question about doctor

[2sickkids]

Ok so in a few days i will go get a sweat test. The question is my doctor said they will only take a neg sweat test and a negitive genetic test as proof i dont have it also. Why do they need both? And if for some reason i test positive will switching to a cf center be a must or can i see my pulm still? I 'm a bit worried.

 

[anonymous]

Switching to a CF doc is not a "must", but there are a lot of things available at the CF Clinic such as a social worker, dietician, etc that your regular pulmonologist will not have.
Also, how much does your pulm. know about CF? Do you feel comfortable enough w/ his knowledge of CF to let him continue to treat you?
Ultimately this is your decision, you just have to weigh all the options & make the best decision for you.
Good Luck!

 

[anonymous]

Dear 2sickkids -

I sincerely hope that your testing is negative, but if CF is the result it may finally give you some answers to many of your ailments. Perhaps the doctor wants both results because of the many symptoms you have, and he/she wants to be absolutely certain that CF is not the culprit. It is rare, but some people do test negative to a sweat test, and later genetic testing confirms CF.

You have the choice to stay with your pulmonologist, but like the previous poster said, the CF center may provide more support and people who specialize in all areas of CF care. You can always go for a consultation visit and see what you think.

Good luck, you are a courageous mom and I know we all wish you the best.

Maria (mother of three daughters, the youngest Samantha w/cf)

 

[cfNana]

Do you have 2 sick kids with CF? I wouldn't trust a sweat test anywhere than from an reputable CF center I had one done at our local Hosp. , the nurse actually scraped the sweat from my skin, it came back difinately positive the numbers were as high as they could be. At a good CF center they didin't even touch the test tube they put my sample in, as fingerprints would add to the weight and not give an accurate number. It still came back positive but the numbers weren't as high (not that I think it matters) positive is positive but the first one could have been inacurate. I recomend the CF specialists over a pulmonologist unless he has ever specialized in CF. I've found around here that even the gastroentrologists don't even want to touch me. I do however go to my local hospital when I have mild cases of pneumonia but I usually end up educating the staff on just about everything, and I keep in touch with my CF doc the whole time I'm there. He usually gives what treatment and course of antibiotics I need to be on. I live 3 hours away so sometimes unless I'm critical it's easier to stay here. I don't have a regular pulmonologist around here just a primary care doc and heart specialist. They are just not as informed CF wise about alot of the things you need to know to stay healthy. Just like anonymous indicated you'll need a dietician, respitory therapist, airway clearance device etc.. Anyhow good luck. cfNana

 

[2sickkids]

Thanx for the input. I am a bit iffy about my pulm. He has told me somethings that make me wonder. Such as you don't get cf as an adult. Since both of my children have cf I know that. My pulm has also told me many time that there is something wrong w/me but he doesn't know what. He looked thru my medical records and them told me he thought my kids doctors were right I have been sitting around 40 on my prt's for 3yrs and I need to get tested. I have had some type of respitory infection every 2-3 months he said that was what makes him worry. I have only been seeing him for a few months it always takes a while to get used to a new dr. I am going to a cf center for my test.
Thanx