Problems after PBM..help!

03MGRHJG

I have a PBM on July 24, 2013 because I am BRCA 2 positive. My mom, aunt, and grandmother have all had breast cancer and I have the same gene so there was no question about the mastectomy. My surgery went just as planned and so did my recovery...for the first 7 weeks. When I was 7 weeks out from surgery I started to feel bad...running a temp and having body aches consistent with the flu. Well..when I woke up one morning my right breast was BRIGHT red and hot as fire. My surgeon took one look and said it was infection and he needed to go in, clean, and exchange the expander. He did that and I also went for 2 weeks of IV antibiotics. 3 days off of antibiotics and the same thing happened. So another surgery, this time to remove the expander. Cultures were done and the only thing that was found was Stenotrophomonas maltophilia-which is a very rare infection. About 2 weeks after this ordeal my left breast started slowly turning red and eventually ended up the same bright red as the other one was. I didn't run a fever or feel bad but the breast was defintley having some issues! My surgeon did cultures and sent me to numerous doctors including a dermatologist, rhumetologist, and an infectious disease dr. The cultures this time didn't show much-the infectious disease dr said it showed a little staph but nothing that could be causing this much of an issue. So all 3 of those doctors pretty much told me the same thing, we have no clue!! My plastic surgeon decided to go in on the left side and clean everything and exchange the expander. He had done some research and found that something they use with a mastectomy called Alloderm can cause something called red breast syndrome...sounds strange I know. He removed that when he exchanged the expander. I was also on antibotics for about 15 weeks after the surgery. Everything cleared up and I have been doing great. I had the right expander put back in on the 19th of February and so far so good. I am just SO terrifed at any sign of redness!!! I was told that if it happens again, I will be sent to either Duke University or Charleston to see if anyone there can help. I am just wondering if anyone else has experienced any problems like this. I have done some research and can't find ANYTHING!! I feel so alone and have no one to talk to. My mom and aunt have both had double mastectomies but neither have had these issues. Can anyone out there relate? This has caused so many problems from work, family and marriage. I can't even enjoy the fact that I no longer have the worry of breast cancer because I can't get thru the reconstruction process!!!