Hi Lynn,
I'm sorry you were diagnosed with PNH. PNH is highly variable, it is said that no two patients are alike. The clone may stay same for a very long time and may not get bigger. It may though. That's why PNH specialists recommend a flow cytometry repeat periodically. The most important advice I can give you, and I want to stress the importance of this, is to see a PNH specialist. You may not need any treatment but the specialist can educate you more on PNH and let you know what to do should you develop certain symptoms and what symptoms to look for. Then the local hematologist and the PNH spec can work together in managing your care.
What state are you in, I'd be happy to give you some expert's names if you like. Marc listed some in a PNH forum post, you may want to see his post as well. You can also contact the AA & MDS Fdn for a contact list,
www.aamds.org
Suz