Today, was also my quarterly CF clinic. I was actually full of emotions today. I was excited, anxious, nervous all at the same time. Why is that? Well from my last clinic in Jamuary my PFT took a dip. I blew a FEV1 of a 66 back in January. I knew something wasn’t right then. I felt tired and was coughing a little more. So I pushed my doctor to try some antibiotics to see if that would help. I cannot emphasize this enough but it is so important to have a doctor who listens to your concerns
I was wondering if there were transplant centers out there that are willing to do a transplant with someone who has cepacia? I have had it for 25 years. Doesn't really cause me a lot of trouble but I wanted to know if there are options for me when that time comes.
This interview is with a parent to a very young CFer. There is so much emotions wrapped up in this story that Jasara tells. You will read what she felt like hearing the diagnosis of CF. You also will read how she motors through life as a parent to a CFer. This is a must read!
My daughter graduates next month, and plans on visiting close friends by herself by train headed to Florida. Just curious to find any tips you may have as far as she's traveling with CF and needs her oxygen machine at night.
Here is another FANTASTIC interview with a Cyster. She is 26years old and really doesn't let CF stand in the way in anything she does. She has been gifted with a second chance at life through her double lung transplant. In the interview you will read some wonderful advice and somethings that will help all of us CFers and parents to CFers. ENJOY!!!
Take a read below.