My AA Story

Cristina Arroyo

Back in 2015, I went to see my Primary Care Manager several times because of fatigue and feeling feverish (when I didn’t have a fever). My muscles and bones were hurting.  I was also retaining water, my feet and ankles were huge.  I switched PCM’s around September of 2015 and told her what was going on, how I felt tired all the time, etc. 

She took the time and ran tests. I received a call from a nephrology doctor saying that my PCM had referred me to her and she needed to see me ASAP (I go to military hospitals).  I went and she explained to me that my kidneys were failing but she didn’t know why.  I am not diabetic, so that was ruled out, I have high blood pressure, but under control. 

So finally, in December of 2015, I had a kidney biopsy and it came positive for AA amyloidosis.  My kidneys were declining. I went to the Mayo Clinic in Jacksonville, Florida and saw a specialist in amyloidosis.  I did genetic testing and it came negative for Familial Mediterranean Fever. I have gone every year since, to see the specialist.  I also see a rheumatologist and he put me in colchicine (even that I tested negative for Familial Mediterranean Fever) to see if it would work.  My kidneys at this time were functioning at about 18%. After a month taking colchicine, my kidney function went to 25%. I have been taking this medication for over a year and I am now at 32%!!  I even feel better, however, I am still retaining water. 

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Localized Amyloidosis
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Carolyn Foulston’s Video Message to Physicians
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As a nurse for 18 years, I had never heard of amyloidosis
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Amyloidosis “Rock Star”
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Amyloidosis Brought My Family Together
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My Battle with AL amyloidosis
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Making a Difference
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Beyond Imagination
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