Sunday, November 18, 2012

Patient Timelines Page Added

More than once I have thought of how handy it would be to have one place to look for a concise timeline of Mom's history with fibrinogen amyloidosis, instead of having to read through a zillion blog posts, go through her copies of lab reports and whatever other medical records she has, or rely on my less than perfect memory. Blog posts (entertaining as they are) and medical records (dry and boring as they are) both tend to have a lot of extra stuff and sometimes, to borrow a phrase from Sgt. Joe Friday, "all we want are the facts, ma'am."

So to that end I have added a new page to the blog, called "Fibrinogen Amyloidosis Patient Timelines." You can get to it from the right side of any page on the blog, under the "Pages" heading. The direct link is:

There is still plenty I want to add to Mom's timeline, such as when we think the first symptoms appeared, and her creatinine, GFR, and protein numbers that we have records of. So that will be added over time. Email and RSS subscribers will thankfully not be automatically notified of updates to the Timelines page, but I'll mention any significant updates in future blog posts.

Here is the entire Timelines page so far, for your perusal and feedback:

This page will be used to document the major milestones of each person's journey with fibrinogen amyloidosis. In addition to being a handy place to record this information and update it over time, hopefully this page can be of benefit to anyone who comes across this page so they can see some examples of the progression of this disease.

I'm not limiting this page to members of my family, so if you have the fibrinogen mutation and want some of your information included here, please send me an email (toe at juno dot com). I'll identify you however you wish, whether that's full name, first name only, initials, a pseudonym, a number, or whatever.

Improvement suggestions are welcome.

(This page initially created November 17, 2012)

Linda J. (DOB July 1941)

(Added to page November 17, 2012)

2008 - 2009: Seeing a nephrologist to determine cause of proteinuria and elevated creatinine level.

2010, January: Kidney biopsy shows presence of amyloidosis, but unable to positively determine type.

2010, March: Bone marrow biopsy shows no sign of amyloidosis.

2010, June: Evaluated at Boston University Amyloidosis Center. AL and AA amyloidosis ruled out. Familial suspected, but not ATTR.

2010, July: Genetic testing shows Fibrinogen E526V mutation.

(Last updated November 17, 2012. Waiting for blog to catch up before adding more.)

David J. (DOB July 1962) (Son of Linda J.)

(Added to page November 17, 2012)

2010, October: No proteinuria. Creatinine level normal. 

2011, February: Genetic testing shows Fibrinogen E526V mutation.
(Last updated November 17, 2012. Waiting for blog to catch up before adding more.)

Next up: Sources of information on fibrinogen amyloidosis

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