← Return to Diagnosed with AL Amyloidosis. What can I expect?

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@nick0820

Thank you Ginger! I am surprisingly feeling very well at this time! I continue to go through normal daily activities such as work, travel - really no majors changes to my life at this time. I may get a little more tired than normal SOME days however for the most part there have been no drastic changes to my life on a whole. Even going through the Chemo treatments - I still feel very well!! In fact, I feel great!! I expect to be going through the preliminary testing for the SCT within the next 2-3 weeks. My local oncologists are hoping to have the procedure completed sometime in August 2019 - so I can be on the road to recovery during the Fall months. My goal is to be well enough to have a wonderful Christmas with my family!! I have learned a lot of great information on this site - I hope to continue to share my experiences with this rare - hard to diagnose - disease. Thank you so much Ginger!!

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Replies to "Thank you Ginger! I am surprisingly feeling very well at this time! I continue to go..."

@nick0820 Please keep us in the loop of communication! It's great you are not letting this get you down, and We're with you, hoping for a good holiday season with your family. In 2015, when I was diagnosed with an ultra-rare kidney disease, the renal pathologist had said it might be amyloidosis, but until they had the last puzzle pieces from the kidney biopsy, they weren't sure. He knew it would be easier to treat that than what the final diagnosis was.
Ginger

Hi @nick0820, I want to add my welcome.
You may be interested in this video by Mayo Clinic experts. Martha Grogan is a leading specialist in amyloidosis
+ Video Q&A about Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

I appreciate your willingness to continue sharing about your journey. Don't hesitate to ask questions too.