As I write, the good news is the improvement of Bruce Hoefling, whose crises caused by PKD have caused several hospitalizations due to burst and bleeding cysts, removal of both kidneys, a difficult time with dialysis and now many days in ICU due to undiagnosed seizures. Amy has been faithful in keeping her blog up to date. Link it up and keep them in your prayers.
pkdsucks 9/22 It's Getting Better
To return to my story, after the left kidney was removed, life slowly returned to normal and my PKD, unlike Bruce Hoefling's, receded into the background. High blood pressure and occasional swelling of the ankles were the biggest medical issues. Of much more importance were unforeseen job changes which led me out of the packaging industry into first rock and roll memorabilia and then the wine business. (That was a nice change!) Our sons were finishing high school and heading to college and Susan and I were adjusting to the prospect of the empty nest. I was happy to stick my head in the sand and believe that my diseased kidney would somehow keep on doing its thing and life would just go on. Yeah, I know. Just me being stubbornly stupid again. (Why did I have to be so good at that???)
The next problem was aggravation of the swollen ankles. I somehow strained my Achilles tendon. I think it was at a wine tasting at a friend's house. I had a glass in my hand of a hard-to-find Pinot Noir when I unknowingly stepped down into his sunken living room. I stumbled, stayed upright and, most importantly, didn't spill a drop! The tendon started aching the next morning and the pain didn't go away. Selling wine retail is not a job you can do sitting down and I worked in a very large store. That didn't help the healing either. In fact as I tried to ignore the pain and kept working over the next couple of months, the pain just kept getting worse.
It was the day after Father's day. My sons were in town and we were going with my dad on a barbecue excursion to Central Texas to celebrate when the pain finally became too intense. I bailed on the trip and asked Susan to call a doctor. Yep, tendonitis of the Achilles. I found myself on pain meds in an easy chair with my lower leg in a walking boot. The problem was, the ankle wouldn't heal. The swelling, due to progressive kidney failure, kept aggravating the damaged tendon. The other side effect of kidney failure is fatigue. I was continually exhausted dragging around a bum ankle in a walking boot.
Was I seeing a nephrologist? NO.
Did I connect any of this to kidney failure? NO.
Did I acknowledge the possibility of dialysis or transplant? NO.
Stubborn Stupidity was the rule of the day.
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I am catching up on your story and just wanted to tell you that I am so glad you decided to write about it. I started reading the first few posts but then as you know, life got complicated here. I have told my husband to read your blog because he will really relate to the denial. We were never told that his foot and knee problems were a sign of his kidneys failing. Only years later after seeing the good Nephrologist did we get a clear picture of all that was happening. I don't know if I ever posted this but Bruce was also treated like he couldn't be trusted in the hospital when his cyst burst and he almost bled to death. He, like you, continued to work and push on until collapsing. He did tell the doctor, but he fails to give details or ever act like there is anything really wrong so he often gets things overlooked.
ReplyDeletethanks for sharing your story. i'll be reading!