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When you get your appt with Dana, I would call the Adult CF Clinic at BCH to get a 2nd opinion there also. There is a bridge connecting the two buildings. Let me know if you need any City of Boston info or if there is anything that I can do to help. Bill

That dose tells me that you are not seeing a CF Specialist. You need to see a CF Specialist, I sent you the name of the Adult CF Clinic at Columbia Univ. STOP seeing local Doctors

What is her history of her FEV1's. Is there a serious decline over time?

What is the dose and frequency of the Cepro that you are taking now?

While I honestly believe that my Father had CF (2 milder mutations) he was never diagnosed. He was diagnosed with lung cancer at age 45, he was diagnosed with TB at ages 49, 52 and 59. Yes he had 2/3 of one lobe removed. He was diagnosed with COPD in his late 60's. He lived to be 76. My...

The big red flag, for me, is the haste to do surgery. I was recently hospitalizes (CF floor, CF Team) and I coughed up a quantity of blood. There was no talk of surgery and the CF Team feels that a bronc can cause additional problems. With CAT Scans and MRI's there are less invasive ways to...

You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST. There are several in NYC. Call on Monday. If necessary call your PCP for a referral. Don't wait and stop seeing the Doctor that you are seeing. Columbia University Adult CF Clinic 212-305-0631...

It is only my opinion based upon many, many years of mis-diagnosis. I am only commenting on what you have posted here and what I would do, if I were in your situation. BCH has one of the best CF Clinics in the US, it is also DIRECTLY connected with Dana Farber Cancer Clinic. You do what...

I would suggest that it is time for a second opinion. You could go into NYC or up to Boston either way it is a one day round trip on the train. If you select Boston, I would recommend Boston Children's Hospital Adult CF Clinic. Billl

Wow, I have so many questions. Were you diagnosed at an APPROVED CYSTIC FIBROSIS by a CF SPECIALIST> Have you had a FULL CF SEQUENCING done? Bill

Aimee: I was diagnosed at age 47 and there is a woman out here who was diagnosed at age 76, so 27 is nor out of the norm. I don't know much about the medical system in the UK but it is critical that you see a Cystic Fibrosis specialist for your CF health management. There must be a CF fund...

Ratatosk: You are making my point for me. When one has a disease such as CF, proper medical care is critical. Traveling 250 miles four times a year (or more) is not easy but it is better than the alternative. Bill

Ryan: I am 75 and dx at 47. I am "the most mis-diagnosed person in the world. I understand and I feel your pain. If, as you stated, you consider your CF Specialist as a "car salesman" then I would tell you to get a new Doctor. It has taken a few tries but I now have a CF Doctor who I...

Ryan: I should have asked this earlier but are you being seen at an APPROVED CF CENTER by an CYSTIC FIBROSIS SPECIALIST? Secondly, the WORST place to find CF info is on the internet. Call or email your CF Doctor and get CORRECT answers from him/her. Bill

If "the hospital has done sensitivity testing to try and find an alternative, but nothing except bactrum has shown any response", then you have answered your own question. A one month "vacation" from bactrum may help her. Bill

OK, as someone who went from 0% PI to 100% PI, I gave you my best opinion. It is not, however, as informed as some "Moms". Good luck. Bill

Kirio: She may not need enzymes. Are you seeing a CF Specialist at the CF Center? Bill

What is the issue with her not taking enzymes? Does she experience stomach pain/aches after eating? If her weight and vitamin levels are good she may function well without any enzymes. Bill

Falling: First, STOP Googling CF, there is no place with as much out-of-date information as there. Second, attend one of her clinic visits and discuss this issue with her CF SPECIALIST. There you will get informed answers to your questions. I am 75 years of age and recently celebrated our...

Simba She is one of a VERY FEW!!!