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Well the problem with sweat tests is that some times they are "negative" or low even though the individual actually does have cf. there are people on the site here that were only diagnosed later through genetic testing because their initial sweat test results were below the standards for a cf...

So your Ambry panel came back with two mutations, G576A and R668C, and with all the symptoms you have the doctor you're seeing still says absolutely no CF? I don't quite understand his reasoning. Is this the same doctor that has been giving you a hard time throughout this whole process, the one...

I would agree with the others to get it if you can. Like Printer said, there are a lot more mutations out there than the 13 you were tested for. It sounds like your current treatments are working well for you and those wouldn't stop if you were diagnosed with CF but a diagnosis could give you...

I'm sorry for the struggles you're going through with the IVF process :( here are some other threads that may have helpful info for you about IVF. I also included a link to a blog of a CFer I know that went through IVF with his wife. Not sure if he had all the same issues or not but he may be...

There are lots of ways to eat healthy fats such as nuts, avocados, coconut oil, olive oil, butter, etc. that will give you extra calories you need to gain/maintain weight without eating junk food. there have been some conversations about this in the past so if you do a search for terms like...

Printer, sent you a pm. I shouldn't have responded publically and I apologize for derailing the original thread. Franzie, i think the threshold for IVs vs. oral antibiotics differs for individual patients. Usually for me I'll try to up my airway clearance if I feel something coming on or...

Printer, it's a valid question. Please be respectful of the original poster.

I get choiceful vitamins free with my zenpep. According to my nutritionist they are essentially the same as the ADEKs. They are the dark brown softness. and I think (can't remember off the top of my head) that the pharmacy I ordered Bethkis (Tobi) from had the option to get vitamins or other...

So sorry you're going through this but glad to hear you're beginning to feel a bit better. Saying a prayer for you. Keep us updated.

Hi heather, I don't have any personal experience to answer your question but found some older threads on the site where people have talked about their experiences with PCOS. The bottom link is a list of all the threads on the site that came up when I searched "PCOS." Hopefully some of these...

When I had mine done recently it was actual blood draws. They put in a small peripheral IV in my hand and drew them off that until it blew half way through the process and then they just did a couple more regular sticks. Good luck! As the others have said let them know ahead of time or right...

Thanks for all you both do to keep us up and running!

I have actually taken that medication for acne but didn't experience anything like that. I do remember the dermatologist saying that there could be serious side effects if i were to get pregnant so i stopped taking it. I'm sorry i don't have other advice or experience but i'm glad your son is...

Sounds like great advice from all. I know Disney does lots with foundations like Make-A-Wish and similar groups so I would imagine they are pretty good about accommodating all kinds of medical needs. I'm sure there is a way to contact them through the disability page that Ratatosk mentioned and...

I'm so sorry Regina! Hope you feel better soon. Feeling nauseated and doing chest PT is such a horrible combination especially with all the coughing involved! I would talk to your doctor as ratatosk suggested and let him/her know what's going on. I know the RTs have a specific schedule they tend...

thanks for bumping this AboveAll, I had missed the reply/follow up questions! and sorry this got so long! ;D I'm married (2.5 years) and have CF. my husband and I knew of each other for about 5 years before we even started dating and had circles of friends that overlapped in many places. we...

I'm like nmw and end up looking like a walking Apple ad with my iPad, I phone, laptop, etc ? I bring my own slippers as well so I don't have to walk around my room and get in and out of bed with just socks. My own toiletries, pillow, multiple changes of clothes/pajamas. I bring a sweatshirt as...

Hi Ryan, welcome to the forums! I'm so sorry you have to deal with what sounds like a more rare strain of aspergillosis. As someone mentioned it can be slower on the weekends and if someone doesn't have specific answers for you they don't always feel comfortable posting so it may sometimes limit...

Hi S, I'm so sorry this has happened to you. I don't have any profound advice for you but I think it's totally ok and emotionally healthy thing for you to grieve this loss. 8 years is a long time to be deeply invested with someone and im not sure if you were married (it wasn't clear from your...

I used to have those little tiny peripheral IVs blow all the time and they hurt so bad! Poor little guy. Hope he gets to feeling better soon! Not sure what hospital you're at or what the rules are these days but sometimes PT would find a time when the children's play room was closed and take me...