Surg and Trx for Mild CF in a 48 yr old.

   I have been reading the posts and suffice it to say everyone here has it worse than me but I have some questions that maybe someone out there has had some experience with.    I am 48 year old female.  For the past 2 1/2 years I have had continous infections with MRSA, Pseudomonas and Aspergillis.  I have had pneumonia in both lungs that has never completely cleared during this time and I have been in the hospital with severe pneumonia 3x.   I just got my 3rd PICC line removed 2 weeks ago.  The first year I was tried on 17 different antibiotics until they finally did a bronchoscopy and actually cultured me and got me on the right antibiotics but I only have a month or two off of any meds then I get sick again.  I have no other health problems and the doctors had no idea why I could not get completly bettter.  I have developed bronchiectasis now as well.    2 months ago I got a new pulmonologist as my doctor left.  At that time I was starting to get sick again and ended up in the hospital, thus my most recent PICC line.  As a long shot my new pulmonologist ordered a sweat test and low and behold at 48 I have been diagnosed with CF.  I am undergoing testing now to determine the type or variant and they are starting me on Rifampin daily and TOBI one month on, one month off.  I had been referred to a thoracic surgeon for possible partial lung resection due to the bronchiectasis.  My infectious disease doc had referred me for the surgical eval.  I know the TOBI is becoming more standard trx but what about the Rifampin and has anyone had surg for bronchiectasis.   Additionally is there anyone out there who has had no problems until this late in life??  My pulmonologist and immunologist both have told me it is rare but it is being seen more.  Thanks for your advice, input in advance!

Hi. I'm not sure if I'll be any help to you or not. I was just diagnosed 6 years ago. I'm now 33 and on o2 24 hours a day 7 days a week. I'm on 14 meds, last count, and on the nebulizer. I can't do the vest as it was causing bleeding. I now have my PICC in for the 3rd time and I hate it!! It's so hard to bath and it gets caught on things, its just aggrivating! Life has and is difficult at times. I wake up most mornings feeling crappy and try not to be too cranky with my two boys. They are my whole life!! When I first was told I couldn't believe it. I always heard that this was found when you're younger. I thought I was the only adult out here! My whole life changed. I quit smoking but took to drinking. I have quit that though! I was also diagnosed with depression and cardiomyopathy. They thought I would need a double lung, heart transplant. My heart has healed since then so that's one hurdle down!! I hope you will feel free to write me. I'd like to have some new friends!!

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I am 33 years old and was just diagnosed 6 years ago. The doctors never knew what was wrong. I only weighed 78 pounds and was barely able to get off the couch. After i was diagnosed I became very depressed and turned to drinking. I am now sober, 10 months and feel much better. I'm now awaiting my double lung transplant and am very excited, yet nerveous! My two children are happy their mom will be able to play again. They are the reason for me doing all this. I'd love to meet some new people in the same boat I'm in and make new friends. Please feel free to write me anytime!!!

 

Vic