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E
Oh I am so sorry! I never was notified that you messaged me. We have a CRMS group on Facebook if you are interested?

Honestly it gets better! It's hard in the beginning because you are always looking for signs but eventually it becomes a new normal and it's not as overwhelming. You really should come to the Facebook group! We have over a hundred members who have a child(ren) with CRMS! https://www.facebook.com/groups/CysticFibrosisCRMS/
M
4005+2T->c splice mutation with residual function, PS and the second is an X-mutation. Wanting to try Kalydeco for my rarest mutation.
D
شما می توانید برای تهیه ی عایق صوتی به ما سر بزنید و مشاوره بگیرید
J
Hello! Per your question, my baby has Delta 508 an Y 101c4. I'm so terribly scare re crms still. Do you have any advice? Every time I kiss him I think he's so incredibly salty and now has cf. I'm afraid of water, taking him around other babies etc. If you have any insight, it would be much appreciated.
C
I have found that if I did that with Wellness Supplement that I would get more out of Wellness Supplement Review. Professional people seem to like that fact regarding the gain because there are events to allow for when getting doing this. Here's a building block. If you have chosen to choose doing this, no need to be worried of insults. The most basic it is designed to make that proverb readily available to the general public at low cost. I don't know what it is this specifically makes this contrivance like that.

You are OK for Wellness Supplement.



http://wellnesssupplement.com/
P
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.
M
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!
P
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.
P
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.
M
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?
M
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.
P
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.
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