Pneumonia

[urmysunshine54]

I'm still relatively new at this having just been dx with Adult CF in January ofthis year.I'vehad a bad case of pneumonia three times in the last six months. Based upon your experiences, is this indicative of what I should expect in the future? Thanks so much for your feedback.
Susan

 

[Melissa75]

Susan,

Was it the same bacteria all three times? Did you feel it was treated aggressively enough? Were you back to baseline in between the pneumonias? I'm sorry you've had a rough six months. Personally, I've had some years be better than others.

This year, I spent Oct to mid-May either a lot sick or a little sick, with a variety pack of bacteria and never getting back to my old version of well in between flare-ups...except now, I'm there -ish again, and crossing my fingers it lasts.

Has there been anything new in your life you could attribute to the bad spell? For example, the obvious, a new bacteria living in your lungs; but also renovations to your home/workplace, hormonal changes, an increase in stress, a neighbor who likes to use his fire pit all weekend...etc.

 

[urmysunshine54]

Melissa - thanks for your response. I'm not sure I know enough to answer your questions. The last two chest x-rays showed 'infiltrates' in the lungs. Nothing new I can think of that contributes to the pneumonia...it feels like I get a month where I'm feeling pretty good, and then I get sick and seems to take forever to shake. I'm just hoping this isn't going to be a constant pattern. Sounds like you went through something similar...I'll keep my fingers crossed too, that you continue to improve.

 

[alluneedislove]

susan

Are you being seen at a CF Clinic? I have noticed if i go to a hospital or doctor that doesn't deal with CF they tell me its pneumonia because some of our bugs look like that on an x-ray. So it could be exacerbation of CF not necessarily pneumonia.

 

[Havoc]

If there's an infiltrate on CXR, it's pneumonia. The big questions here are: What's the bacteria? What are they sensitive to? What antibiotics have been used already, for how long and in what route?

 

[saveferris2009]

More big questions: what treatments are you doing in between pneumonias? What drugs are you inhaling? What type of mucus clearance are you doing? Manual CPT? The Vest? Flutter?

Your home care can influence your exacerbations as well

 

[urmysunshine54]

Thanks Teri, Jonathan and Ferris - my x-rays went to both my gp and a doc at the cf clinic and they have connected.
With these last two pneumonias I've been on levafloxicin (750 mg), along with my standard regimen of the MWF azithromycin. I am doing the neb, acapella and spiriva and nasonex for inhalers.

I'm wondering if recent history predicts future - I was out on short term disability and only returned to work about 6 weeks ago, and now I've been down and out with pnuemonia for a week. Is it possible to go from here to no exascerbations for an extended time?

 

[saveferris2009]

Maybe you need to be treated with IV antibiotics for pneumonia, instead of PO. You might need something stronger to kick it. Have you had sputum cultures conducted to make sure that they are using the right antibiotics for the bacteria you have in your lungs?

What type of nebs are you doing? Albuterol? Pulmozyme? TOBI?

Maybe the acapella isn't sufficient for mucus clearance for you. You may need manual CPT, the vest or something us to improve your mucus clearance.

Have you been tested to CF related diabetes? How is your diet?

There is really no way to predict the future in terms of exacerbations. You need to make sure (1) the exacerbation you have is treated correctly the first time, otherwise you are at risk for another exacerbation in a short period of time thereafter (2) your home care is up to snuff, otherwise you will get another exacerbation. I would start with those 2 points before worrying about what the future may hold.

I'm sure you are overwhelmed, but take it step by step with these questions to make sure you have all of your i's dotted and t's crossed.

Do you

 

[Havoc]

^^ I agree

 

[Melissa75]

...adding in emphasis on getting sputum cultures done, especially AFB (the one that takes 5 weeks to complete).

 

[urmysunshine54]

Ferris - thank you so much. I just called the cf doc to ask if I can be tested once I finish the antibiotics (next monday) to see if the pneumonia is still in my system. I think you might have something there with the last exascerbation not completely treated.

Melissa and Jonathan - thanks for weighing in, as well!