Recent content by theonlypirate

Thanks so much :) I'm still hoping to find someone with both (not just a family history) because I know a lot of my problems are specific to how the lynch syndrome affects me due to my CF. I'll try to find her though and see if she has it.

Has anyone on here with CF also been diagnosed with Lynch Syndrome? Since Lynch Syndrome and CF both put you at high risk for colon cancer, and I have both, my doctors are considering doing a prophylactic colectomy...but I'd really like to find someone else who has maybe been through this.

I'm posting this because I have a friend who tests positive for mycobacterium abscessus and she needs a transplant. She can't find a center that will transplant her. Does anybody know of any places that can help her?

Thank you so much for sharing your experience and advice. I'm so sorry for your loss and am glad you are able to share holidays with two more special boys. I like your idea very much and will definitely discuss it with my fiance. His brother was cremated but perhaps we can set up a table top...

I hope it's ok that I'm posting this in the "Remembering" forum. I figured this may be a topic a lot of people could use some help with and that a lot of people have dealt with. 4 years ago, my fiance's brother died of CF at age 25. My fiance also has CF and received a transplant within 2...

Hi all! I don't regularly post, but I always appreciate everyone's insight on things so... For the past few years I've had increasingly bad sinus infections that usually manifest as headaches and ear popping. It's kind of strange, but I can almost always breathe through my nose. The problem is...

Hi all! I don't regularly post, but I always appreciate everyone's insight on things so... For the past few years I've had increasingly bad sinus infections that usually manifest as headaches and ear popping. It's kind of strange, but I can almost always breathe through my nose. The problem is...

I have CF and have been with my boyfriend (who also has CF and is post transplant) for 3.5 years! We plan on getting married and provided Vertex is as wonderful as everyone says it is, having kids. It's definitely a personal choice. Our doctors and nurses have always been big on letting...

I have CF and have been with my boyfriend (who also has CF and is post transplant) for 3.5 years! We plan on getting married and provided Vertex is as wonderful as everyone says it is, having kids. It's definitely a personal choice. Our doctors and nurses have always been big on letting...

I'm 25 and recently my CF has gotten to the point where it's very difficult to keep up with my part time job (20 hours a week).  I used to work 30 hours a week so that I'd have hours "banked" for the time I'd take off during hospitalizations.  Now that I can barely keep up with the minimum I'm...

I'm 25 and recently my CF has gotten to the point where it's very difficult to keep up with my part time job (20 hours a week). I used to work 30 hours a week so that I'd have hours "banked" for the time I'd take off during hospitalizations. Now that I can barely keep up with the minimum I'm...

I'm 25 and recently my CF has gotten to the point where it's very difficult to keep up with my part time job (20 hours a week). I used to work 30 hours a week so that I'd have hours "banked" for the time I'd take off during hospitalizations. Now that I can barely keep up with the minimum I'm...

Do you know what "the proper precautions" are? My parents forget that there's also an issue of me giving her pseudomonas. I'm pretty sure we have different strains, if she even has it at all. I've tried to find this out (from them and the meds she takes), but I don't think they pay much...

Do you know what "the proper precautions" are? My parents forget that there's also an issue of me giving her pseudomonas. I'm pretty sure we have different strains, if she even has it at all. I've tried to find this out (from them and the meds she takes), but I don't think they pay much...

Do you know what "the proper precautions" are? <br /> <br />My parents forget that there's also an issue of me giving her pseudomonas. I'm pretty sure we have different strains, if she even has it at all. I've tried to find this out (from them and the meds she takes), but I don't think they...