Friday, November 22, 2013

114 Days

It has been 114 days since I first heard the word "amyloidosis." I don't remember much about the phone call from my nephrologist on July 31 -- other than she sounded like someone just died. And she said that she was sorry. I had her spell amyloidosis for me, and I jotted it down, but for the most part I was extremely confused.

August and September were somewhat of a blur. I was referred to hematology. Had a bone marrow biopsy. Heart tests. A fat pad biopsy. Blood and urine tests. I went to Mayo. Old tissue samples were stained. It has been 114 days of worrying and waiting that has all led to this:

Today my hematology team broke up with me. And they didn't even pull a George Costanza ("it's not you; it's me"). Nope. Instead they told me it was because of ME -- or more specifically -- because they can't find evidence of amyloidosis in me. I received an email that read, in part, that "we are very confident in our assessment that you do not have amyloidosis." They do not feel that I need any follow up in the hematology clinic. They did, however, recommend that one of my other doctors check for abnormal proteins once a year.

As far as hematology is concerned, amyloidosis is off the table. While this is a great relief, amyloidosis will always be my Boogie Man. It will be the shadowy figure lurking in the dark. And I'm not sure I will ever completely let my guard down -- especially knowing that my proteins will continue to be monitored.

So where do we go from here? I see the liver doctor on Jan. 3 so that he can weigh in on my liver issues, and then I see my nephrologist on Jan. 13. I'm guessing that the diagnosis will be fibrillary glomerulonephritis and that we will finally discuss a treatment plan (Rituximab infusions) in greater detail.  



  1. Well, it's not you, it's them.

  2. All those nice t-shirts that you now can't use. HOORAY!!!

  3. Break ups used to be a "Dear John" letter, now it is an email.....not even hand written! Praying that hematology is right, like you looking over my shoulder will be done a lot.
    Stay strong!!