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Umm, how odd Dr Mac wouldn't see you. Only possibility is he was swamped with research and patients for the time being. He has always appealed (in a suble way to those patients he knows personally) for patient referrals to keep his dedicated PNH Clinic going but especially those who will sign up for his long term PNH patient data study. patient characteristics, history, meds and long term outcomes.
Yes, Dr Young is the best. Appointments through Olga, last info I have, 301-496-4462. I'm afraid platelets of 20 are too low for anticoagulants. However if you don't often have dark urine (probably smaller clone size) your risk for clots may be reasonably low. Many PNH/AA patients never have visible hemolysis or it is pretty mild. Drink tons of water to clear your liver in any case. Hemolysis is going on even when you don't see it.
Great to find a buddy here, let's keep in touch now and then.
suz
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AA/PNH Dx 1998, Warfarin, Soliris
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