Search results

My 14 year old had cardio-pulmonary testing and I have questions from anyone who experienced this. Did your testing occur on a bike or treadmill? Do you know why one is chosen ever the other? Did your PFTs change between before and after? My daughter coughed lots of mucus into the breathing...

Has anyone tried Azythromycin 7 days a week at half dose verses full dose Mon, Wed, Fri. My doctor OKed either way, but I was wondering if anyone had tried both. I am most tired on Sunday and I'm hoping 7 days may help. I have fealt better on the Mon, Wed, Fri then without Azythromycin.

http://www.indiegogo.com/projects/amiigo-fitness-bracelet-for-iphone-and-android I guess this fitness tracker is getting closer. It tracks oxygen, heart rate, and body temperature as well as exercise.

That is the funniest thing I have heard. As my doctor put it "it is completely up to you if you want an epidural or not". I of course chos epidurals with both of my girls because it is up to you if you want to be in pain or enjoy your labor because if you are not in pain and sleep during labor...

As far as CF specifically, I coughed my second child out which may have been a good way to push, but she had the chord around her neck twice. It took quick doctor work to save her. Sorry if TMI bit this caused a terrible tear and lots of stitches. I had my other child and needed IV...

I would second a concern about sleep. I have read articles about children with CF being more prone to sleep apnea. I would see an ENT your CF team recommends. Does your son snore? Is his sleep cut short by his treatment schedule or is he up later then you would prefer trying to get...

I feel your pain. We did 6 weeks of twice daily Manuel CPT before my daughter got her vest at age 11. We had also done Manuel CPT when my daughter was a toddler and CF was toddler and CF was first suspected. I have such sympathy for those who live where vests are not available. When my...

I was wondering the same thing about a whole house humidifier. I grew up with one and didn't know I had CF until I was an adult. I have a major and a minor mutation so to speak, but I grow less severe bacteria then my daughter who did not grow up with a whole house humidifier. My daughter...

I had preterm labor with both of my babies. They are now 11 and 14. My first was born very quickly and un expectantly at 32 weeks. My contractions began at 19 weeks 2 days and I went on bedrest. She was born at 35 weeks 2 days. I would switch to a high risk OB and request a circulage. Best...

Thanks I spoke to her pulmonologist and he called in oral antibiotics. Her last culture was positive when she fealt fine, so he fealt this change was worth treating. Hopefully she gets to feel good for Christmas. The next step is to figure out if her surgical windows in her sinuses are...

My daughter 14, treated for not officially diagnosed with CF, coughed up blood streaked mucus before she vested with her hypersal. It looks like 4 distinct mucus balls that are orange in color. She cultured staph not mrsa most recently. It started with chest pain and a brief coughing fit...

Do you have his vitamins well balanced? Zinc and vitamin D are low in my family and correcting this really helped? What about allergies? If the clear snot is there it is sitting waiting for an infection? Wood floors and mattress and pillow covers may help. During the sinus surgery were...

I have resistence to thyroid hormone. Basically I over produce hormone like hyperthyroidism, but my body does not absorb the hormone into my organs so symptoms of hypothyroidism. Apparently that's rare.

Thank you, for replying. Were you able to do a sleep study at home or did you have to go to a sleep center or hospital. I guess I feel guilty contacting my CF team in the winter when I know there are so many patients so much sicker then me. I will E-mail them and see what they say.

Does anyone have sleep apnea? Before I was diagnosed with CF I was told by a pulmonologist based on a sleep study that I had sleep apnea. I was given CPAP machine because I had many low desats. i could not sleep with the CPAP machine at all. Would night oxygen help? My CF doctor said I...

There three companies that makes vests Hill Rom makes The Vest which my daughter and I have. There is also the Smar Vest and Reapirtec. You can contact each company and they have payment plan options if insurance won't cover the vest. See which offers a price company or payment plan that you...

I have traveled frequently with my a hill Rom vest and I suggest boarding when they say anyone needing special assistance and say you need assistance getting the medical equipment into thee overhead bin. Only once I had to assemble the vest. I also put the compressor in a bag and vest in a bag...

I don't know about home IVs, but you can request a case manager. If your CF team makes the request you get approved quickly. If you make a request they have 30 days to assign you. My case manager was excellent at helping me find out costs so that I could make informed decisions...

I had two children ******lly both before I was diagnosed with CF. My girls were both premature or they may have been too big for me. I am only 4 ft 10 inches. My gestational diabetes grew my 32 weeker to 5 pound 10 ounces of water weight. She went down to 4 pounds before she left the...

My daughter had the windows drilled and had no sinus infections the past two years.