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Anyone using Tricare military insurance? We have had Tricare Prime and will be required to switch to Tricare Reserve Select. Anyone buy a supplemental insurance? What is the catch regarding supplemental insurance? Does the supplemental insurance you have cover Durable Medical Equipment. We...

If possible take your parents to CF clinic so they hear a doctor say how important it is to avoid known illnesses. Your the mom and you must protect your child. I actually went a year without letting my mother-in-law see my daughter because she gave my neice motrin to hide a high fever because...

As for late puberty it was explained to me that it was due to decreased body fat. That is the same reasons why gymnasts are late. So if you get your body fat percent up that should help.

Hi welcome to the forum. To look up CF genetics look up CFTR2 at Hopkins. This has updated genetic information. I do know the M470v is a polymorphism and not thought to be disease causing in and of itself. Do you know the variants a combination of two between 5 T, 7T, and 9 T or two of the...

I sent you a PM. You are not alone.

CF services Pharmacy has the Pari ERapid, but I was quoted a price around $1300 and then as LouLou said the replacement head cost is crazy. Before my CF diagnosis and being educated on disinfection I bought an Omron VMT (vibrating mesh technology) and it cannot be sterilized. If you know...

If you are getting bloodwork ask for your vitamin D to be checked. My daughters GI, on the CF team, gave me an article that showed a relationship between low vit D and Flu deaths. She recommended a blood test level of 30, but preferred 40.

I have CF and probably the flu. My CF dr put me on Tamaflu right away, but still wants me to come in. This is different then my daughter who I took to pediatrician and he completely ignored my concerns. Luckily pediatrician could tell I was very concerned about my daughter and called the...

I am curious about the PFT machine spreading germs too. At my clinic the CF patients use machines held in their own rooms. The mouth piece is individual, but the tubing was not replaced. I will ask for that next time. As for the PFT machine in its own room I believe it can give more...

Justinsmama thanks for the post. I get mixed messages. This time I fealt like I knew what to decline from the pediatrician, but I didn't know to ask for the Tamaflu. The nurse really made me feel guilty about not calling the pulmonologist.

When you or your child is sick who do you call? Do you call your pediatrician? Do you call the CF pulmonologist? What about ENT? I am diagnosed with CF my daughter age 13 remains in diagnostic limbo. For myself I just Email my CF team any questions and they are always helpful. For my...

I sent a PM with my daughter's story, I am most interested in any information about the CF and connective tissue disease connection. Any advice about how to avoid a flare?

I have a diferent question. How do you know you are each carriers and that neither of you have CF. I found out I have CF because both of my children had genetic testing due to illness. They both came back with 1 genetic mutation that causes CF. However, since they each have different...

I agree that pets can be wonderful company especially when sick. I would suggest testing for allergies before getting the pet. Also since you are the Aunt I would make sure you are prepared to take the pet during hospital stays etc. I find it difficult to find pet care as needed.

I was able to reduce our prescription costs by switching to mail order for all long term meds. I get a written 30 day prescription to start a new medicine and take it to the local pharmacy if they have the medicine. At the same time I have the doctor send a 90 day prescription to mail order...

vest vs pep I have not seen this study, but I can say my personal experience that could help explain this. My daughter did not get her vest until age 11. Before this time her lung function dropped to FEV1 of 50%. Her PFT results were very often a shock. She always coughed, but no obvious...

I'm 36 diagnosed at 35. If you have the option to go to National Jewish I would recommend that. Make sure you see a pulmonologist specifically on the CF team. Best wishes

My daughter and I both chose Hill Rom the Vest. Respirtec made us sick to our stomachs. I think with advanced lung disease it would be worth it for Respirtech, but fortunately neither of us are there. The smart vest weighed way too much for traveling which we do often and so it was ruled out...

I am going to endocrinology tomorrow. My CF pulmonologist sent me to the endocrinologist who sees CF patients at the same hospital (CFF accredited center). I have a rare thyroid condition that can affect blood sugar. I was wondering if my blood sugar may also be affected by my CF. I am...

nocode, I am wondering if you did the chip test and if so what was your result. I am also pancreatic sufficient and I am going to the endocrinologist tomorrow. I was wondering if CFRD is even possible since I am pancreatic sufficient.