What Advice Are You Grateful To Share With Others About Amyloidosis?
As I stated in my bio, I am a survivor of sarcoidosis, cancer, covid pneumonia and now Amyloidosis. After each diagnosis I said to myself, "what on earth is it now Lord?" I've had two rare issues that had be wondering, why me? First and most important find a good physician, which I was fortunate enough to find almost every time. For cancer Sloan Kettering in NYC was at the top of my list and I was not disappointed. Sarcoidosis found a pulmonary specialist that had treated many cases and knew exactly what to do in my case. So glad I found this physician because the first pulmonologist started treating me for chronic asthma. Needless to say, I was getting worse. Covid in 2020 all I can say is: I had a team of wonderful doctors attending my case, I was physically in good shape and most important I had the love and prayers of the entire staff being I worked in that hospital. At home my family's encouragement, support and love kept me going. Amyloidosis I was told was another rare condition. It was found on my left eyelid and populated on other tissue around the socket of my eye. I had no symptoms and no issues with the eye other than cataracts. The scary thing is, I have no idea how long it had been there and if it had spread. How was it found? While undergoing a brow lift to improve my vision, it was discovered as my lids were being inverted. The surgeon stopped the procedure, took biopsies and pictures as well. I am now being followed by a hematologist/oncologist, cardiologist and ophthalmologist. After all kinds of test to include a bone marrow biopsy, the amyloidosis was found to be localized. Good Physicians and a positive attitude go a long way and prayer!
Review your own blood test and any other results. If I hadn't, I would not have been diagnosed, and treatment delayed. Research best treatments and ask questions if those best treatments are not available to you. Take action if necessary. If you are not well enough to stay on top of it, find a focused, dedicated advocate who will.
Not true. There are quite a few Hospitals nationwide that specialize in Amyloidosis. Northwestern University Hospital. Chicago; University of Pennsylvania Philadelphia, Brigham and Women's Hospital Boston. Columbia Presbyterian Hospital, New York City, Johns Hopkins Hospital Baltimore, Mayo Jacksonville, University of Texas Southwestern, Dallas, University of Colrado School of Medicine Aurora Colorado, and more.
There are at least 12 Amyloidosis Centers of Excellence.
Find a cardiologist who specializes in amyloidosis and works in a collaborative, team environment.
Do as much research as you can so you know what questions to ask the doctors, but use only research done in the past couple of years. So much has changed and prior to 2022, the research is scary.
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