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    08-09-2017, 10:34 AM
    scanboyd: It is great hearing that you are doing so well. Bill
    5 replies | 993 view(s)
  • Printer's Avatar
    07-31-2017, 08:39 AM
    Printer replied to a thread Mucus in urine in Families
    LM Please reread my last post. I said nothing regarding urine. I am also impressed by your superior knowledge regarding CF. The researchers...
    12 replies | 2045 view(s)
  • Printer's Avatar
    07-29-2017, 02:45 PM
    Printer replied to a thread Mucus in urine in Families
    Lynnfield Mom I was dx in 1987, 2 years prior to the gene being discovered. CF 101 was much different then. If you have followed my posts here...
    12 replies | 2045 view(s)
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10 Visitor Messages

  1. I sent an email to a friend, an RN who has been in the CF clinic since prior to 2001, and asked her for her input. When I left MGH for BCH, I felt line a baseball player being promoted from the minors to the big leagues. I hope that MGH is better now. I wish that more people who had experience with both clinics would have posted.
  2. View Conversation
    Thank you Bill.
  3. Good luck in whatever you decide.
  4. View Conversation
    Hi Bill, I had a great relationship with Craig also and I think that is why he was so offended. I did not realize he was going to take the transfer so hard. I felt our doctor patient relationship would never be repairable. I really appreciate your advice and guidance. I noticed your age...you are an inspiration. Stay well!
  5. I see Uluer when I'm in the hospital. He was also in charge of a video shoot and asked me to join in. This led to my speaking to a group of lung specialists at BWH. He is a great CF Doctor and a great person. I have seen Manuela at BWH for the most part but I have seen her when I needed a non scheduled appointment.
  6. I see Craig Gerard and I have a great relationship with him. I stopped going to MGH because I had "communication" issues with Dr Sicillian. Dr Dorkin and I became friendly when he was at MGH. I would suggest that you chat with Hank Dorkin and see if he will help you. Personally, I doubt that MGH is your answer.
  7. View Conversation
    Sorry...just saw you mention Craig. Do you also see Uluer sometimes? I saw you mention him in a previous post. How often have you seen Manuela?
  8. View Conversation
    Who do you see Bill? I like Dr. Cernadas too but I do not think she has the depth of knowledge like Uluer. She also does not use email regularly and does not get back to you a lot which is frustrating (I do not reach out that often). I really like her as a person and at times she steps to the plate. I will feel terrible leaving her. A couple years ago I started developing low grade fevers and she kept saying I don't think it's related to your cf. I was miserable. I saw other specialists to see why it was happening. I finally reached out to my old doctor (Dorkin) who said, it's your cf. He was right. I appreciate the offer to talk to Gerard but I really don't think it will help.
  9. Actually, I like her, if Craig were to retire, I would really consider seeing Manuela. I'm not crazy about Donahue. I doubt that you would be happy at MGH. I will speak to Craig Gerard, for you, if you like.
  10. View Conversation
    Hi Printer, Sorry for the delay. I am currently seeing Dr. Manuela Cernadas. She was the only doctor he would allow me to see. I like her but do not think she has the experience I need. The last couple years my health has become a bit more unstable....I am turning 42 in a month. Do you have experience with Dr. Cernadas? My email is [email protected] if that is easier. Also my phone number is 617-869-3504. I am curious to hear your thoughts.
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About Printer

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Male 77 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5T. 100% PI. MAC, CFRD.

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