computer literate or can get someone to work the computer for you, I’d strongly urge you take a look.

This was hope for me at a time when I’d thought I felt hopeless.  I’ll tell you about other sources of information next time.

Until then, keep living!

Published in: on October 19, 2010 at 6:35 pm  Comments (2)  

The URI to TrackBack this entry is:

RSS feed for comments on this post.

2 CommentsLeave a comment

  1. My assumption at this point is that you are receiving a lot of feedback from other people who have CDK. I hope so.

  2. I am. I am also hearing from groups that have asked me to monitor discussion forums for them such as “Kidney Matters” on Facebook’s The Transplant Community Outreach or submit articles such as “” on The Renal Support Network.” Then, there are the online sites such as FB’s American Society of Nephrology page. I’m receiving comments from far and wide, and would love to hear from more people whenever they’re ready to contact me.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: