Search results

As soon as I started my treatments, the cultures turned up negative. However, 10 months into it I got back positive MAC cultures. I stopped treatment 2 months later, so I did a total of 12 months. I continue to culture MAC. Currently, I am not treating it, trying to see how my body responds. I...

Yes, I am pancreatic sufficient. My other mutation is DF508

Awesome video! Very inspiring!

Absolutely agree. Every CFer needs to make exercise an important part of their life

I think general pulmonologists and urologists (for males) need to do a better job at recognizing symptoms and referring individuals to a cf clinic. Had my pulomonoligist and urologist done so I would have been diagnosed much earlier. I got diagnosed at age 41.

Thank you GoryLori, rheamc and rtorres25 for responding. I've sent you all a Private Message on this forum. Check your inbox.

I've bled numerous times. Mostly when it was totally unexpected. However, this last winter I did start bleeding after I was shoveling heavy snow for an hour or so. I went inside after I was done, took one cough and the floodgates opened. This is the only time I can remember it happening after...

My last PFT was 87. I got diagnosed 2 1/2 years ago after spewing green gunk for about a decade or so. When I first was diagnosed my PFT was 74. I got it as high as 91. These high numbers were after I treated or was treating MAC. I stopped that treatment 2 months ago. I work hard with my running...

Thanks. I ran this race with family and friends. We had a great time!

Running is an excellent form of therapy. I have not replaced a treatment with running, but I have complemented my treatments with it. For instance, before I go to run I will do my hypertonic saline. While driving to the park or gym to run I will do my acapella for 15 minutes. I then run (usually...

I have a question for those of you on Kalydeco. Since you have been taking it, what has changed in terms of your daily airway clearance therapies? Are you still doing them a couple of times daily or have you been able to reduce them? What else has changed in your day-to-day care of your cf as a...

I've cultured that but they have never treated it.

I would let your doctor know.

Also, ask your cf doctor about mephyton. It is prescription strength vitamin k. I've used it when I've had bleeding episodes. Get better soon.

Thanks for the response and well wishes njlins. I hope you are able to get all those bugs treated and get them under control. I do have bronchiectasis in 3 of the 5 lobes and also in the lingula (branch connecting left lobes). My last CT scan a year ago+ did show some nodules. Thanks again for...

Thank you for the response Michael. I am asking about a sensitivity analysis. I am not sure if there is one. All my meds are oral antibiotics and are common for MAC treatment. I hope that you can get your condition under control and you get some relief.

I am almost 11 months into my MAC treatment. All was going well. No MAC cultures for the entire time until yesterday. I was told that it grew again! Very, very disappointing. Next month I am meeting with my infectious disease doctor to discuss next steps. I am currently taking rifampin...

Hi Maggie, I'm 44 years old. I was diagnosed with CF a little over two years ago. That was quite a jolt! I knew I had to do something to keep my health and lungs strong. I decided to start running about 6 months after my diagnosis. Little by little I built up my stamina. I now run a few times a...

I saw the film about 6 months ago. I did not realize what the end story was going to be. I thought as I started watching it that everything was going to work out. It was very sad and I cried too. The film may not be for every CFer, depending on their physical and mental state at the time. The...

Angelo, so sorry about your brother. I can't even imagine what it was like for your family to deal with his death. I have a sister with cf that is a year and a half younger than me. Though we have the same mutations, our symptoms are different. My lungs are more problematic than hers. I culture...