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I wonder why any Doctor would give up on you. Why do you think he/she/they did that? Bill

You don't say how old he is. I have three friends who each ran the Boston Marathon. It takes 6-8 weeks before they were fully recovered. I would stay with 10K and maybe half marathons. Bill

I am allergic to both Toby and Pulmizime so I really just neb 7% Sailine. You need to know that my CF is much different than your hubbys. I still have pretty strong lungs but my pancrease is shot. He is the reverse of that. This disease is controlled by which 2 mutations that each of us...

Put Grant in his room and forbid your parents to go in that room. You will piss them off but they will get the message. Bill

I have had Pseudomonas but it is controlled now by nebs of sailine. Bill

I am now 73. I am 100% pancrease insuficent. My PFT1 is 72%. I take Doxycycline only once ever few months, (7 days only) for bacterial overgrowth. If I were him, I would get a second opinion on the level of antibiodics that he is taking. Bill

I was dx at age 47, so I have some knowledge of what he is going through. I'm not a Doctor but like him (before I went to a CF Clinic) I was treated with antibiodics on a monthly basis. The first thing the CF Specialise was to stop this. You are right to be concerned about resistance. This...

Yes!! Get a SECOND OPINION from a APPROVED CF CENTER by a CF SPECIALIST. Bill

I understand that you are in Michigan. I was using MGH to show how you can be at a CF Center without seeing a CF Specialist. Ask whoever you are seeing, to get you into the CF CLINIC. Bill

Massachusetts General Hospital is am APPROVED CF CLINIC and has more than 2000 Doctors on staff. Only 7 Doctors are CF Specialists. You need to be seeing a CF SPECIALIST. Bill

The stress test was on or before 1-12-13. It doesn't take 2 weeks to get results. Mom will not come back here and tell us her DD was in danger of death by continuing with her activity. Bill

IF you tell me where you live (nearest big city) I'll tell you where the nearest APPROVED CF CLINIC is. Bill

As someone who is now 100% PI, I would say that you should thank your GI-Dr for her agressiveness. Having said that, your son should be immediatly taken to an APPROVED CF CLINIC and be seen by a CF SPECIALIST. THere are almost 2000 CF mutations, any two together will cause CF. The newborn...

Actually I was being serious but I should know better. My Cf Doctor was able to go in depth explaining my mutations (one extremly rare) but I also know alot of CF Doctors can't do that. Thanks LittleLab4CF. Bill

Yes, she is a CF Specialist. She will be able to explain in detail the meanings of these mutations. Bill

CHOP is one of the best CF Centers in the country. Your story goes to reinforce the fact that all Doctors are not created equal. As a Resident, he is most likely training to be a pead and like most peads he knows little about CF. Your CF Doctor (CF Team) was only a phone call away, he should...

Shellee: Is your son being seen at an APPROVED CF CENTER by a CF SPECIALIST? Bill

If you stay out here for a while, you will hear from alot of CF patients in their 50's, 60's and some in their 70's. A year ago, while a patient at the Massachusetts General Hospital, a nurse told me that they had a CF patient in the hospital who was in his 90's. I know that it is hard and...

When I told you that I would be 73 today, I wasn't looking for your birthday wishes. I was telling you that CF is not a death sentence. At 73, i'm not even the oldest CF patient at my clinic. Your child will, most likely, have a full and long life ahead. Bill

OJL5-12-12 Please don't cry when you see me. I will be 73 tomorrow (1-19) and last Sept we celebrated our 50th Wedding Anniversary. Bill