Cystic fibrosis with 66 years

Question

At the age of 16 years I was tested positive for cystic fibrosis.
My brother who also had CF died at the age of 38 years (1985). Till 2005 I had no problems. Then the lung infections etc. began.
I lived in Spain and I was not treated CF specifically because the finding was not taken seriously; not even when I had a genetic test done on my own costs which was clearly positive.
In 2012 I moved to Austria. Here, the sweat test and also the genetic test were repeated. The result of both showed clearly that I have cystic fibrosis.
As one might expect, I was also tested positive for pseudomonas.
Since then everything has been tried to eradicate the pseudomonas, but everything, all inhalations, Ciprofloxacin and infusions have not changed anything.
Possibly I have had it for decades.
I am feeling like a “guinea pig” and I am really tired of it. I am 66 years old, and I am feeling relatively fine. At night, I need oxygen though.
My question is: Can I just ignore the pseudomonas? I have been having it for sure for decades. Is it still even possible to eradicate it?
Thank you in advance for your time.
Lilac

Answer

Hello,

Evidence and treatment of an infection with pseudomonas aeruginosa associated with cystic fibrosis are of great importance. After proving pseudomonas for the first time, the complete eradication of the germ through antibiotics is still possible in many cases.
If this is not possible, there is often a long-term (chronic) infection. It is known, that a chronic infection with pseudomonas aeruginosa leads, among other things, to the decrease of lung function.
Therefore, also in case of a chronic lung infection, antibiotic therapies are recommended.
In this case, the aim is often not any more the complete eradication, but the suppression of pseudomonas aeruginosa. Hence, in case of a chronic infection with pseudomonas aeruginosa, nowadays long-term antibiotic inhalation and regular intravenous antibiotic therapy is recommended.

Probably, you have a chronic infection with pseudomonas aeruginosa.
The probability that the germ can be eradicated completely is rather small.
However, it is not recommendable to ignore the infection.

On an internet platform like this it is not possible to give any medical advice, therefore I would recommend you to contact your cystic fibrosis outpatient department/CF centre and to decide together with the treating physicians about suitable therapeutic possibilities for you.

Kind regards,
Dr. Christian Hügel

15.09.2015