Sunday, September 30, 2012

January 2010 - Blood cancer?

The first time I heard the word "amyloidosis" was in January of 2010, when my mother called me after an appointment with her nephrologist. Mom said she had something like a cancer of the blood, and it was called "amyloidosis." I had her spell it for me so I could write it down and research it later, and I remember thinking how ironic (and handy) it was that each part of the word (amy-loi-dosis) started with the same first letter as the names of each of her three children (Amy, Laura, David). So now it's time to hit the Internet and find out what this "amyloidosis" disease is. But first let me back up a little and explain how we got here in January of 2010.

My mother had been seeing a nephrologist for quite awhile to figure out what was going on with her. I wasn't really following too closely before 2010, but I got the impression there was something they were having a hard time diagnosing. She seemed fine as far as I could tell, given her age and health history. I remember she was seeing her internist and nephrologist frequently, but the only outward symptom I can recall now was at some point in 2009 she started bruising very easily. On several occasions she would suddenly notice a large, badly bruised spot on her skin (usually hand or arm) and she would have no recollection of how it got there. Her nephrologist (Dr. V) wanted to do a kidney biopsy, but she (Dr. V) didn't want to do it until this bruising was figured out.

I guess the bruising slowed down enough to where Dr. V was comfortable doing a kidney biopsy, and Mom had that done on December 28, 2009. The appointment to go over the kidney biopsy results in January of 2010 was when Mom first heard she had amyloidosis. The next post will be the results of the kidney biopsy, so get ready for some medical terminology.

(Edited January 8, 2013: Added children's names.)

Saturday, September 29, 2012

First Post - Welcome

Hello world. Welcome to my first blog post on this Fibrinogen Amyloidosis blog. I'm writing this blog for two main reasons. The first reason is to chronicle my family's journey with fibrinogen amyloidosis. The second reason, which was what really prompted me to seriously consider starting this blog almost about a year ago, is to serve as a centralized point for keeping links to all the articles on fibrinogen amyloidosis as I come across them, which will make it easier for others to get that information. Other reasons do come to mind now, and I'm sure more will evolve over time, but I've put this off long enough so it's time to just do it. But first . . .

I'm writing these first blog entries in September of 2012, which is over two years after our journey began. So until I catch up, the posts will all be written in hindsight, and I'll be going off memory and old emails to put the story together. Some details and events will certainly be missed as a result, but there shouldn't be any major gaps. I plan on putting a date in the title of each post so the reader will know when it occurred. Eventually I'll catch up and that won't be necessary. Until then, of course, you're reading ancient history.

My name is David Jennings, and most of you reading this blog in 2012 probably know me in one way or another anyway, so there's no point in keeping my name a secret. As far as other people are concerned, I plan on just using first names and/or initials when referring to others in this blog, unless someone specifically requests something else.

So here we go . . .