Search results

Gown up before coming into the room. In the room, on the wall, are three boxes of gloves, small, medium and large. Purell first then apply gloves and Purell after removing gloves. Gown is removed outside of the room. This is required for everyone who enters the room, not just Doctor's and...

When you were tested "every time you were pregnant", how many mutations did they test for? I would also be curious as to the number of mutations that your baby was tested for. I understand and applaud your standing up for your child. Bill

My CF Doctor once told me that I had a "mild" case. After some discussion he suggested that my case was "mild" because (at the time) I was 72 years of age and not dead. Bill

The short answer is, yes you COULD have CF. You should go to an Approved Cystic Fibrosis Clinic and see a CF Specialist. If your PCP won't give you a referral, get another PCP. Good luck, Bill

If you are taking your child to MGH or Children's, I can promise you, the Doctor's will tell you when it is necessary, I would expect the same would be true of all of the Massachusetts CF Clinics. Bill

Hi Meech. I'm happy for you regarding your recent diagnosis. At age 47 I was, pretty much, where you are now. You are on the road to feeling much better. I would suggest that you are still pancreatic insufficient, I base this upon your constant stomach pain. Would suggest that you be...

I'm 74 with CF. My mutations are listed below. I have been diagnosed at the CF Clinics at both Massachusetts General Hospital and Boston Children's. I have never had a positive sweat test and I didn't have digestive issues until I was in my 20's. She needs to be seen at an Approved CF Center...

I have a feeling that when the nurses put in a picc line, they really do their best to "do it right the first time". Bill

ktelizabeth: Massachusetts General Hospital is an Accredited Cystic Fibrosis Center. There are more than 2000 Doctors on staff there, only 5 are Cystic Fibrosis Specialists. It is not enough to go to an Approved CF Center, you need to see a CF Specialist. Bill

Note that Sam's Club is owned by Walmart. Many crossover products exist.

I have tested my AVENT and it got to 230 degrees F.

Your nearest CF Center is: John Hopkins Adult Cystic Fibrosis Clinic Baltimore MD 410-502-7044 Michael P. Boyle, MD, Director Good luck, Bill

Another local Doctor who can't even spell CF much less diagnose or treat it. There are almost 2000 known mutations and she tested you for only 32 of them. You do the math. Further testing should be for a FULL CF SEQUENCING. I would suggest that you go to the nearest APPROVED CYSTIC FIBROSIS...

We are all "intitle" to government benefits. Most CF Patients get large financial grants. Just call your Congressman.

Creon is to help in the digestion of food as a result of some pancreas insufficiency (not producing enough enzymes). There are several causes for this situation, CF being only one of those. Other than being "rather skinny" you haven't presented any CF symptoms. If you feel that it would be...

Makmona2: There are almost 2000 known mutations and it takes two of these mutations to have CF. 2000 X 2000 = 4,000,000. There are almost four million "strains" of CF. I am 74 years of age (there is a women out here who is 76). Among other things in my life I was a lifeguard, for five...

Ask your PCP for a referral. The sweat test that is given by a local Doctor is not the same sweat test that is administered at a Approved CF Clinic. Any Pediatrician should know that. Tell her that I said that. FYI, I never tested positive on a sweat test, perhaps because of my "mild"...

First get a new Pediatrician. There are almost 2000 known mutations, any two of which will cause CF. Your daughter was tested for 97 of the most common mutations. You do the math. Your daughter needs to be seen at an Approved Cystic Fibrosis Clinic and be diagnosed by a CF Specialist...

I sent a personal message

It means that your son needs a deletion/duplication scan. Yes he could be PI based upon a single mutation of Delta F508. Bill