Coming to Terms with CKD Day by Day

It’s not all gloom and doom as I discovered. Gradually, very gradually, as I began to understand more and more about my disease in the privacy of my own home and at my own rate, I got stronger emotionally and was able to look at more complicated or technical sites. I began to read novels that had characters with CKD. It wasn’t an easy task to find them, but the card catalogue – which is usually electronic – and the librarian were great helps until I figured out how to find them myself via an ever narrowing subject search.

I continued to look for books like this one (using the search terms medical self-help or medical narrative, just in case you were wondering), but I didn’t find them. I began to think my nephrologist was right. I’d have to write one. But I wanted to make sure I understood the information before I started writing and so researched even more.

I thought would be helpful since it is the official website of the National Kidney Foundation, but it was a little too social for me.  I was one of those people who would rather not be a member of any group if I could help it.  I was drawn to some of the educational parts of the site, which I found after clicking on patients, then Chronic Kidney Disease.

The American Kidney Fund at, while a helpful site, also wasn’t my cup of tea.  I shied away from the obvious request for donations even as I realized they’d need money to continue their work. Was it the ads? The busy website?  I knew it was a valuable site but not for me. I’d urge you to visit as many different CKD sites as you can.  You’ll find some – although sometimes even one is enough – that resonate with you.

I was down to the last website on the list the nutritionist had given me: Kidney and Urological Diseases at the United States Department of Health and Human Services.  The officious title itself was enough to make me leery, but I dutifully went to the URL: I discovered that by clicking on Kidney & Urological Diseases on the homepage, I was sent to which I could have typed in to avoid the homepage entirely. At this address, I found easily understood fact sheets, educational material, an awareness and prevention program and was even directed to additional sources of information about CKD. It was also simple to navigate on this site.

I was pleased to see the variety of brochures available from the different sites. I wasn’t so sure I really wanted to learn about dialysis and transplantation yet, but I could still learn about the hows and whys of CKD by requesting only the brochures I was comfortable reading. I was ready to learn more, and this helped pace my learning.

That decision also helped me decide not to discuss dialysis or transplantation in this book. There were numerous books, brochures, and websites that dealt with these weighty issues and besides, I wasn’t there yet. What could I write about my experience with them if I had none?

That’s also the reason I don’t deal with children’s CKD in this book. My children are fortunate enough not to have this disease and, I have to admit that I found it harder to deal with the thought of a child with this disease than my having it.  Some might say I’m old, have lived my life.  I say I’m older and have lived a great deal of my life, something a child has not yet had the time to do.

 I did contact MedCure. This company will pick up your body after you die, harvest your tissues and organs for research and education and cremate the rest of you to give the ashes to whomever you designate. They will also scatter your ashes, if you’d prefer. This costs nothing, but they will test your body before accepting it.  According to their website, they will be testing for “…infectious disease or condition such as Hepatitis B or C, HIV/AIDS, active tuberculosis, history of illegal drug use, incarceration or severely under or overweight at the time of death.”

MedCure is the company I contacted.  I’m sure there are others. Their contract is a legal document under the Uniform Anatomical Gift Act and their home state’s Oregon Anatomical Gift Statutes. I noticed there is such an organization in my home state, but it doesn’t seem to matter where you live.  I will die eventually, CKD or no CKD, and feel my children should not be burdened with additional decisions on my behalf at that time.  This is a personal decision, but I did want you to know such places exist.

So much for ending on a high note today.  At any rate, have a wonderful weekend.  Hope I run into you somewhere in Tombstone where we’ll be visiting this weekend. 

Until then, keep living!

Published in: on October 22, 2010 at 7:12 pm  Comments (2)  

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  1. Your blog is great! Another website that might interest you or your readers is I Hate Dialysis. It’s free from spam (moderated) and members are a combination of pre-ESRD, in ESRD, transplant recipients, caregivers, and a couple of nephrologists check in once in a while.

    • Thanks for the kudo. I looked at the blog you mentioned and, while it was chock full of information for dialysis and pre-dialysis patients, I think (hope, pray) that it’s a little too advanced in our disease for those in the early stages of Chronic Kidney Disease.

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