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scanboyd: It is great hearing that you are doing so well. Bill

LM Please reread my last post. I said nothing regarding urine. I am also impressed by your superior knowledge regarding CF. The researchers of which I spoke are both funded by CFF and are "contributors" at the CFF Conventions. I spend appx 28 days a year on the CF floor at BWH, where all...

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 you are aware that I am on a first name basis with two of the leading CF Researchers in Boston. (If you need Lenny Sicilian will tell you who they...

That enzymes need to be taken with the first bite.

Lynnfield mon is obviously a CF Professional and I bow to her superior knowledge. I am curious though, does the colon produce its own mucus and why are CF Doctors so concerned about patients swallowing mucus if, in fact, it is digested by stomach acid and enzymes? Can I stop taking Miralax or...

Amber: I was/am in a study in the CF Clinic at Boston Childrens Hospital that is funded by Fitbit. Like all CF studies there are 2 groups, one who got Fitbits on day one and those who got Fitbits after 6 months. I was/am in the latter group. First, it is a great monitor of exercise. It is...

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...

Good luck in whatever you decide.

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...

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...

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.

Mucus is the cause of everything CF. It starts in the lungs and when swallowed goes into the colon. After building up in the colon it will, in part, pass onto the other organs. This is the cause of pancreatitis in CF patients. I don't wish to scare you but this is an important issue. I...

Drinking water before will help me. Dairy as in milk or ice cream 10 minutes before coughing can also help.

Reply in a personal message, I'm sure that I can help.

Dr Gerard told you that? Who are you seeing now?

About 6 years ago, I left MGH for Children's. For me, it was the smartest CF decision I ever made. Bill

I was diagnosed with CF at age 47. You are no sicker today than when you were diagnosed, it is just that now you have a name for your issues. Having said that CF is a progressive disease, it will over time get worse. I am now 77 so I feel that I can give you some advice. Continue to see the...

In the USA there is a drug that is given to control this problem. It is called TRANEXAMIC ACID, it is given in 650 mg tab by mouth every 8 hours for only 3 to 5 days. I hope that is available in Croatia. Bill

Kelly: I was diagnosed at age 47 so trust me when I tell you that I know exactly what you have gone through. It is critical that you be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CF SPECIALIST. You will continue to see your PCP but CF requires a specialist. If you will tell us the name...

OK whatever you say.