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I can only echo what others have said. However, I will add that I started out as an introverted person, but once my health started to decline, I became more so. Sometimes it is because I just feel too tired and worn down to go out and enjoy things. Other times it is because I feel I just don't...

Even though I had a plan in place with my school, it was not a district or state wide plan. It only covered my school. Requiring a doctor's note for the absences does not sound like the school is asking too much. I've had my doctor mail me a letter and brought it in to the school and that worked...

I get a chest X-ray at least four times a year. These happen during my hospitalizations; one when I go in and one before I leave. Ever 2-3 years, I have a CT scan to get a more detailed picture of how my lungs are doing. This is been my routine for over ten years now.

Two years ago, I was exactly where you are now. It's a dark place to be, but by seeking help, you've managed to take the first step out. I had to start with the little things. I'd reward myself for doing my vest and taking all my pills for a day. And then for a week. And then I'd have a set...

I was a false negative on my newborn screening. It was 8 weeks later I was diagnosed.

Newborn screenings aren't always correct. My newborn screening did not show I had CF, but after struggling to gain weight, my pediatrician referred my parents and me to the CF clinic and the CF docs. After a sweat test and more genetic testing, my parents found out, when I was 8 weeks old, that...

I agree that the RespirTech vest is pretty loud, but at this point in my life, with my health the way it is, I'd much rather have a couple treatment times a day when I can't hear anything around me, but a really good treatment, than be able to listen to the things around me and not get as good a...

I started with the Hill-Rom Vest when I was 5. It was the old, huge machine, but it worked. I got an upgrade several years ago to the smaller, more portable machine and still loved it. This past summer, I switched to the RespirTech and feel it is doing a better job of getting junk out of my...

While I agree with Bill in that coughing is fantastic, I also know what you're talking about with the Cayston Cough. I have the exact same reaction whenever I do my dose of Cayston. I cough so hard, I occasionally throw up, and I'm left with that awful headache that feels as though my brain is...

There is always a chance a doctor can miss something. As you said, they are only humans. Has your daughter ever had a bronchoscopy done while in the hospital? Sometimes the bugs a person has don't always appear in a regular sputum sample because they're too deep in the lungs. My regular cultures...

It depends on the other person. Usually I ignore them, if all they are doing is giving me dirty looks. If they come up to say something to me and they're polite or respectful about it, I politely tell them I'm not contagious, I just have a lung disease that makes me cough. On the rare occasion...

You said she met with someone in the disability office, but did she register her CF with them? If she only met with someone, she may not have been covered by the disability services just yet. I know I had to register with the disability office before they would "have my back" when my health got...

One thing my parents did when I would get sick is to let me have cough syrup, but only at night. In their view, yes coughing was a necessary evil, but sleep was also pretty important to getting better. If my coughing was keeping me up at night, I would get half a dose so I could fall asleep...

Hannah, I went 3, almost 4 years, without doing my vest treatments, Pulmozyne or inhaled antibiotics. I simply couldn't bring myself to do them. I'd look at my vest and I'd feel a weight sitting on my chest, and it felt like a hand was reaching in and squeezing so tight I couldn't breathe. I...

Try and get in touch with the CF team at the Children's Hospital in Aurora, Colorado. If you can speak with Frank Accurso, Ruth DeVoogd, or Scott Sagel you should be in great hands. Out of all the places I have received treatment, these doctors were my favorite.

I've had this happen a couple times. I can't for the life of me remember why, but after so long, they just stop working well. Getting a new one is really the best fix.

After each treatment, I use a microwavable breast pump sterilizer bag to clean each set of nebs, one bag for each neb. Then at the end of the week I do a major sterilization by boiling distilled water with a little dish soap, and then letting one neb at a time boil for 5 minutes. I use a clean...

I'm having the same issue with the sore muscles. I using a heat pad on my back off and on. I also have a heated massage chair cover and if the regular heating pad doesn't work, I'll use the heated massage and that usually works pretty well.

Growing up, my parents did everything they possibly could to make me feel as normal as everyone else. In fact, I went 19 years without really knowing CF was classified as a disability. It was never, never treated or talked about as such. I know I had CF, but there was never a big deal made about...

To the new mom: I know it sounds hard, but take a deep breath. CF sucks, I won't lie. But there is never a day when I'm not grateful for my life. Your daughter will give you tears, just like I've given my parents, but there's also a lot of joy yet to come in your life. If you ever want to talk...