- CASE FILE
My husband was diagnosed with a rare disease called AL Amyloidosis in 12/2018. HELP!
ABOUT THIS CASE FILE
in December of 2018 my husband was diagnosed with AL Amyloidosis ( This is a rare disease that forms bad proteins from the bone marrow and attacks the organs) -Edema, Shortness of breath on slight movement, low blood pressure, severe w...
in December of 2018 my husband was diagnosed with AL Amyloidosis ( This is a rare disease that forms bad proteins from the bone marrow and attacks the organs) -Edema, Shortness of breath on slight movement, low blood pressure, severe weight loss, fatigue, weakness keeping my husband almost in bed completely. 16 months ago we were hiking, traveling, sky-diving, gardening and now he is lucky to make it to the bathroom with a seated walker. Amyloidosis is measured by "light chain" numbers and although his numbers show good he continues to decline. I have taken him to 3 hospitals including Mayo in MN and no one can give me an answer as to why he is declining. Are they missing something? I have also been told he has a Diagnosis of ringed sideroblasts but no one will treat this. I am a Nurse and we are so lost. The amyloid makes a bad protein that attacks the organs and we do know it is effecting his kidneys, heart, and possibly the nervous system. I have watched my loving, active husband change in to a bed ridden man who can hardly pull himself up in bed. Doctors had first wanted to do a autologous stem cell transplant but they he is too weak. He has been treated with chemo and now they are looking at starting a new chemo. This also confuses me. If his "light Chain" numbers are good why do we need to continue chemo? He was healthy and this changed our lives. We are begging for help!