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Mike: I am seen at Boston Children's for my CF but I see Steve for my Gastro issues that are CF related. Look into the train to Boston. The Back Bay Station is a short cab ride from BIDMC and you can do the round trip in the same (long) day. Steve only sees patients on Friday's, so you could...

Mike: Don't be afraid to see Steve Freedman, even once. He will put a plan together for you that your CF Specialist can follow. Wait until the Spring, we have much to much snow for a trip here now. Bill

Mike: I was dx at age 47 after years of digestive issues. Two comments, now that you have been dx your entire life will improve. The other thing is that you must be seen at an Approved Cystic Fibrosis Clinic by a Cystic Fibrosis specialist. Your current Doctor can treat you for everything...

Too much is exceeding the amount that the Doctor told you to take.

Dank: CF is treated in every other country as it is in the USA. You may as well stay where you are and just remain "non-compliant" here. Continue to refuse medications and let us know how that works out for you. Bill

Enzo: I don't see why any employer wouldn't want to give you everything that you require. It is not like you would be easy to replace. Stand up for your rights and give him a copy of the ADA. Bill

Did you contact Boston Children's Hospital/Brigham and Woman"s Hospital? Children's has over 1600 CF patients of which more than 50% are over 18.

It seems to me that if your Doctor ordered it, you should be having this discussion with him/her. Bill

Enzo: One day, perhaps, the world will adjust to your way of thinking. Until then, it would be better for you if you would just accept the world as it is. Bill

believingjesus: If you want to beat yourself for no reason, help yourself. The fact is that you, and your husband, did nothing different in producing your "healthy" son than you did in producing the son with CF. It was "divine intervention" that chose the genes that your sons were given, you...

Believinginjesus: You didn't give your son CF, any more than my parents "gave me CF". My milder mutation is very rare and has been traced back to seven families in Northern Ireland. My 4th Great Grand Father left Northern Ireland in about 1820. I suppose that I could blame him but he too was...

Would someone help me out here. Exactly is "support"?. Is it always telling a CF parent that they are correct? Are CF parents ever wrong and if they are do we "support what it is that they are doing? Is it giving the best advice available, based on life experience? Is it OK to tell someone...

For example. The Massachusetts General Hospital has more than 2500 Doctors on staff. MGH is an Approved Cystic Fibrosis Center. MGH has less than 10 CF Specialists. You need to go to an APPROVED CF CENTER and see a CF SPECIALIST. Bill

There a number of different CFRT test levels. There are almost 2000 known mutations, any two mutations will cause CF, and some tests only scan for 250 mutations, you do the math. You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST. Ask your PCP for a...

Even at my age, my Doctor yells at me for not calling him when "something" is doing on. If you think that you should call, then call. Bill

I do not own my vest. Like yours it is a 105 system but it is on lease and paid for by my health insurance. Whenever I stop using it, it must be returned to Hill-Rom. Before you sell it, be certain about "ownership". Bill

Jeannie85: I am not the oldest CF Patient. There is a women out here who is 76 and someone in the CFF Register in the mid 80's. Bill

I would call his CF Doctor or go to the ER and have it checked out. Bill

Like your daughter, I have Delta F508 and another milder/rare mutation. I will be 75 in January and have been married for more than 50 years. I have a college education. I played varsity basketball (poorly but I played) in college. I was a lifeguard for 5 years on an Atlantic Ocean Beach...

Mrs. Believingjesus: You should contact Senators Pat Roberts and Jerry Moran to get new legislation moving to overturn this major flaw. God bless you, Bill