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My Husband Has Wild Type ATTR CM, I Would Love To Know What Amyloidosis Center Or Dr, You Have Seen. It’s So Hard To Find One!

A MyAmyloidosisTeam Member asked a question 💭
Maumelle, AR
September 22, 2023
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A MyAmyloidosisTeam Member

Not knowing where you live, I will just comment on how I established my team of doctors. Once my family doctor realized that I had a problem, he linked me to a lung doctor and a liver doctor. Lung doc had me scheduled out about 2 months, until family doc stepped and persuaded lung doc to see me soon. (Family doc was treating lung doc's children.) Then perhaps a month later he linked me to a kidney doc and a blood/cancer doc. At this point there was no diagnosis. Kidney doc ordered a kidney biopsy where my AL amyloidosis was discovered. Then with such discovery, blood/cancer doctor linked me to a doctor/friend specializing in amyloidosis at Emory - Atlanta who then directed my program. Most difficult was finding a heart doctor (cardiologist) specializing in amyloidosis--found a couple but their schedule was full. Two months later we (my wife) found a heart doc who specialized in amyloidosis, completing my doctor team.
Timing, all this year (2023): discovered AL amyloidosis early January, met with Emory doctor about a week later (some strings were pulled for this), started chem treatments end of January.
Family doc, lung doc, kidney doc, blood/cancer doc all in my home town of Carrollton, Ga. Heart/amyloidosis doc in neighboring town. And fortunately for me, infusion center where I received my chemotherapy treatments is about 15 minutes from my home. (My apologies for not using appropriate titles for my doctors.)
The quick scheduling was primarily thanks to a cycling friend with stage 4 lung cancer who has gotten to know and is friends with top docs at Emory--he passed my 'scheduling plight' on to his doc friends and I had an appointment within a week with the Emory doctor who is now directing my program. vern

October 13, 2023
A MyAmyloidosisTeam Member

I am being treated by Dr. Stella Yala at UCDavis Health Center in Sacramento and feel very well cared for. If I lived near Stanford I'd go there. Same for Mayo Clinic and Boston U. Look for Amyloid Centers of Excellence. I hope that this isn't too much or too little. I can't tell. joel

September 22, 2023
A MyAmyloidosisTeam Member

Where are you located? Perhaps someone in or near your area can direct you to centre that specializes in Amyloidosis.

September 22, 2023
A MyAmyloidosisTeam Member

I am the University of Pennsylvania Amyloidosis Center. I see Dr. Piretti. She and her staff are amazing

October 12, 2023
A MyAmyloidosisTeam Member

Ask your cardiologist.

October 11, 2023

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