Friday, August 26, 2011

Some Background to Get Things Started

I've debated whether to blog about my kidney disease.  It seems a bit depressing, and I'm not sure if anyone will want to read about it.  I don't want to be a whiner.  I don't want sympathy or pity.  Part of me feels like I need a place to express myself.  I've usually kept personal, hand-written journals.  However, I know how alone I feel sometimes in my struggle with this disease and all that comes with it, and maybe, my words will make someone else feel not so alone.  I have a supportive boyfriend and supportive friends and family members, but no one who can truly relate.

In 2000, I got the first indication that I might have something wrong with my kidneys, when my creatinine level in my blood came back above the normal range.  I'm not a diabetic.  Most kidney disease is found in people with diabetes.  No one is quite sure of the origin of my disease, except for what it's not.  Not diabetes.  Not lupus.  Not PKD.  Etc.

The damage to my kidneys has gradually progressed over time, despite keeping my blood pressure in check and sticking to some dietary restrictions.  It would have progressed more quickly had I not done those things, so I've been told.  Within the last couple of years, I've started to become more symptomatic, and nearing the inevitable, dreaded, dialysis.  In November of 2010, I had my first operation to attempt to create an AV fistula in my forearm, which would serve as the access point for the hemodialysis.  I say "attempt", because it failed, and I had to have another surgery further up my arm at my elbow for the second try.  The second one worked, but it was too deep within my arm for it to be accessed, so I had to have a third surgery to bring it closer to the surface of my arm.  The fistula has to heal and develop before it can be used.  I am finally to the point at which it is possible to use it.  It has taken nine months to get ready physically.  I'm still not ready mentally and emotionally.

A couple of days ago, I had my regular appointment with my nephrologist, and my creatinine (8.9) and other blood work results continue to get worse.  I will be starting dialysis within the next week or two, depending on when the center can get me in the rotation.  I'll be going MWF, for 3-4 hours per visit.  The closest center is about 20 miles one-way from where I live.

I'm nervous about starting this new phase of my life.  I deal with depression and anxiety, and my anxiety is particularly heightened.  I'm trying to maintain a positive outlook.  Hopefully, I'll feel better once I start.  I'm still dreading the phone call to set up my first visit.

Until I come up with some cutesy catchphrase for signing out . . . more later.


  1. Diallison, I love it! So original, always :D

    Miss you lots, Allison. I know this is a tough stage. But you're a strong woman. I have faith in you.

    Love you, and will be following.


  2. Thanks, Chris! I appreciate the encouragement! :)