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

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Date Joined Aug 2007
Total Posts : 1
   Posted 8/7/2007 8:59 PM (GMT -6)   
   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!

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Date Joined Feb 2007
Total Posts : 1050
   Posted 8/8/2007 8:59 AM (GMT -6)   
Hi there, and welcome to healing well, hope you manage too get some good answers too your questions!
How awful too be diagnosed so late in life! It must be such a shock, especially as it's not even been thought about before now. Hopefully now that you're on the right treatment, things will start looking up for you!
The TOBI is becoming standard treatment for psudomonas, some clinics are currently also trialling, 1 month TOBI, 1 month Colomycin (AKA Colistin or Promixin). That way there isn't a gap where you're having no treatment.
I don't know too much about bronchiectasis, so can't really say much about it.
I have had rifampacin in the past, but can't remember anything except that it turns your wee red.
I really do feel for you though. It's bad growing up with CF, but at least you have an idea about what too expect. It must be awful knowing it's been untreated for 48 year's, and only just finding out what too be expecting.
Hope this now is the answer too your medical team being able to help and treat you better!

Co-moderator in the: Cystic Fibrosis Forums
 Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
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New Member

Date Joined Dec 2008
Total Posts : 8
   Posted 12/29/2008 11:17 AM (GMT -6)   
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!!
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!!!

New Member

Date Joined Feb 2009
Total Posts : 1
   Posted 2/1/2009 7:11 PM (GMT -6)   
I am new to this website.  I just wanted to tell you there is hope out there for cf patients.  I met a wonderful woman last March at a restaurant.  She is 44 years old and has cf-She is the kindest person I have ever met in my life.  She takes several medications daily and has a vest that she does twice a daily.  She has had 3 brothers and 3 sisters die from this disease.  She has a wonderful heart and a wonderful sense of humor-she makes everybody laugh.  She is going to Cleveland on the 6th of this month to have sinus surgery.  I am praying everything will go smoothly for her.  She was in the hospital for two weeks for a cleanout with antibotics and iv fluids.  There is hope for cf people out there.  My friend Tammie is living proof of this.  Please say a prayer for her that the surgery will go well-she doesn't do well with pain meds and her blood pressure drops and her sugar goes sky high.  If you would like to talk to her let me know.  Anne tongue
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