I always try to figure out what would be good to post for this blog. This past month I came across two great videos from England on the treatment of AL Amyloidosis from the National Amyloidosis Centre at the Royal Free Hospital in London. The videos describe what AL Amyloidosis is, how rare the disease is in the English population and some new treatments. I found some of the treatments interesting as I am getting ready to go in for a second bone marrow or stem cell transplant. I am always hearing about new drugs from the doctors that are being developed and have not been cleared by the Food and Drug Administration in this country. Something encouraging I heard from one of the videos was that nerve damage from amyloidosis is reversible and can be gone in less than 6 months after treatment. I have this persistent numbness in my feet and left hand. It would be very nice to have this disappear and to have all my feeling and muscle movement restored.
The first video interviews a Dr. Gillmore on the disease.
The second video interviews Dr. Ashutosh on new treatment for the diseases.
Both videos are about five minutes in length.
On a health front, we have submitted an appeal to our insurance for financial coverage of a a second stem cell transplant (SCT). The letters were sent last week. If the request is viewed as an urgent need, then we will have a response by Friday. If the appeal is not seen as urgent, then the review will take a month. The hesitation to fund a second SCT has put my treatment basically on hold. It is important that the amyloid does not cause any further damage to my body, especially the new heart that has worked out so great for me.
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