The past week has been very difficult. I have had little motivation to do anything. I haven't been on my computer for four days. Every day I would wake up, eat a small breakfast, take my medications and go back to bed. I am completely wiped out all of the time. I have had to stay home and not work. Emotionally, Barbie and I are spent. If this is only caused by a virus, then I should improve. But if the bowel problems are from amyloidosis, I may never get better. You can imagine what that feels like when the proximity of death is so palpable.
Everyday I eat and drink as much as I can tolerate; this means a constant consumption of very small amounts of food and liquid. I am maintaining my weight so far.
Today, I have had some good moments. I had to give a lunch lecture in Rancho Cordova to a group of Primary Care Physicians. Mostly I answered questions about urologic issues and cases. However, at the end I presented a case which, in essence, were all of my symptoms and findings before I was diagnosed. Finally, from one corner of the room I heard 'amyloidsosis'. I was quite pleased that someone thought of it. The physician told me after that he once had cared for a patient with renal amyloidosis. At least the other doctors will think of it in the future.
I am hopeful. I will start Revlimid this weekend which did seem to work last fall to treat my amyloidosis.
I'm sorry you are not feeling well. That must "feel" awful.
I think it's totally awesome that you could spread the word of amyloidosis. I think you are an amazing man with so many talents. Thank you for sharing your daily happenings on your blog. I'm an avid reader.
Kevin-thanks for the update, you are the man! The fact that you are lecturing right now is such a great example to me. Lance could take lessons from you. Get well soon!
Hi Dr. Anderson - I don't know you personally, but I work in pathology in "your" hospital. I frequently talk with your MA, who brings me the daily bag of "treats" from Urology. Know that my prayers and thoughts are with you and your family. Your story is inspiring, your battle is difficult, and just know there are many, many folks praying for you and your family. Keep on bloggin'....it's amazing!
You are in my prayers. May God guide the hands and minds of those that will heal you.
Your quiet strength shouts volumes about your character. I've written in this forum before as an amyloidosis patient.. you are helping me see the path I must walk during the next few months / years. God has blessed me with the gift your continuing blog of your experiences with this horrible disease. Thank you again and again for sharing although you just don't feel like doing anything. I understand. You are a hero in my books. God be with you and Barbie always,
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