Hi Loretta,
MD Anderson is certaining one of the best centers in the nation. In addition to my local AA specialist at University of Chicago I see Dr David Araten at New York University. He trained under one of the top 2 or 3 PNH specs in the world, Dr Lucio Luzzatto. If I need ATG in the future I'll have him do it. Dr Maciejewski at Cleveland Clinic is excellent too.
Loretta, it is vital you learn your clone size as that shows the degree of risk you have for developing life threatening clots. Most of us PNH patients are on aniti-coagulant unless the clone size is small or the platelets are too low.
Check the complete PNH Specialist List and contact info at
www.pnhdisease.org - 600+ PNH members!! It's another great support groupforum, also with several members associated with the Aplastic Anemia and MDS Foundation. Two of our support members are on AAMDSIF Board m Many of us have AA as well, a few have MDS. PNH will be featured on Mystery Diagnosis Dec 3rd!! See site above.
Maybe someone there will give useful comment on high potassium.
Wishing you well,
suz