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I was on kalydeco which was approved for one of my genes but switched to Symdeko off label and vertex took me off their co pay assistance. However, they allowed me to go back on a few months later. It is in their best interest that you can stay on it so I would call and ask!

I am deeply sorry for the loss of your sister. I too lost a sister to CF and know how painful it is. I also have CF and could definitely use the Symdeko as my insurance company is not willing to cover it for me. I would gladly pay you to ship it. PM me if that would work for you. Thank you!

I am deeply sorry for the loss of your sister. I lost my sister to CF over 20 years ago and it is still painful. I also have CF and could use the Symdeko. I would be happy to pay you to ship it. Thank you!

I agree also. Drinking (particularly in excess) will suppress your immune system. It only takes one severe infection or illness to take a big chunk out of your lung function. Additionally the liver issues could be very harmful.

Are you still taking Lovenox? It can cause leg swelling. I saw you have a history of a pulmonary embolism? I wonder if a cardiac and lower extremity ultrasound is warranted? It's hard to know if the leg swelling and fevers are connected or two separate issues. The fevers are common with...

Hi Jaimers, thank you for doing some investigative work. I appreciate all the helpful information.

Has anyone on this forum seen this doctor at John's Hopkins and if so do you like him? Thank you!

Thank you Bill.

Hi jaimers, thank you for the information. It sounds like mgh is getting back on track which is great news!

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...

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?

Good to know about the FB group. Thank you very much!

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...

Hi lynnfield mom, thank you for the update on the mgh clinic. Their website was not updated at all. This is so helpful.

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...

Hi Bill, I currently go to Childrens. The doctor I see does not have a lot of experience with cf. She is part time cf and part time general pulmonology. I saw the chief when I moved back from Chicago in 2007 but he got angry (and hurt...his words) when I wanted to switch to Dr. Uluer. He...

Does anyone go to mass general on this forum? I heard that Dr. Sicilian was part time now (? retiring soon) and they laid of a nurse practitioner. Are the doctors good there and if so which ones?

I have one. I got it 4 months ago but I do not use it as I do not think it works as well as my incourage vest. Disappointing as it is more portable and more pleasant to use (quieter, not attached to anything). I really wish it worked better. The PT at Boston Childrens told me it works for...

Dear Lexi, I have tears running down my face thinking of the pain and turmoil you are facing. There is no easy answer here. I can only share my story. I am 40 years old with CF. I have one mutation similar to delta f508 and another one g551d. I am pancreatic insufficient. I have 2 children...

Just realized I mixed up their numbers. Matt is the 7000 number. Sorry!