I Needed a Book!

It feels like it’s time to cut  this blog down to two or three times a week.  I’m finishing up the first edit of a book on the subject and starting a new film, so I’m starting to feel a bit pressured.  I’ll also have to start prepping for the humanities course I’ll start teaching in October, so that requires quite a bit of time, too, since I’m not happy unless I’m thorough in my preparations for a book, a role or a course.

Let’s see, now where was I?  Ah, I remember. The theory was that my CKD was associated with the high blood pressure I’d had for over 20 years since I didn’t have any of the other presumed causes: diabetes, years of almost daily use of non-steroidal anti-inflammatories (e.g. Advil, Aleve, Motrin, Tylenol, Ibuprofen, etc.), long time or high dosage use of Lithium, or multiple corrective surgeries for urinary drainage as a child. Nor was I a Native American, Alaskan Native, Hispanic with 17% more CKD occurrence, Pacific Islander or Afro-American with 15% more occurrence of CKD, so I didn’t have a higher susceptibility to CKD, except for the fact that I was over 50, another group that is more affected by CKD.

I wasn’t even male, which might have slightly raised my chances for contracting this disease. I’d never had gout, the disease in which uric acid usually excreted in the urine goes into the blood instead, so that couldn’t be the cause.  I hadn’t developed high levels of triglycerides along with low levels of HDL cholesterol so that was out as a possible predictor that I’d develop CKD.

All we could look at was the hypertension and my age, although the age factor wasn’t mentioned until two years into my disease. Obesity is sometimes suspect since it can lead to diabetes, a cause of CKD.  But, I didn’t have any indications of diabetes, despite my weight, not even high blood sugar. 

My problem in understanding this was that my hypertension had been controlled for those 20 years. How could a controlled problem cause another problem? There seemed to be no answer. Recently, I’ve even come across a theory that a potassium deficiency could also be a cause. 

At a subsequent nephrologist visit, it was explained that this disease could also be age related since the number of nephrons (filtering units) decrease as you age, that I’d continue to lose about 1/2% of my kidney function each year. That made more sense to me than successfully treated hypertension causing it.  You age, your kidneys age.

The number of nephrons decrease, as does the amount of kidney tissue. If the blood vessels supplying the kidneys harden, it will take the kidneys longer to filter your blood. The formerly elastic tissue of the bladder wall is replaced with tough, fibrous tissue so that the bladder is less stretchable.  When the muscles weaken, you may not empty your bladder completely. 

Oh boy, did I have a lot to look forward to, especially if this process had already started.    Of course, the cause still can’t be pinpointed, but I liked that idea that dialysis wouldn’t be entering the picture for at least 20 years according to the expected kidney function percentage for the next 20 years. As I researched, I began to realize that the thought of dialysis – not the disease itself – was what had been frightening and repulsing me.

As for what CKD is, I was told that it’s a slowly decreasing function of the kidneys. Of course, then I needed to see a chart of where the kidneys are and an explanation of what they did. It wasn’t any of the kidney diseases I’d uncovered in my research (Aha! No wonder that was so confusing.), it was simple Chronic Kidney Disease which was also known as chronic renal insufficiency or chronic renal failure. What horrified me was that this disease doesn’t stop or get better; the best you could expect was to slow it down.

I vividly remember that when I was diagnosed, I blurted, “But my daughter’s getting married!”  I knew it was a very odd reaction to this serious announcement, but now several years later, I think it was my way of saying no to the disease.  My life was just too full, too sweet, too important to me to stop it then. I had actually thought I was being given a death sentence.

That’s what this blog is about. I don’t want anyone else to feel that way.  Yes, your doctor and your nutritionist will help you understand the progression of your CKD and how to deal with it, but I want your path down that road to be a long, long one and understanding what’s happening may help make this happen. After that first outburst, I hid my fears from everyone until I truly understood what was happening to me. It took too long by myself. 

  It’s not that I couldn’t get the help from the nephrologist and nutritionist; it’s that I couldn’t even look at the disease long enough to formulate the questions I needed help answering.  I needed a book to help me, but there just weren’t any available at the time.  I didn’t want a scientific explanation, nor a cookbook, not even a how to live with Chronic Kidney Disease book.  I wanted a book written by someone with the disease who could give me that same information in a way that I could understand while I was frightened, shocked and pretty sad, too.

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Published in: on September 12, 2010 at 2:50 pm  Comments (3)  

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3 CommentsLeave a comment

  1. Howdy,

    I found your blog from your post on http://www.kidneyspace.com. Good idea to post there although this group is not as active since their chat hosting fell apart.

    Good for you if you have already completed your book. A book like this is really needed but the challenge is getting it into the hands of people who need it.

    Like so many CKD people, i was in shock when I learned my disease had progressed to the point where I would need dialysis. And like you my mind and emotions were swimming with new terms, lots of research, my emotions, input from others based on their emotions and experiences, etc. So a book that speaks of hope and gives information that laymen can understand is really needed.

    I’d be happy to help in any way I can time permitting.

    steve
    aka old fool
    Ojai, CA
    transplant Jan 2010

    • Point me toward the right publisher! Alll kidding aside (or was I kidding?), thanks for your comment. I’d like permission to use part of your initial reaction to your initial diagnose in the book if I may.

  2. You may use my comments.

    I don’t have connections with a “real publisher” but maybe a friend does. I will check.

    I have had other friends self-publish and it is easier and cheaper unless you are convinced that your book can compete with the millions of others competing for the attention of a traditional publisher. I can get you resources for self- publishing if you want.

    But like I mentioned if you created a digital version of your book, you could sell it on Amazon immediately. People increasingly buy electronic versions of books to read on their mobile devices. I see people in coffee shops and airports all the time. This is the future of publishing.

    I know how to promote your blog and book online and my friend Kris is a PR consultant. If you want help, let me know. May be free or may be reduced rate for you. Depends on what you want to do.


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