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Our Mayo Dr. explained that amyloidosis attacks on 2
fronts--organs and blood.
Does anyone know more about this???? My husband 's bloodwork is still ok, but we are afraid his organ involvement is growing. Is one better than the other?? I haven't read much about this. You would think one would reflect the other.....
Wouldn't eventually it show up in the lite chain tests,etc..??
My husband was told at the Mayo Clinic in January 2007 that he has Primary Amyloidosis. He was also told that, if he were much younger, he would be given chemo and then, if he survived that, he would be treated for the amyloidosis. He was 75 years old then and was sent home to be treated by his own very good cardiologist. The amyloid has deposited in his heart muscle causing congestive heart, shortness of breath and now swelling of the abdomen and ankles.
They do blood testing every-so-often to see how his kidneys are doing and his meds have been changed often. He is also on Coumadin (warfarin) and has testing for that level at least once a month. His physical abilities are much curtailed and he is usually tired and chilly. The last time we visited his cardiologist he talked about dialysis, but that's all.
He has a good GP and urologist who stay in touch with the cardiologist, also. We feel blessed to have this good care and we thank God for His guidance and help one day at a time.
He naps easily in his recliner. He is diabetic and has sleep apnea. He sleeps on a wedge pillow with a CPAP machine to help his breathing. If any of you know something that might help him, please do let us know. We don't know anyone who has his condition and he feels like noone really understands.
See our website www.amyloidosissupport.com and see the animation on the top right of the first page.
Also e-mail me muriel@finkelsupply.com for more help
Muriel
Muriel Finkel
AMYLOIDOSIS SUPPORT GROUPS
ASG www.amyloidosissupport.com
Toll Free 866-404-7539
National Organization Member of NORD
www.rarediseases.org
www.amyloidosisonline.com - Over 710 have joined
"Don't Take Your Organs To Heaven, Heaven Knows We Need Them Here"
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