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I was having that problem last fall when I was sicker. The thing giving me the biggest problem was hypertonic saline. They changed me from 5% to 3% and I was able to tolerate it. The other thing I would do is stop the nebulizer whenever my coughing got too violent. I would then turn it back on...

The genetic mutations can indicate different severities of CF. You may have a subset of symptoms and still have CF. I was diagnosed at 34 after a long series of lung infections that weren't responding to antibiotics. I am pancreatic sufficient, which means I don't have to take enzymes. However...

I was diagnosed at 34 and at the time was pretty healthy. Although I am still pancreatic sufficient, my health has declined quite a bit in the last 13 years. If you pick up infections (e.g., pseudomonas, steno, etc.), it can greatly affect your health. These infections should be treated as soon...

I can't stand ADEK since they switched to the aqua pills. My pharmacy substitutes a chewable Flintstones vitamin paired with a 400 IU Vitamin E tablet. Based on conversations with the CF nurses, I seem to be one of many who do this.

I keep a spreadsheet that includes FEV1, FEV1 % and FVC. I find it helpful to look at the trends, where my high and low values are. They would give me a copy if I wanted, but I wouldn't use any of the other information. My clinic actually keeps a hand-written list in my chart that tracks these...

I strongly agree with the comments above. My sweat tests come back negative -- not even borderline. However, I was diagnosed at age 34 with genetic testing. I am pancreatic sufficient, so I don't have to take enzymes. Pancreatic sufficient CFers generally are not as thin as those who are...

My story is very similar to Red9928. I had multiple sweat tests as a child that showed I did not have CF. I was finally diagnosed at age 34 based on DNA testing. As stated above, the DNA test overrides the sweat test. I was also treated for asthma until my CF diagnosis. Personally, I feel like I...

The sweat test is not effective for some mutations. I am one of them -- although I don't know what my value was, my sweat tests are negative. However, genetic testing has confirmed that I have CF. I went undiagnosed until age 34, so it's good your doctor is on top of this. Good luck with the...

I have mycobacterium abscessus -- not exactly the same as MAC, but they're related NTMs. I'm sorry you are dealing with MAC -- these infections are very hard to treat and can be discouraging to live with. They generally test for NTMs in two ways: an AFB smear and a culture. I've been told that...

I can think of a number of things that could be going on. First and foremost is how do you feel? I've had lung function changes (ups and downs) lag how I feel. In other words, I'm feeling a lot better, but the lung function doesn't come up for another week or so. If you're feeling better, I...

I am pancreatic sufficient and ended up in the hospital with pancreatitis a few years ago. It was awful and so frustrating. I was told they couldn't give me anything to make me heal faster. They had me on a clear liquid diet during the worst of it. It's so hard to get calories on a clear liquid...

I'm so sorry for what you're going through. I got really sick last year and ended up in the hospital for six weeks. My lung function had dropped from around 50% to 30%. I left the hospital at 37%. When I first got out, I was surprised at how much effort it took to walk and I found myself easily...

Eric -- in terms of my increase in medical routine, things have layered on over the last few years. First, I started long-term IV treatments for mycobacterium abscessus in early 2011. I've been on at least one IV med this entire time and sometimes have an additional IV. Another change is lung...

I started working part time when I was first diagnosed with CF. I was working four days a week and taking a long weekend. After about a year and half, I went back to full time. A few years later, I started having more serious health problems and went back to four days a week. During these...

Last year I got very sick and ended up in the hospital. This was the most sick I've ever been and it was scary to say the least. Soon after admission, my doctor asked me if I'd like to see a therapist given my recent health challenges. She was glad when I agreed. I was in the hospital for six...

I was diagnosed at 34, which I thought was late. Like the comment above, I found that once I started treatment I was feeling better pretty quickly. Although I've only observed it for the last 12 years, things have changed a lot in CF care in the last 20 years. People are living a lot longer, as...

I take Florastor. At the time I started probiotics (a few years ago), my doctor said that it was the only one that had gone through scientific testing. It sounds like that may no longer be the case, but I've just continued on with it.

I'm so sorry you going through this and I hope they can find out what's wrong with your son soon. Then he can receive proper treatment. I had multiple negative sweat tests as a child. At 34, I was diagnosed with CF by a DNA test. CF symtoms can vary based on the mutations and the individual. I...

I was on the Podhaler for a while and it worked OK for me. I went off of it because I was on other antibiotics that duplicated TOBI. One of the CF care team members at my clinic mentioned that some people have so much trouble with the Podhaler that they have to go back to nebulizer TOBI. She...

That's great news -- I'm glad you're feeling better. I've had cases where my FEV1 will lag the way I feel, so hopefully yours will come up over time. I look forward to Kalydeco being rolled out to more people. My mutations are Class II and V, so I think I'll be waiting for a while longer.