Recent content by UNCLoveCF

There is currently a CF clinical trial with Aero Vanc, dry powder Vancomycin, enrolling CF patients. The delivery of Aero Vanc is comparable to the deliver of Tobi Podhaler for those of you familiar with Tobi Podhaler. Info below: To find out if a CF center near you is enrolling patients (click...

While I do not have MRSA, I do know many with CF and MRSA who do not currently have an available inhaled antibiotic to treat MRSA. This study is a great opportunity for those with CF and MRSA. Anyone interested?

I know it would be a long drive of flight but I highly recommend the Children's CF Clinic at UNC Hospital. UNC (University of North Carolina at Chapel Hill) is known for genetic studies and especially CF research. The team of doctors at UNC CF Pediatric Center have established a great program...

I had my first port placed one year ago on January 10, 2011. My port is placed in my upper right chest. I have a Bard Power Port. Mine sticks out far more than other CF patient's ports that I have seen. The upside to this is that I have never once missed while accessing my port. I wrote a blog...

JennifersHope,Have your lungs not been affected by your reflux? The only reason I am considering nissen fundoplication is because I am concerned I am aspirating. I culture: Pseudomonas, Ralstonia, and Aspergillus. In January 2011 I began coughing up blood and have since had numerous episodes of...

JennifersHope,Have your lungs not been affected by your reflux? The only reason I am considering nissen fundoplication is because I am concerned I am aspirating. I culture: Pseudomonas, Ralstonia, and Aspergillus. In January 2011 I began coughing up blood and have since had numerous episodes of...

I have CF, CFRD, Gastroparesis, and for the last year severe reflux. I had a pH-impedence test which came back normal, other than regurgitation being associated with cough. My gastroparesis is severe and I take two medications to treat delayed gastric emptying: Motilium alternated every other...

My spirometry is normal yet I am on IV antibiotics every 4-6 weeks. My FEV1 is in the 90's yet I am frequently coughing up blood and sick. I used to believe PFTs were indicative of one's overall pulmonary status with CF, but now I realize this is not always true. My CF doctor told me that I have...

Jane: <br><br>Did Josh's PFT's improve after using inhaled amphotericin? <br><br>Did he experience any side effects to inhaled Amphotericin?<br><br>Did Josh culture Aspergillus in his lungs? <br><br>Did Josh run fevers from the fungal growth? <br>

I took IV Amphotericin for two weeks. I became extremely sick with nausea, vomiting, and developed renal failure. I was told I have long-term kidney damage from Amphotericin. But I have not had my kidney function checked over the last few weeks to see if there has been an improvement. <br><br>My...

I also want to add that average FEV1 at a CF center is not as important as one would like to think. My FEV1 looks good on paper, yet I am very sick from my CF. I cough up blood regularly, have ran a chronic low grade fever since 2009, have experienced massive hemoptysis, and feel unwell 90% of...

Do not assume just because one center has higher life expectancy than others that the center has better CF treatment. Every center has the same access to drugs available by prescription. However, some centers accept much sicker patients than others; and this skews the centers CFF registry data...

Do not assume just because one center has higher life expectancy than others that the center has better CF treatment. Every center has the same access to drugs available by prescription. However, some centers accept much sicker patients than others; and this skews the centers CFF registry data...

Do not assume just because one center has higher life expectancy than others that the center has better CF treatment. Every center has the same access to drugs available by prescription. However, some centers accept much sicker patients than others; and this skews the centers CFF registry data...

Martha, Your experience is not uncommon. When I asked my ENT about using baby shampoo several months ago he told me not to use baby shampoo sinus rinses because it could cause me to lose my sense of smell. I irrigate with sterile saline, Tobramycin, Bactroban and Pulmicort. I also add Grossan...